Rheumatoid Arthritis
1079 Members
This online group serves the members of our arthritis community who are living with rheumatoid arthritis from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
Upcoming Events
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Tuesday, May 13th, 20254:00 PM PT1h
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Virtual Event
- 85 people attending
Join us to hear from Physical Medicine & Rehabilitation physician Dr. Rakhi Sutaria, presenting on "Pain Management for Rheumatic Conditions" with 30 minute Q&A.
Dr. Rakhi Sutaria, a board-certified specialist in Physical Medicine and Rehabilitation, is dedicated to elevating patient care at IMIDeology through non-operative treatments of musculoskeletal disorders. Her impressive background includes a residency and Sports Medicine fellowship at Montefiore Medical Center, with a deep focus on interventional and diagnostic musculoskeletal ultrasound. Dr. Sutaria's approach to care is holistic, integrating exercise, medication, and innovative injections to maximize patient success. Fluent in English, Spanish, Hindi, Urdu, and Gujarati, she is a valued practitioner who is thrilled to serve her hometown community, ensuring the highest standard of coordinated and compassionate care.
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Tuesday, September 9th, 20254:00 PM PT1h
-
Virtual Event
- 50 people attending
Join our Connect Group Co-Facilitator & healthcare executive, Dr. Jin Lee, presenting "Stress Management Tips to Reduce Flares" with 30 minutes of Q&A.
Dr. Jin Lee is the CoFounder and CEO of IMIDeology, a virtual clinic for patients with chronic inflammation and autoimmune conditions such as rheumatoid arthritis. Dr. Lee is an arthritis patient and also a caretaker for families members with arthritis. She serves on multiple startup and nonprofit boards, including the American Heart Association and the Healthcare Businesswomen’s Association in the past. She received her Ph.D in Experimental Psychology from the University of Oxford and BA in Biology and Neuroscience from the University of Pennsylvania.
Here's her story: https://www.arthritis.org/news/stories-of-yes/jin-lee-puts-skills-to-work-for-arthritis-patients
- Event List
-
Tuesday, May 13th, 20254:00 PM PT1h
-
Virtual Event
- 85 people attending
Join us to hear from Physical Medicine & Rehabilitation physician Dr. Rakhi Sutaria, presenting on "Pain Management for Rheumatic Conditions" with 30 minute Q&A.
Dr. Rakhi Sutaria, a board-certified specialist in Physical Medicine and Rehabilitation, is dedicated to elevating patient care at IMIDeology through non-operative treatments of musculoskeletal disorders. Her impressive background includes a residency and Sports Medicine fellowship at Montefiore Medical Center, with a deep focus on interventional and diagnostic musculoskeletal ultrasound. Dr. Sutaria's approach to care is holistic, integrating exercise, medication, and innovative injections to maximize patient success. Fluent in English, Spanish, Hindi, Urdu, and Gujarati, she is a valued practitioner who is thrilled to serve her hometown community, ensuring the highest standard of coordinated and compassionate care.
-
Tuesday, September 9th, 20254:00 PM PT1h
-
Virtual Event
- 50 people attending
Join our Connect Group Co-Facilitator & healthcare executive, Dr. Jin Lee, presenting "Stress Management Tips to Reduce Flares" with 30 minutes of Q&A.
Dr. Jin Lee is the CoFounder and CEO of IMIDeology, a virtual clinic for patients with chronic inflammation and autoimmune conditions such as rheumatoid arthritis. Dr. Lee is an arthritis patient and also a caretaker for families members with arthritis. She serves on multiple startup and nonprofit boards, including the American Heart Association and the Healthcare Businesswomen’s Association in the past. She received her Ph.D in Experimental Psychology from the University of Oxford and BA in Biology and Neuroscience from the University of Pennsylvania.
Here's her story: https://www.arthritis.org/news/stories-of-yes/jin-lee-puts-skills-to-work-for-arthritis-patients
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Connect Group - National - Rheumatoid Arthritis
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Comments [120]
I am very new to this disease and I am still trying to figure out the wide arrange of symptoms. I suffer from very bad joint pain, fatigue and brain fog. I do not get much swelling though. I may go a few days of feeling OK and then I go right back down hill again. I am also suffering from bad anxiety and depression as I cannot do what I used to at the moment. Does anyone else have all these symptoms as well? I started taking methotrexate a few weeks ago and I am praying I get some help.
Hi Julian and welcome to the group. Being newly diagnosed can be overwhelming. Symptoms can vary from one arthritis patient to another. It can depend on the type of arthriits you have as well as your medication, as well as other factors. I would discuss your symptoms with your doctor.
Since I cannot give out medical advice, I can offer support. And that is what this group is here for. We also have a newly created facebook page as well and here is the link if you are interested:
https://m.facebook.com/groups/1192610829115360/?ref=share&mibextid=wwXIfr
I also beleive that the Arthritis Foundation has a Connect group for those newly diagnosed. If you go to: arthritis.org/connect, and from there scroll down to Connect groups by topic, and you should find the newly diagnosed connect group, then click on it. You are more than welcome to be a member of one or several connect groups.
Patrice
Hello everyone, I hope this finds you all well. As your facilitators, we are always trying to find ways to improve this group. We want to serve you all the best ways possible. Therefore, we are happy to announce our new Facebook page. There you will get a more consistent connection with us and each other. Please be kind, open minded and remember we are all on a journey that gets very difficult. Share experiences but always check with your physician before making changes. We are not medical professionals and can only communicate from our own life lessons. https://m.facebook.com/groups/1192610829115360/?ref=share&mibextid=wwXIfr
Hello everyone, I hope this finds you all well. As your facilitators, we are always trying to find ways to improve this group. We want to serve you all the best ways possible. Therefore, we are happy to announce our new Facebook page. There you will get a more consistent connection with us and each other. Please be kind, open minded and remember we are all on a journey that gets very difficult. Share experiences but always check with your physician before making changes. We are not medical professionals and can only communicate from our own life lessons.
https://m.facebook.com/groups/1192610829115360/?ref=share&mibextid=wwXIfr
I've had ra for 19 years. The first 14 was great and I wondered if I even had ra, oh, I do! The last 5 yrs have been tough. 2 knee replacements and about 3 yrs of off and on use of prednisone. Now I just found out through x-rays and CT scan that the bones in my wrist are weak, thin, and have cysts. The doctor says it's due to ra and suggested disability. I'm only 56 and I love working. My husband and I would probably end up homeless if we don't have 2 FT incomes. I'm not sure if I can get the wrists fused because the doctor fears it wouldn't hold a screw. Can they do a bone graft for wrist bones? Has anyone had an issue like this? I could sure appreciate someone's experience with something like this.
I feel for you, I became disabled in my 30's, it has not been easy on us raising two boys on one income plus disability. I dabble in a few things to help make a bit of money, I've found variety is the key and might even let me get back to work? Can you maybe find a job with more flexability? Something with varied tasks and flexible hours can be a great fit for those of us struggling to keep up with the physical demand.
I feel for you, I became disabled in my 30's, it has not been easy on us raising two boys on one income plus disability. I dabble in a few things to help make a bit of money, I've found variety is the key and might even let me get back to work? Can you maybe find a job with more flexability? Something with varied tasks and flexible hours can be a great fit for those of us struggling to keep up with the physical demand.
I feel for you, I became disabled in my 30's, it has not been easy on us raising two boys on one income plus disability. I dabble in a few things to help make a bit of money, I've found variety is the key and might even let me get back to work? Can you maybe find a job with more flexability? Something with varied tasks and flexible hours can be a great fit for those of us struggling to keep up with the physical demand.
I feel for you, I became disabled in my 30's, it has not been easy on us raising two boys on one income plus disability. I dabble in a few things to help make a bit of money, I've found variety is the key and might even let me get back to work? Can you maybe find a job with more flexability? Something with varied tasks and flexible hours can be a great fit for those of us struggling to keep up with the physical demand.
Hello,
I am new to the group. Diagnosed with RA and will be starting Humira. I also have other conditions, like an enlarged spleen and liver disease, am diabetic (type 2), and have lung issues in the lower left lobe. I found out today I have tendonitis in rotator cuff on the right shoulder. In other words I have A LOT going on. I'm here to find support as my circle is very small and really could use some information regarding how diet can help with my symptoms and so on.
-GreenGummee
Looking for exerc trainer/ physical therapist and group in Portland OR. I am 63 with RA. On Orencia.thx for any recommendations
Hello everyone, I am new to this group. My name is Kim I am currently 26, I was diagnosed with RA at 17. I have had an ongoing battle with trying to find a proper medication I am allergic to Cimzia. Humira as well as Hydroxychloroquine have not worked for me. I have other issues that keep me from going on methotrexate since I was told I may not be able to have children after. I did just have my first baby 4 month ago and I am not sure when exactly I would try for another due to my other health issues so I am not sure if I would just like to give that up and try methotrexate. I am currently off of medication due to health insurance issues and having bad flares. Anyone willing to share their thoughts on Methotraxte or overall on the topic. Thank you!
Hi, I've been on methotrexate for a few years now and it has been very helpful for me -- especially with swelling. I am on additional medications, but this one has always been my baseline and was a great start to managing my RA.
Hello everyone, I am new to this group. My name is Kim I am currently 26, I was diagnosed with RA at 17. I have had an ongoing battle with trying to find a proper medication I am allergic to Cimzia. Humira as well as Hydroxychloroquine have not worked for me. I have other issues that keep me from going on methotrexate since I was told I may not be able to have children after. I did just have my first baby 4 month ago and I am not sure when exactly I would try for another due to my other health issues so I am not sure if I would just like to give that up and try methotrexate. I am currently off of medication due to health insurance issues and having bad flares. Anyone willing to share their thoughts on Methotraxte or overall on the topic. Thank you!
Hi Kimberly - I've been on Methotrexate for almost 3 years. MTX does take several weeks (8-12) before you'll get any benefit. But after several months I was in 100% remission. Psychologically I didn't want the medication in my body, so we reduced my dose by 25%, and my RA symptoms returned - not at full force, but noticible. Even with going back to my original dose, I haven't reached that 100% remission state again. After about a year, MTX was less effective so I added on Hydroxychloroquine, and the combination of the 2 meds is effective for me. I have minor swelling upon waking, and that generally subsides within 30 minutes of moving around. Of course there are some not great days, but those are pretty few. My biggest drawback was MTX nausea. Most weeks it would last 36 hours. I added on leucovorin the day after the MTX, and that reduced the nausea immensely - but there has to be a 12 hour break between MTX and leucovorin. I'm happy that I've gained back an entire functional day each week. Even without insurance, it costs me about $15 a month using Singlecare or GoodRx.
Hi Kimberly - I've been on Methotrexate for almost 3 years. MTX does take several weeks (8-12) before you'll get any benefit. But after several months I was in 100% remission. Psychologically I didn't want the medication in my body, so we reduced my dose by 25%, and my RA symptoms returned - not at full force, but noticible. Even with going back to my original dose, I haven't reached that 100% remission state again. After about a year, MTX was less effective so I added on Hydroxychloroquine, and the combination of the 2 meds is effective for me. I have minor swelling upon waking, and that generally subsides within 30 minutes of moving around. Of course there are some not great days, but those are pretty few. My biggest drawback was MTX nausea. Most weeks it would last 36 hours. I added on leucovorin the day after the MTX, and that reduced the nausea immensely - but there has to be a 12 hour break between MTX and leucovorin. I'm happy that I've gained back an entire functional day each week. Even without insurance, it costs me about $15 a month using Singlecare or GoodRx.
Hello everyone, I am new to this group. My name is Kim I am currently 26, I was diagnosed with RA at 17. I have had an ongoing battle with trying to find a proper medication I am allergic to Cimzia. Humira as well as Hydroxychloroquine have not worked for me. I have other issues that keep me from going on methotrexate since I was told I may not be able to have children after. I did just have my first baby 4 month ago and I am not sure when exactly I would try for another due to my other health issues so I am not sure if I would just like to give that up and try methotrexate. I am currently off of medication due to health insurance issues and having bad flares. Anyone willing to share their thoughts on Methotraxte or overall on the topic. Thank you!
Hello, I am 36 years old and have not yet been diagnosed but I have a strong family history of RA. I was recently diagnosed with severe bilateral carpal tunnel syndrome and moderate cubital tunnel syndrome in my right hand and what bothers me the most is not the numbness and tingling but the ongoing and incessant "background noise" of joint pain, which feels like throbbing. I get the RF and anti ccp blood work annually because of the family history and joint pain but it's been negative. I think I'm at the point where I feel like the carpal tunnel was maybe caused by some arthritis and am not having luck getting a referral to a rheumatologist. Any tips for how to advocate for myself pre-diagnosis? Maybe it's nothing but I'm afraid I'll have to wait for the dreadful day where I wake up stiff and it's too late.. Thanks in advance!
Have you tried bluntly asking for the rheumatology refferal? I had to be very direct to get mine. I told my doctor the inflamation seemed to be throughout my body and asked to be refered to rheumatology to check for an inflamatory condition. It is okay to ask for what you need. It is also okay to see a different doctor if you are not given access to a specialist referal when you ask for one. Your primary doctor is meant to help you access specialty care, not gatekeep it.
Hi I'm Mari, was diagnosed with RA at 17 I'm now 26. This has been the hardest thing I've had to suck up. Every day is a new challenge for me. Flare ups have become part of my daily routine for years. Every night I go to sleep wishing tomorrow I could be "normal" again and not as fragile and weak. Sometimes I want to give up but I try to keep pushing. Even though my husband helps me with many things I still struggle with my hair, getting dress, etc. Feel like a burden sometimes.
Hi Mari,
I'm sorry to hear you're going through this. I understand how you're feeling. I've always been very independent and capable of doing everything but my RA has really slowed me down, especially this last year. I'm sure you're not a burden; your husband loves you and wants to take care of you. Please take care of yourself, be patient with yourself and grateful you have help. I hope your symptoms improve and you get stronger.
My husband has had RA for 36 years, first being diagnosed at the age of 30. As many of you know, living with a chronic illness that causes pain and fatigue is a challenge for both patient and spouse. It changes the trajectory of your whole life. Are there any caregivers out there who can comment on this? I am sending all you RA sufferers my hope that you find some relief.
Hi Sandra... I am new to this group and joined it on behalf of my brother. He was diagnosed with RA a couple of years ago as a response to the vaccine. I am his "care giver" I guess you could say as he is single and I am the only family. I suppose I"m on here to get feedback on how I can best support him. He's 70 nand I am in my mid 50's. We are very close and I listen to him and try to encourage. I'm now also trying to learn more. If you - or anyone reading this- has any suggestons on how I can be more supportive of him, please let me know.
I understand for sure! I have RA and my husband has a few complicated chronic health conditions. Between the two of us it is seriously alot of stress and constant compromise. We both get crabby when we aren't feeling great. He is a whiner, which makes me a little uts because I'm terrible at telling peopke I'm in pain, lol. I feel for you! Being a caregiver is hard work.
Some days I just want to give up
Hey Janice. I understand that feeling. Sending you good thoughts and hoping you find your strength today. I know you can do it.
Hey Janice. I understand that feeling. Sending you good thoughts and hoping you find your strength today. I believe you can do it.
Hey Janice. I understand that feeling. Sending you good thoughts and hoping you find your strength today. I believe you can do it.
Hello everyone! Looking forward to connecting in the support group. My name is Julie and I am 45 years old. I was recently diagnosed with RA and axial spondyloarthritis. Been going through a roller coaster of emotions and have been on short-term disability since 10/2. I'm about to return to work and a little nervous because I'm still waiting on Humira and have a lot of pain. Has anyone else here experienced taking
Humira? Also, I have reoccurring pericarditis causing a lot of chest pain. Does anyone else have this condition?
Hi Julie, Hang in there. The beginning is the hardest part while you figure out what will work for you. We are all so different, that does take a bit of time, but it is worth it. Don't be afraid to advocate for yourself! Let people know if you are struggling, you will be surprised how much that can help.
hello everyone. My name is Caren, I'm 44 and live in Seattle. I was diagnosed with RA at age 28, so it's been 16 years now. I also have a very complex spinal condition called cauda equina syndrome that has caused me to lose function and feeling in both feet and has required five surgeries over the years. I have a wonderful rheumatologist, but my RA has never been in great control. I've tried literally every biologic on the market and am currently waiting on a prior authorization so I can give Actemra a second try. I take hydroxychloroquine, leflunomide and 7mg/day of prednisone. (No methotrexate because the nausea was intolerable for me.) Some of the biologics have helped for months or even years, but nothing has lasted longer than that. I have always managed to work, but it's not been easy. I have a master's degree in public health and love working, but many days that is all I can do- no cooking dinner or socializing, and I'm in bed by 9:30. Are any of you already on disability or considering stopping your work? That's where I'm at now- I feel like I may need to either greatly cut back my hours or stop working entirely. I am very lucky to have long term disability insurance through my job and a wife who earns enough to support us, so I don't have to worry about our basics being covered. But I am worried about the psychological impact and don't want to add depression to my list of things to deal with.
Hello. I want to connect with others going through Rheumatoid Arthritis. I don't have anyone that understands and welcome healthy conversations.
Hello. I want to connect with others going through Rheumatoid Arthritis. I don't have anyone that understands and welcome healthy conversations.
Hi, I was diagnosed 2 yrs ago and have been on so many meds but now my lungs are affected and they are starting me on rituximab. Any guidance on this medicine and how to navigate life when your immune system will be zero and being married with kids. Its going to be hard to completely seclude everyone
hi Fonda,
I want to give you some hope that you may not need to make as many changes as it first seems. I've had RA for 15 years and have been through almost all of the biologics, including rituximab. When I was first diagnosed I was actually working in a pediatric primary care clinic- germ central! I did get my share of illness, but not much more than my healthy co-workers. I get all the vaccines I can (flu and now COVID every year, shingles, and pneumovax). I try hard to get enough sleep and I wash my hands many times a day. I wear a mask, but only if I'm on public transit or in a crowded indoor space in the winter. Over the years I've only had one serious infection, and that was a wound after a surgery, not something I caught from someone else. I had COVID three times, but never bad enough to be in the hospital. Rituximab does put you at slightly higher risk, but it's not like you're having a bone marrow transplant. You'll still be able to cuddle your family and live a relatively normal life. Good luck and I hope rituximab helps you!
Caren
Needed to chat with someone who understands what it's like to suffer and not be able to do things.
Hang in there, Kelly. Everyone here has navigated those feelings. It's really hard. Personally, one of the "little" things I struggle with still is how stinking hard it is to hold up a book. Sometimes I just want to read like a normal human being and not have to get out the propper pillow and the page weight floppy thing. I just want to lie in bed and open the book with my hands. Keep fighting and finding ways to do as much as you can.
Hang in there, Kelly. Everyone here has navigated those feelings. It's really hard. Personally, one of the "little" things I struggle with still is how stinking hard it is to hold up a book. Sometimes I just want to read like a normal human being and not have to get out the propper pillow and the page weight floppy thing. I just want to lie in bed and open the book with my hands. Keep fighting and finding ways to do as much as you can.
It's awful. I usually take a steroid if I really need to do something and go back to pain the next day.
Hello I am Angela. I was diagnosed with rheumatoid arthritis. I am looking for guidance in selecting an effective medication, as the medication my rheumatologist prescribed me gave me serious side effects. Thank you!
Unfortunately I know what that's like.. humira landed me in the ER. It made me a total hypochondriac from all the side effects. Luckily I've been on orencia for over a year and that hasn't given me any side effects! Throwing it out there.
Hi! I'm Linda. I'm from Kentucky. I have osteoarthritis but I had these red hard nots come upon both my big toes on the joints. Today I had noticed one on my thumb at the joint. I had tried to download a picture but I can't figured it out. My doctor knows about it except the thumb. She just said keep an eye on it. I just would like to see RA nodles can't really find any on the Internet.
Thank u
Hi, everyone! I have had RA for over 25 years, but still have questions sometimes. I am in Pennsylvania. I am applying for disability and was wondering if it is as difficult to get as people say. Thanks!
Kandie
Hello Kandie, I have been on disability for a little over a year. I applied for disability, completed the many pages of paperwork. I was approved in 9 Mos. If you have a good Rheumatologist that will stand behind you, as well as sending medical documents of all other health issues you have. It all helps. Basically you have to prove that your health condition, affects your everyday productivity and not bring able to remain employed because of it.
Hello Kandie, my husband (RA for 30 years) was forced to apply for disability due to his health. We sent in all health documents including a letter from his rheumatologist when applying. He was immediately approved for benefits. Good luck to you.
Hello,
I was recently diagnosed with rheumatoid arthritis. I also have osteoarthritis.
I am looking for people to talk to about their experiences with arthritis, particularly
with rheumatoid arthritis.
I am looking to learn what to expect and how to manage the disease.
I'm new to the group, so I don't know how things work yet. I would like to find
a support group thaat meets weekly.
Any infomration is appreciated.
Sunny64
Yes, every case is different. The biggest game changer for me was when I got on Humira. That seemed to put the fire out. The other biggest thing is to get on an anti-inflammatory diet. I have a sizable garden with lots of raised beds that I don't have to bend over so far to maintain. Along with that dozens of fruit trees. When I shop at the grocery store, I generally don't eat things that have a barcode on them. Processed foods can cause a lot of inflammation and pain. Eat healthy and maintain a healthy weight. If you seem to have episodes of pain or a flare, start a food diary and weed through the things you think may be causing trouble.
Hi Audrey. Just saying hello. It's definitely a journey and different for everyone. I got my diagnosis in 2016. It took a lot of time and self-love to get to a place where I feel like I'm managing. Having a nasty flare the last couple of days, so came here looking for conversation, but it's not a super active group. Happy to talk sometime.
Mike, can I please ask you for your kind guidance? Would you mind sharing with me the medications that you are taking? My rheumatologist prescribed me with Hydroxychloroquine but it gave me serious side effects. I would appreciate it very much if you could please share your story about effective medications and thank you so much in advance!
Hi MIchael,
I finally figured out how to get back to the group and found your reply to my post.
I've read therre are stages to rheumatic arthritis. They don't necessarily happen in order to everyone, but
it sounds like health gets progressively worse. I must be iin the beginning stage as I was just diagnosed
after a big flare.
Do you know anything about these stages and what happens in each of them? I'm thinking each indiviaul has
their ownn expereicne of RA, but that there are soem things that happen in common. I'm wondering what those are.
Just trying to get a sense of what is ahead for me and my health.
Thanks so much for replying. Now that I can find the discussion thread again, I iwll check back sooner to see if
you've replied. :-)
Audrey, I have had rheumatoid arthritis for probably 10 years. I may be able to help you with some questions you have about it. I actually have multiple autoimmune issues because it took so long for me to be diagnosed. Hope I can help.
Mike C.
Audrey, I have had rheumatoid arthritis for probably 10 years. I may be able to help you with some questions you have about it. I actually have multiple autoimmune issues because it took so long for me to be diagnosed. Hope I can help.
Mike C.
Hello,
I was recently diagnosed with rheumatoid arthritis. I also have osteoarthritis.
I am looking for people to talk to about their experiences with arthritis, particularly
with rheumatoid arthritis.
I am looking to learn what to expect and how to manage the disease.
I'm new to the group, so I don't know how things work yet. I would like to find
a support group thaat meets weekly.
Any infomration is appreciated.
Sunny64
Hello, my name is Christine McDaniel.i am new to the group. I don't know how RA effects me but it Does More and More stay and I don't know how to handle
Hi Christine, Do you have a rehumatologist to help you with your symptoms? If not, I would receommend finding one, a knowledgeable one.
They can help you with what you are expereincing. II am new to the group and only recently diaagnosed with RA. II hope you can find a doctor to help you.
Hi Anne,
I started on Methotrexate abotu one month ago. I've nonticed my sleep has been disrupted/interrupted a lot since then.
Have you had any problems with that or besides the side effect of tiredness? Thanks in advance for your help!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hi, I am Anne from north Texas. I am new to this group as well. I was diagnosed 4 years ago with RA. Thankfully I am not currently having much pain but I think methotrexate makes me tired. I try to watch my diet and exercise and I think this helps me. Take care, everyone!
Hello, I am new to the group. My name is Deb and I have RA. Does anyone else have lung issues?
Micahel, I am glad to hear the lung inflamation went away once you started on the Hurmia. That makes me hopeful!
I am on methotrexate and folic acid, and until the methotrexate kicks in, Prednisone is keeping the flares at bay.
Do you have any expereince with or knowledge abotu Methtrexate? Thanks in advance for your hlep!
Deb, I have rheumatoid arthritis and ankylosing spondylitis. For years, I would have chest x-rays and the doctors would say I had a lot of lung scarring. They thought I was a heavy smoker, but I have never smoked a day in my life. I had been misdiagnosed so long that the chronic inflammation cause the lung scarring. Is this the issue you are talking about? I used to have a lot of inflammation in my lungs, but that cleared up once I started on Humira.
Michael C
I have had one inflectra infusion and would like to hear from others about their experience with this treatment. I am very concerned about the side effects and am considering not continuing. If you have experiences either negative or positive, I would love to connect with you. Thanks.
Hello all just joined, need some help
Hi William,
I just joined as well and am looking for help and to know other's expereinces with RA.
I am hoping to find a weekly support group, and this is what I first found.
I'd be interested in knowing your expeereince and will check back for reponses.
Audrey
Hi just joined this group today. Looking to connect. I was diagnosed in 2021 and beginning to see some degeneration in joints and limited mobility.
Hi Dawn, I'm 52, in St. Louis, MO and was just diagnosed officially on Monday. I will start Methotrexate (3 pills to start, wants to get me up to 6) and Folic Acid this Friday. I will have some time off from work starting Friday until the 6th of January so I will see how it all goes over this time. Glad to not have to worry about being at work while getting used to the med and dealing with possible side effects. What Dr. do you see? How are things going for you?
Hi Dawn and Terri,
I was recently diagnosed with RA. I have had a lot of pain from it, but am currently
taking prednisone while the methotrexate kicks in.
I am afraid of the side of effects of methotrexate, but also of the affects of the idsease.
I am hoping to learn abotu others' expereince wiht RA and how people manage with it.
I just jo0oined the group and found your messages.
I will check back for responses.
Thanks!
Audrey/Sunny64
Hi Dawn,
I joined a couple of years ago but do not post regularly. I decided to try this again. I also was diagnosed in 2021. I am 52 years old. What is your current treatment plan?
Hi Dawn,
I joined a couple of years ago but do not post regularly. I decided to try this again. I also was diagnosed in 2021. I am 52 years old. What is your current treatment plan?
Sorry everyone, I forgot to say I'm in St. Louis, MO and 53 years old.
Hi. Is this group active? I don't see any events or signs of activity but I'm brand new to this website.
Thanks,
Kendra
Hi Kendra and Christine,
i posted and then couldn't figure out how to get back to the group, but now I have and am back. I am newly diagnsoed, a month or so ago, on Prednisoen until Methotrexate kicks in
and Folic acid that prevents some of the side effects of Methotrexate. I am in Los Angeles and 64.
I am with you on this one. A lot of people are posting, but nobody's responding
I am trying to figure that out as well!
K. How do you put a profile Pic on here. Lol
2nd... Im one year in. 51 and live in Abington PA. I've had every joint pain. As well as jaw and collarbone...grrr lol
But, Id like to know if anyone had there larynx jount swell in your throats due to RA. Happy Sunday yall. God bless
Frank
Frank, I probably had laryngitis twice a month for years until I was diagnosed with rheumatoid arthritis. Sometimes it would last for an entire week. Once I got started on Humira the chronic inflammation stopped along with the laryngitis. My rheumatologist said if it ends in itis it's a condition with inflammation. I have multiple orthopedic surgeries every year and I have to hold the Humira for about three weeks or so during the surgery timeframe. During that time the laryngitis will come back sometime.
Michael C.
Hi all -- I am a faculty member at the University of Colorado-Boulder. I am currently a student in a National Science Foundation program called "Research To Market".
I am doing information gathering to understand the experiences of people with Rheumatoid Arthritis regarding:
(1) what the medications are that you've tried,
(2) what side effects you experienced,
(3) if you changed meds, was that because of side effects, costs, or ....?
(4) do you believe that the meds you are taking will help avoid joint fusion / joint replacement?
(5) Anything else you'd like to share about your life with RA?
Please reply her or email me directly at my university:
[email protected]
I do so very much hope to hear from many people in this group!!
Thank you for your insights and sharing!
all the best - Linda Watkins
Boston, MA- My partner was diagnosed with RA at 30, he is now 63. We have been together 2 years now and I am trying to understand the disease better and find out about support groups that my help my understanding and ability to better support him. Any info or suggestions would be helpful. I love him very much and it is difficult to watch him struggle so much and not know ways to help. Thank you.
Hello Anne,
Any luck finding a support group? I too am looking, though I am the patient, not the caregiver.
But I'd be interested in knowing what your partner experiences and how you help.
i was recently diagnosed with RA.
I will check back for resopnses.
Audrey
Your partner is very lucky. My husband has NPD so I'm on my own and going on this journey all alone is terrifying. In my opinion, hearing "I'm not going anywhere" or " WE will get through this" makes all of the difference in the world. Having some boundaries and an understanding between you is also important to minimize some of the negative feelings that can happen to even the best of caretakers. I'm not far enough into this journey yet to comment on the physical help but that's my advice for the emotional support. I hope your partner realizes how lucky he is. I'd do anything to have someone with me for emotional support. Good luck!
I have yet to be diagnosed - I've been on a waitlist to see a rheumatologist at two different clinics/hospitals for the last three months and my appointments are still 3 months away. That said, I'm 39 and have been living with symptoms, that my general physician believes to be RA since early January of this year. I'm terrified as I wait to find out what is happening in my body, what my options are and what my long-term outlook is. I've had moments where I needed to be carried as I couldn't walk and I never thought I'd be here at this age.
I would love to connect with people to build a community and support group.
Hi Kristin,
I am sorry abotu your struggles, both wiht your body and with finding a rheumatologist you can see.
I am in Los Angeles and have a great one who I beleive is still accepting patients. He takes my insurance
and I only had to wait a few days to get in to see him. If you are nearby, I'm happy to give you his information.
I too am looking to connect with people to buuidl a community and support group. I was recently diagnosed iwth RA
by my rheumatologist. I also have osteoarthritis.
I have struggled with severe pain and my doctor put me on prednisone for until the main medication, mehtotrxate, kicks in.
I will check back for responses.
Audrey
Hello! I am 32 years old and was diagnosed just over a year ago. I am primarily looking for community, and some hope. Does this group ever meet virtually? I would love to speak with others living with RA.
Thanks!
Kyla, I was in a small support group years ago, but as it got smaller, it finally dissolved. Probably about the time Covid came to be. I guess the next best thing is a zoom meeting or FaceTime to help spread information with those that our newly diagnosed and need some answers. I'm not sure if they allow that.
Michael C.
I'm in Michigan too and I'm newly diagnosed 1 year in and 46. I don't know anyone else my age with it and I'm so frustrated.
I'm in Michigan too and I'm newly diagnosed 1 year in and 46. I don't know anyone else my age with it and I'm so frustrated.
Kyla, I live in Michigan. Are you close by? There are PATH meetings for arthritis folks if you are interested. I have not been to this group before but doubt they hold virtual meetings or any other.
Kyla, I live in Michigan. Are you close by? There are PATH meetings for arthritis folks if you are interested. I have not been to this group before but doubt they hold virtual meetings or any other.
Hi! I'm also 32 years old and was just diagnosed a few months ago. I'd love to connect
Dear Group:
I was diagnose a year ago, started on Prednisone 5 mg for two months before going on Methotrexate . Stoped Methotrexate four months later, after losing 20 lbs, including mucle mass. Then put on Lefluomide 10 mg. For a year now have not improved before starting drugs. Had asked to first start on TNF inhibitor.
Has anyone seen improvment on TNF?
Regards,
Robert
I tried Sulfasalazine, Methotrexate and Leflunomide with no results . Humira after over 14 months of chronic knee synovitis helped reduce the inflammation. Been on it 1 month.
So there is actually a blood test that you can take that can prove whether or not your body will respond to a TNF inhibitor. I didn't know this and spent a year on Humeria basically in a flare the whole time and when my doctor finally mentioned it, I was furious that it wasn't mentioned before. I'd definitely look into it before starting it.
So there is actually a blood test that you can take that can prove whether or not your body will respond to a TNF inhibitor. I didn't know this and spent a year on Humeria basically in a flare the whole time and when my doctor finally mentioned it, I was furious that it wasn't mentioned before. I'd definitely look into it before starting it.
So there is actually a blood test that you can take that can prove whether or not your body will respond to a TNF inhibitor. I didn't know this and spent a year on Humeria basically in a flare the whole time and when my doctor finally mentioned it, I was furious that it wasn't mentioned before. I'd definitely look into it before starting it.
Does this group offer virtual ( zoom or equivalent) support groups?
I'm new here but I've been looking around and it doesn't seem like the groups are very active. I was just diagnosed about two weeks ago and I'm in a crisis. I have two kids and a husband with NPD. I'm completely alone in this and I need to get connected with some support to get through this crisis. And I'm sure many others here are or have been in a similar emotional space and really need help. I'll update here if I find anything anywhere that has meetings. For me, in person would help the most but even Zoom would provide some comfort at least in the short term.
Does this group offer virtual ( zoom or equivalent) support groups?
Does this group conduct virtual meetings from time to time so we can talk to each other? I was newly diagnosed in late December 2023. Thanks.
Does this group conduct virtual meetings from time to time so we can talk to each other? I was newly diagnosed in late December 2023. Thanks.
Does this group conduct virtual meetings from time to time so we can talk to each other? I was newly diagnosed in late December 2023. Thanks.
Anyone take Humira? Rheumatoid decays my last choice to try. I have had cancer twice and worried about recurrence if I use this drug. Dr answer was all drugs have side effects.
So there is a blood test that you can take to see if Humeria will actually work for you. Please look into it before taking the leap. I wish I had. I wasted a whole year on it before my doc ever mentioned it. I was furious.
Hi,
I was diagnosed with RA about 25 years ago. It started mainly in my feet and is stil mainly in my feet - the problem is my balance and weakness in my right leg which is less strong than the left because I favor the left (because the foot is less deformed). Now my right leg has 30 % less muscle and seems to be getting worse and worse (ie. wasting away). Has anyone had this problem? I don't want to get surgery because my feet dont really hurt and they are so deformed it would take a year of recovery for each foot. The only thing I think I can do is workout the right leg only to build it up but am curious if anyone out there has this issue and what they are doing about it. Thanks.
Any input on RA medications that help? I've been on infusions and am now beginning injections with Cimzia. Infusions helped until insurance changed payments to doctor.
Valerie,
How are you doing with Cizmia?
Hi!
Is there anyone on here from South Carolina?
Yes My name is Jackie and I am from simpsonville sc
Yes My name is Jackie and I am from simpsonville sc
Yes My name is Jackie and I am from simpsonville sc
Yes My name is Jackie and I am from simpsonville sc
Yes My name is Jackie and I am from simpsonville sc
Yes My name is Jackie and I am from simpsonville sc
Hi everyone!
New member of the group here. I wrote out some of my story but evidentially I took too long to post it and the website signed me out. Gha!
Does anyone know the time limit to post something before you're automatically signed out?
Thanks,
BettyAnn.
I was diagnosed with RA and Sjogrens syndrome in February 2024 after a major flare up. I think I've been dealing with many of these side affects for years but thought it was related to my life style or situations in my life at the time but they never really went away. On one hand I feel relieved to have a diagnosis and a really great care team but on the other hand I'm a few weeks shy of 38 years old and needing to figure out this new way of living.
I am married and have two young girls. I feel like when I was dealing with the flare up and uncertainty of what was happening my husband really step up to care for lots of things but now I feel we are both slipping into old habits that aren't sustainable for me moving forward.
My pain and fatigue have really impacted our ability to connect and I'm having a hard time communicating what's going on with me because it's so new but I also don't know how to find new ways to connect and communicate when at the end of the day I'm beyond tired.
I would love help if anyone has advice for communicating to spouses and continuing to pour into that relationship even when your body seems as if it is working against you.
Thanks in advance!
Hi Emily! I am sorry that you're having a rough time. I've been married for almost 20 years now and we definitely have our valleys and our peaks. But whenever our communication starts to fail, that's when we start to, as well. So I absolutely understand. if you are too tired to communicate at night, is there another time of the day that you can? During lunch time? After work? Are you able to write an email, write a journal entry, or anything like that? I sometimes can't type very well so I use voice to text to help me and it's a great resource. You have to communicate in some capacity every single day. He will have no idea how to help unless you are very articulate and clear in what you need. I set aside a time every day that is "untouchable" which means that nothing can override it. It's usually in the evening, but I have noticed in the winter months, especially, I get in bed earlier and my spouse does not. So I had to adjust that time to another untouchable time slot that we both agreed to. We even committed to waking up early 15 extra minutes each day just so we could start our days together, outlining our schedules and our plans and our needs. Relationships are like a full time job. They have just as many requirements and needs. I wish you luck.
I am newly diagnosed (Jan 2024) with RA. I have been dealing with degenerative disc disease and arthritis in my lumbosacral spine for several years now. I am finding the joint pain situation to be pretty straight forward, but I am wondering about the autoimmune symptoms such as fever, all over discomfort and fatigue, and chills. I get these little spells only occasionally, though they seem to come in spurts. They are usually early evening. I'll feel fatigued, chilled, but slightly warm like a tiny fever. I have not been ill, no other typical illness symptoms.
Has anyone else dealt with this? I don't know if I can attribute it to RA autoimmune or if it's a fluke.
My RA started out with fatigue and low grade fevers every time I overdid it or was too tired. I saw so many doctors....... It wasn't until my wrists got hot and started hurting that I saw a rheumatologist and fianlly got an answer. It is DEFINITELY part of my RA. I still struggle with fatigue but the fevers only appear when the drugs start failing.
My RA started out with fatigue and low grade fevers every time I overdid it or was too tired. I saw so many doctors....... It wasn't until my wrists got hot and started hurting that I saw a rheumatologist and fianlly got an answer. It is DEFINITELY part of my RA. I still struggle with fatigue but the fevers only appear when the drugs start failing.
My RA started out with fatigue and low grade fevers every time I overdid it or was too tired. I saw so many doctors....... It wasn't until my wrists got hot and started hurting that I saw a rheumatologist and fianlly got an answer. It is DEFINITELY part of my RA. I still struggle with fatigue but the fevers only appear when the drugs start failing.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Hello, Julie D.
Im new on here, Recently moved to Ok, but Ive had RA, Adrenal insuff, Dercums Disease and fibromyalgia. @ 10 yrs now, I also have 1 ruptured disc, and Ive had a discectomy. I was recently dcd from the hosp. And Currently on IV meds at hm. D/T Osteomylitis in my spine. It appears The Surgeon left something metal behind during the discectomy thats caused a horrible infection in the bone marrow. Besides all of this, I wanted to tell u, I get chills and what feels like a low grade fever. Its random, like every 4- 6 wks or so, then it lasts about a week, and it happens every night for apx 6- 7 days. I take Ibuprophen n dev cold sweats apx an hour later.
Fatigue is definitely part of living with RA. I think the other symptoms flow from there.
- Lori
Fatigue is definitely part of living with RA. I think the other symptoms flow from there.
- Lori
Hi Julie,
I was diagnosed with RA in 2022 and Lymphoma in February 2023. Thankfully the Lymphoma is in remission but my RA symptoms are back. There are times when I too feel like I'm coming down with something; chills, fatigue, scratchy throat and slight fever in the early evening but by morning I feel fine except my typical joint pain.
so I can relate. My physician doesn't really say too much about it being part of having RA but I don't have another explanation.
thank you for sharing because now I know it's not just me.
Jody
Hi everyone,
I was diagnosed with RA about 10 years ago (at 19) but didn't take it all that seriously when I was in college. I was prescribed hydroxychloroquine at first but then moved to methotrexate but didn't take either consistently. It wasn't until a very severe flare this past Oct-Dec that I started taking it more seriously and have been on methotrexate since then. I have also begun getting more into creating a healthy lifestyle (less drinking (as you really can't on methotrexate), more excercising/walking, cooking, etc) and was wondering if anyone has seen a decrease in pain/stiffness with certain types of exercise? Has anyone seen success with low-impact workouts or yoga? Also, I currently live in Washington DC if anyone wants to meet up in person! Would love to bring this support group into the real world.
Elspeth
I am newly diagnosed ( 2/24) and started hydroxycholorquine 3 months ago. I am also seeing a functional med. expert who has me on a clean protocol which includes removing gluten, dairy, alcohol, caffeine and sugar and several supplements for the gut, hormone imbalance and to cleanse several toxins found in my body. This cleanse and diet should reduce inflammation and ideally eliminate RA symptoms. I noticed RA symptoms were a little better after a few months on drug and gluten free. But the last few weeks I have started the cleanse and have been in more pain. I think and hope it is part of the cleanse and will get all better soon . Curious to others success on hydroxychloroquine or on a clean gluten and dairy free diet or other natural remedies??
I am newly diagnosed ( 2/24) and started hydroxycholorquine 3 months ago. I am also seeing a functional med. expert who has me on a clean protocol which includes removing gluten, dairy, alcohol, caffeine and sugar and several supplements for the gut, hormone imbalance and to cleanse several toxins found in my body. This cleanse and diet should reduce inflammation and ideally eliminate RA symptoms. I noticed RA symptoms were a little better after a few months on drug and gluten free. But the last few weeks I have started the cleanse and have been in more pain. I think and hope it is part of the cleanse and will get all better soon . Curious to others success on hydroxychloroquine or on a clean gluten and dairy free diet or other natural remedies??
I love my water aerobics classes in the warm water pool at the gym nearby. Overall I am stronger in my legs and core and this has had a postive impact on my overall sense of well being.
I swim but must be a heated pool and it reduces muscle tightness. How long on methotrexate? My dr wants me on this drug but info on it is scary. Sounds like a lot of side effects.
Hi Elspeth,
I was diagnosed with RA in February of 2023 but just got my symptoms under control recently in March 2024 with a combo of methotrexate and a biologic. I live in Washington DC and would love to meet up. I've been looking for someone to do low impact walks with around the city!! My email is [email protected].
Swimming helps too!
Hi I find relief and better sleep with yoga.
Hi Espeth,
I'm Jessica I'm 28 years old and was diagnosed when I was 24. I also didn't take my diagnoses too seriously at first and wasn't very consistent with taking hydroxychloroquine. This past December I was in so much pain that I lost my ability to do everyday life activities and I began removing red meat, alcohol, and gluten from my diet and saw a relief in stiffness. I also began taking sulfrasalazine and it's been making me feel better. I've gain my mobility back and have been able to start exercising again. I find that going on walks and strength training exercises have been really helpful in maintaining my strength and reducing flare ups. It's quite a journey though, I recently switched health care providers and my new rheumatologist says I am being under medicated and would like me to start methotrexate. I haven't started it yet but I'm very nervous to get started since I'm finally feeling doing better. I am excited to join this group and learn more about others stories and support one any. I am located in California and would also love to connect with people!
Are there any folks in this group that had lymphoma that is in remission, and then later was diagnosed and treated for RA? If so, I'd sincerely like to connect for a 1:1. Would be great to learn what you were prescribed for treatment.
BACKGROUND: I'm 61 years old and was diagnosed with RA (Seronegative) in March. 15 years ago I had Non-Hodgkins Lymphoma and underwent 8 rounds of chemo "R-CHOP" (The "R" is for Rituxan / Rituxan) and am in remission.
My Rheumatoligist wants to put me on Methotrexate (2.5 mg / 6 tabs once per week. Plus Folic Acid 1 mg/day to help with side effects).
My Oncologist does NOT want me on Methotrexate, because of the potential side effect of causing lymphoma (even though it is a low probability, because I had lymphoma, there is a greater chance I could get it again.
I am taking 10 mg prednisone / day which is controlling the majority of symptoms / pain. (Along with several supplements)
Thank you
Joe let's connect! I was diagnosed with RA in 2022, started methotrexate, collapsed and was hospitalized for a month. After multiple biopsies I was diagnosed with T-Cell Lymphoma and started CHOP in March 2023. I am in remission but my RA symptoms are back with severe flares. I'm only taking leflunamide and Celebrex.
im in Maine but could Zoom.
Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.
Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.
Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
by no later than 3/28 to be considered for this session.
If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional.
Can’t wait to see you on Zoom!
Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
by no later than 3/28 to be considered for this session.
If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional.
Can’t wait to see you on Zoom!
Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease.
I would personally ask your rheumatologist about an injectable. It's done wonders for me. I still get flares but they aren't nearly as bad.
Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease.
I'm considering joint replacement surgery for my MCPs on my right hand, and at the same time, repair of the tendons on that hand to correct ulnar deviation. I would like to chat with, or read articles/experiences written by people who have had this procedure. Where should I start looking for these conversations and inputs?
Hello,
I had to discontinue methotrexate after five months due to adverse side effects. For the last four months, I have been on no medication, but I am experiencing some discomfort for which I am taking acetaminophen. Is anyone else attempting to address their RA without the use of prescribed medications and only OTC pain relief? Thank you.
Martin
Hi Keri D,
What meds do you use? I've tried many Rx's and over the counter meds since 2007.
Thanks, BettyAnn.
Oh, that is an eye opening way of looking at it. Thank you for that perspective.
Hi Martin, I am newly diagnosed (Jan 2024). I had one flare that seemed to correct itself without meds (my rheum scratched her head on that) so I decided to hold off on Rx meds until the next one in case it may be a long time between flares. I have been using heat, gentle stretches for the stiffness, and tylenol. So far it has been in my right wrist the worst for actual pain and discomfort when it does hurt, but I've been able to manage pretty well with OTC remedies.
I'm very new to this, so I don't have much to compare to. I'm a less-is-more person when it comes to drugs but if it gets to the point of interfering in life or being much more uncomfortable than it is, I will take the plunge.
I have heard stories of multiple people not getting the inflammation down by either not taking meds or not being consistent. If your body is in paint and your joints are inflamed there is damage happening within your body that cannot be reversed. For myself, I am committed to staying on meds and changing them as needs to fight the inflammation as much as possible over the years so that it impacts my health as little as possible and work on what I eat, stress, sleep etc. if you are hurting your body is sending you a message.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
I am. Naproxen is my life saver. But would love any other insight on managing without meds
Newbie here to this group and to exploring alternative therapies to heal RA. I'm currently doing protocol of Dr. Brooke Goldner who healed her autoimmune disease of lupus with hypernourishing plus doing low level light red light therapy along with other modalities. Open to hearing others experiences with alternatives - I'm not on any prescription drugs.
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Martin. I am Mary Ann and in my 60s. I would highly recommend that you get established with a good, board certified Rheumatologist. My pain is being managed well now with Metholtrexate (MTX). I get blood tests every three months to make sure it isn't having adverse side-effects on my organs. I am tolerating MTX well and it's allowing me to live relatively pain-free. Although RA is relentless, I am learning that there are things I can do to live with it in peace. Best wishes.
Hi Jan, just joined this group. I have struggled with seronegative RA for 18 years. To the average provider I look pretty healthy on the outside and my labs are negative. There was a day when I was in so much pain I prayed for God to just take me because I just could not function and live, I am on the upswing now. I've-seen 17 providers-3 of those were functional. I encourage you to find a functional medicine provider at ifm.org. I would say diet is a big one-gluten free and possible dairy free could help. I would suggest an elimination diet where you cut most foods and then slowly add them back in while writing down what your symptoms are. Cut processed foods (that's chips for me) and taking 5g of fish oil-liquid or pills per day seems to help me. Yoga and Cryotherapy also seems to help. I can't quite subject myself to cold plunges. i hope this helps you.
Hi Jan,
I’m a 70 year old recently diagnosed with RA. I’m trying many things – anti-inflammatory vitamins, stress reduction, and minimal OTC pain relief. I would really be interested in learning more about any other non-medication approaches for controlling RA. Thank you.
Martin
Hi everyone,
I'm new to this group. Looking for more support and connection with people who get it. I struggle with the invisible aspect of this disease, not wanting to complain, but need support.
I was diagnosed with RA at age 22, more than 30 years ago. I had good luck with Enbrel till Covid, now trying diet changes (gluten and dairy and sugar free as much as possible) and herbal stuff.
My New Year's resolution is to get back into water aerobics. Does anyone in the Denver, CO area know of a good warm pool with aqua aerobics?
Cheers,
Melissa
Hi Melissa
I know! It is "invisible," right? So, when I try to talk to people about it, I just get blank stares because I "look" healthy. People need to know that not all diseases are visible 👀. Some people are really suffering inside physically and psychologically.
Happy Hump Day! I just joined this group today to hopefully help and get help from others. I have been receiving treatment for my RA for over 10 years and it has been having more flare ups, more medication and more pain. I want to find a way to help myself with better self care without feeling like my body has been abandoning me. I must find a way to keep my "can do" attitude in spite of my health issues. I want to know how others have been able to keep a positive attitude, keep working, provide self care, and love my body where it is at.
I just joined today. I was diagnosed about 13 yrs ago. I am trying to deal with the diseases, grief, and loneliness. I am hoping to find some help here and some people to connect with outside of the group. Please help me guys. Thank you
Hi Michelle
You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?
Hi Michelle
You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?
I just joined this group today and am looking forward to being part of a group of people living with RA. I was diagnosed almost 2 years ago and have been on hydroxychloriquine since the diagnosis. Until recently, I was blessed with being mostly "asymptomatic". Lately, I have had a good deal of pain and swelling in my hands and feet. I'm noticing more fatigue than usual and am wondering what will be coming next. I don't know what to expect even though I've done a lot of online research; I may be information overloaded at this point. I find myself feeling a bit down. Just wanted to introduce myself and say hello.
Hi, just joined this group, and was hoping that someone has used a more natural way of managing pain. I have been on every medication out there for RA and is very concerned about the side effects. I have been off the RA meds for about 6 months now and is managing the pain with low dosage of predsonine to function on a daily basis. I am getting ready to retire and medicare does not cover any of the RA mdication so I would not be able to afford.
Hi Barbara - I just joined this group and read your post from December. I am doing hypernourishing - it's explained on Dr. Brooke Goldner's website - she healed herself of lupus and kidney disease with her protocol and it has definitely helped me already. I am also exploring other alternative and complementary therapies for RA.
Hi, Barbara! I just joined today and saw your post. I am on Medicare and was prescribed Xeljanz, but couldn't afford $12,750 for 30 days at 5 mg. twice a day. I was able to qualify for 'Medicare Extra Help' and they covered the full cost. It also covered the $700/mo I pay for inhalers. Maybe you've already looked into it, but I should have applied much sooner. My best to you. Happy New Year!🙋♀️
Hi All,
I've been living with RA for 5 years and still struggle with medications that don't work that well and the worry of how these meds affect my body long- term. Would anyone in the Chicagoland area like to meet in a group and exchange experiences about RA?
I am new here and was just diagnosed with RA and lung disease. I am thankful that you are all here and I am not alone. What to do next is what is spinning in my head. My career and life have come to a hault.
Hi, Jason! I know exactly how you feel. I have been living with NSIP and ILD for 20 years. What is your diagnosis?
They have treated me with large doses of prednisone because it's the only medication that keeps my sat rates out of the 70s (most of the time). Of course I've complained about joint and muscle pain for years, but my RF and CRP are always negative. Literally, months ago I was finally diagnosed with Seronegative RA, CPPD, and several spinal problems. It is a lot, so I relate. I would love to connect and share advice on positive actions and strategies. Happy New Year!
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Thank you for sharing this. I have had numbness and tingling at night and was not sure if it was related.
Hello again, Jason. I hope you saw my lengthy reply to Tia. Maybe there is a take-away from my mistakes. I hope you are feeling ok today. Take care.
Hi, Tia! Happy New Year! I'm not sure if my problem is the same, but I want to let you know my experience, just in case.
So, I will be 60 in a few weeks. I have been ill all my life, diagnosed with lung disease at 40, recently with Seronegative RA and Spondylitis and Sponythesis (all the types of spinal arthritis). I have been telling doctors about the numbness and tingling for years. They always blame it on my medication. It became so severe in hands, feet & legs that I sought out a spinal surgeon. Tests (CTs and MRIs) confirmed multiple areas of spinal stenosis. She ordered surgery that my pulmonologist isn't sure I can survive.
My advice, don't wait to talk to a spinal specialist. She also told me that arthritis makes bone look more dense than it really is -- so don't trust your DEXA results (like I did). Even my UCLA rheumatologist (from STANFORD) didn't catch my stenosis. I have Medicare but I was able to make an appointment without a referral. There are treatments if you can find the right doctors, and get the right diagnosis soon enough.
Please let me know how it's going. My best to you!
I experience this all the time. I was just diagnosed recently too and am having all the same symptoms. I am new here and still learning about this . I am just glad we are not alone. It is nice to know this site and people are here. Thank you for sharing. I am still learning , but am open to anyones thoughts on what to do next. Long road ahead and doing it alone is not fun.
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Not sure how to best get involved but I'd like to! I was dx with RA in early 30s, now late 30s and I understand a bit more, but still feeling the symptoms on a daily basis and looking to connect with others who "get it". I'm exploring a healthier diet and take med (hydroxychloroquine) my rheumatologist recommends. Finding it hard to exercise, mostly mental to be honest! Looking for ideas for what others do. Things that work well I've noticed is ginger tea, walking outside laps in my neighborhood for a bit, getting a massage focused on challenge areas. I also find epsom salt baths are really nice (I'll try to do them in the morning to up mobility for the day) and then trying to be kind to myself when I need to rest. I'm reading your posts too! I'll try to reply to some, excited to hear what people have to say.
Hi, new here. I have had arthritis for over 10 years.
Here is the link for tonight's meeting
https://arthritisfoundation.zoom.us/meeting/register/tZwtdu-srD4tE9W8tEVEmslw_g22-eqaPrZu
Not sure if there are meetings or if the support is through chat/posts? Just getting acclimated and thought I'd ask in case someone knows!
Will there be more meetings? Thank you
Hi..I have had r.a. for about 10 years, due to a sore because of Covid I am now off off of all my medications. My mobility is very impaired. I swim daily, but sadly that must stop, due to the change in weather. I am looking for a good, but interesting exercise program, P/t is not an option at this time. Depression is a real problem. If anyone has a good idea please let me know. This is my first experience with a chat group and I wonder what I should post.Thank you
This is my first experience with joining an on line support group. What I would like as well is an in person group. Any ideas?
I am in Nassau County NY.
Ok, I just posted before reading other posts and was perhaps too vague. I've recently been diagnosed after 6 yrs of confusion, depression and minimizing docs. I found a wonderful doc - but now that the pieces are coming together about how all my symptoms come from this one disease- I feel very alone in it. Online groups would be so helpful for me but do not know where to look and find.
Are there online , peer lead support groups?
Hi Everyone ! My name is Liz . I was diagnosed with RA and Fibromyalgia about 8 months ago. I have seen a few drs and working on diet changes. I have seen some changes with diet change but its so hard to stay on track. Anyone have any relife with diet change? I would love to share some recipies that I have created if anyone is interested in them =)
Elizabeth, I will take a recipe post! I just bought the book, anti-inflammatory diet book: https://www.amazon.com/dp/1623159040?psc=1&ref=ppx_yo2ov_dt_b_product_details. Maybe you are interested the link is amazon but I also got it from my library first to see what it was like.
I'm slow on making changes but I'm also getting a healthy meal subscription to just help me get started (it'll send you snacks, meals with easy prep). I have arthrisis in my hands and so meals are TOUGH, I don't like chopping/standing cooking for long so this is helpful. If people are interested I can post the link to what I use here as well.
Hi all, any suggestions for pain management outside of medication?
We have a local farmer's market and a woman had a stand with CBD lotion to ease muscle pain. I don't use any other CBD products so I asked her a lot of safety questions before buying and used that day when I got home. It was really nice and I liked the smell (mint/winterfresh). I don't know if you can look into CBD lotions but I was skeptical but found my lower back and hand pain was eased. My other thought is epsom salt baths if you can. Put a lot of salt in! I did for awhile but didn't put enough to make it worthwhile.
I don't even get pain meds. I take tylenol. My doctor says to. But I still hurt.
I'm just six months into a definitive diagnosis of RA. I have dealt with OA for 30+ years, I have bilateral knee and shoulder replacements to prove it. With the recent RA diagnosis, I have weaned off of a 25 year Celebrex habit. We tried Plaquinil but it did nothing. Now I am two months into leflunomide, which I think is helping some but I can't decrease my prednisone any further that 10mg daily or I flare. How long did it take you to find something that really helps?
Hello Dee, I don't anything that helpful to write other than I get it! Finding the right meds so hard! I've been taking Plaquinil for almost 2 yrs and I'm so unclear if I'm supposed to notice a difference or not. I think maybe a little in my joints? It's hard to tell and then I wonder if it just more preventative. I'm kinda bummed out because my anti-anxiety med for stress that I was on is on the "counteracting list" and I have a different SSRI that's not very helpful. All in all I'm taking two "meh" meds and not sure if I should swtich. I have a new RA doc I'll see April 2024, I'll ask him but just posting here in case people have idea/suggestions!
Hi. It took a years treatment and 3 failed medications and finally Kevzara helped mine to a fair degree.
I recently took a trip to the mountains and realized I couldn't do what I used to. Hiking, biking, etc. all difficult.
I found myself in deep grief. Like someone had died. Me. Anybody experienced that?
YESSSS. I get it! I feel that way too! With hiking, or gardening, playing with my kids, doing normal chores that now wipe me out physically, walking is even slower. I try to keep things a "day at a time" even though that probably sounds so contrite. I truly am grateful I don't have something that's a immediate danger, but the slow progression is sad because I feel it in my quality of life. I tell my partner I feel like 30 yrs older than I am and it sucks. When I feel like this I try to fall back on what I can do/still enjoy. For me that's walking outside, but yes it absolutely is grief because the life you thought you'd have isn't it anymore and it makes sense if you're sad or angry! I would just feel that and let it be. People out there are having the same experiences, you aren't alone in it.
Hi Leslie! I was just diagnosed in May 2023 and am 57 years old. I find the mental toll most difficult. I was already on depression meds for years related to a car accident and chronic pain. I'm angry with my new limitations ( I don't like it when people tell me what I can and can't do). I find my mood is down most of the time and crying almost ever day when I can't do something. My feet are the worst and was referred to a foot & ankle doc. She gave me a cortisone injection I'm my right big toe joint and padded both my shoes for the ball of foot pain. I live on the east coast of Florida and LIVE in flip flops, not the cheap ones, the ones made with good arch support and thick padding. My doc said "no more flip flops". I also love to walk on the beach several times a week, that's my "me" time. My doc said no more beach walking. I'm crushed physically and mentally. I don't feel like Tracy anymore and I can relate to how you're feeling. I'm reading a book, "A Patient-Expert Walks You Through Everything You Need to Do and Learn". It is her story through the years and her journey with RA. I can barely get though a few pages at a time because I bust out in tears as it starts with what you and I are experiencing at this moment. I feel uninformed, lost, angry and filled with dread. When we're you diagnosed and how are you dealing with the mental aspect RA creates?
Tracy S
I'm sorry nobody responded to you sooner. I think we all go through this "deep grief" feeling at some time or another. For me the feeling seems to modulate from greiving the person I used to be to feeling grateful to be alive and finding joy in the everyday things. There's no doubt that my world does feel smaller now than it did ten years ago but I'd still rather be in it than not. I hope it helps to know you're not alone.
Yes I am going through the same thing. It is so hard when you are not even able to do those little things that bring you so much joy .
I definitely understand what some of you are going through, hopefully we can help each other.
I was in severe pain after changing my diet not that I was not in pain, but change in diet may or may not have cauesed extreme flare ups. Time to see doctor.
I am going back to Mediterranean diet. I have been on Prednisone for 1 1/2 months now. Great difference in being able to move and work, which I could not do two months ago.
Now Doctor is looking to put me on Methotrexate very low doses and looking to start on Infusion drug. Drug administered evey two months. I have put off for a month weighting the pros and cons.
Have any of you had experience with Infursion drugs ?
Robert, I have been on various infusion drugs. They are not all the same and it took a number of different drugs over many years to find the right one. So go ahead but don't expect miracles, for me it was a journey, no an immediate solution. Good luck
I have had Remicade infusions every 8 weeks since 2002 and have had no side effects from the infusions. I also take methotrexate weekly and folic acid. My recent blood work indicated that the RA is under control, however, I still suffer from pain at times and have lost balance and have to use a cane or walker.
Robert - I've been on an infusion medication for 2 years and it has helped slow the progression a great deal. One needs an open mind to find what works. I was on Remicade, and it did nothing for me. My rheumatologist switched the med to Orencia and that is working well for me. My own experience says this is easy to say but hard to do for people in our situation, and that is: have patience. Sometimes my body screams in pain, and I know now what ever action I choose is going to take some time to impact the pain. Best of luck to you.
Hi, My name is Marcia and I was diagnoised with RA, seronegative almost a year ago. I'm 71 and take methotrexate, 8 tabs once a week. I have really appreciated all of your contributions and have compassion for all of you. Recently I lost 10 pounds without trying within 1-1.5 weeks bring down to 112. I've not seen information on this but would be grateful for information or if you have experienced this as well. Also, is there a newsletter through the foundation, and if so, how do I sign up?
Thanks to all of you and may we strive to keep having a postive outlook in our journies.
I have seronegative RA too. I'm due for a doctor visit but I don't see the methotrexate working yet. I'm on 6 pills w/folic acid since April. Honestly, prednisone seems to be the only thing helping.
Hi my name is Fran & i am 71 was diagnosed with RA in January of 2023. I am taken methotrexate 8 tabs & weaning off of prednisone my fingers are the problem The prednisone keeps my RA at bay but all the doctors want me off it. I have dropped 10 pounds since this all started but it's not the meds. I was on & still trying a plant base diet. I went cold turkey. The meds for me had nothing to do with my weight lost. The diet did it The diet did helped me cope with the pain until the methotrexate kicked in. I'm still working out what's the right meds for me. Good luck
I take Cimzia and recently complicity cut funding down for my copay assistance. I now have $2000 a month copay. Have been calling trying to find help. I was wondering if anyone had a suggestion on where is a good place to find coverage. I've called quite a few places with no luck. Any suggestion would be helpful
Thanks
Gail
I also take Cimzia and didnt know this could happen. I'll look around for you. Good luck ❤️
Nina
Jen B
Hi all, my name is Jen and I was diagnosed with RA back in December of '22. I had a few flare-ups, but it was manageable until April of this year. I was on hydroxychloroquine for two weeks, but it made feel like I was coming down with something generally sick, lethargic, incredible bloating, nausea. Does that go away? My doc stopped it because I has having severe bluryness but it turns out it was occular migraine. While off for 5 days the RA was twice a bad, so I guess maybe at least the hydrooxychloroquine was working.
I'm also wondering if anyone knows if there is a connection with prediabetics becoming diabetic due to the plaquenil?
I'm glad to have you all to talk with about this.
Hello all,
Any insights or guidance on finding financial assitance for bio-logic or bio-similar drugs? Amjevita is working well for me, but given the coverage gap (Medicare), I will soon not be able to afford it.
That being said, I am thrilled to be able to move without pain again.
Jeanne
Most of the biological have copay cards through the manufacturers. Your Rheumy may have info on it or you can google it, I found my last one for Orencia by googling it. Also, ask the pharmacy, they are usually very helpful.
Good luck!
Hi. I'm Shanna, I'm new to the group. New to RA, too. Just looking for someone to talk to about all this.
hi, Shanna! I am new too and sometimes just super overwhelmed by everthing. I have been on plaquenil for about a year now, when I was offically finally diagnosed with RA.
It's a lot to manage, just take it slow and choose one thing at a time. For instance, diet was the first thing I tackled to see what my triggers were for inflammation. For me, it was tomatoes, bell peppers, rice, and sometimes dairy. I already don't eat gluten or sugar, so I found that easy to adapt.
Hi all. Diagnosed with rheumatoid arthritis 4/2022. Taking hydroxychloroquine now, but started to feel pain after 10 months. Still on it, but taking prednisone too.
dr wants to add/change to methotrexate, but heard it has bad side effects. Did anyone have any luck with sulfasalazine?
thanks!
Heart burn, hair falling out, still have swelling and pain. Nope, I'm wondering if methotrexate is working for me. Been on it since April on 6 pills.
Most dr's have you take methotrexate early on as the insurance companies require it. The low doses we take for RA aren't so bad, but you do have to avoid the sun. I wasn't on it long before it failed for me because it has dairy in it and I am allergic. But, you need to take folic acid with it.
Hi I'm new in this group. Is there anybody here who live in Broward Country, Florida who could recommend me a good Rheumatologist? Thank you.
Thanks for including me in this group
I feel the same. It's nice to find a place to talk, maybe, right? I'm Shanna by the way.
Is there a zoom get together or support group meeting of any kind?
I have been dealing with increasing pain for over a year. My mothers has RA and my brother has Ankylosing spondylitis. My blood work does not say I have RA. I've even been going to specialists at Duke (endocrinologist) and they have no idea what is going on. I do have a rheumatologist and he is treating my pain but at this point don't have much of a diagnosis. I'm wondering if I have early stages of RA or a serum negative type. What should I ask at my next appointment. I have sore joints and so much fatigue. Some osteoarthritis as well. I def have flares. At this point I'm willing to try RA treatments (btw, steroids make me feel better when I've had them for my asthma) but know that insurance will need proof.
Hi, my name is Amanda Whiting. I've been living with RA for 24 years now. I've been out of the work force now for 7yrs; after multiple surgeries including knees replacements, rotator cuff repair, even surgery on an eye due to inflammation called scleritis. My life as I knew it and envisioned it was over. Depression and anxiety set in. I've been in a healing journey and am looking for support groups in AZ. I'm on social media trying to create community because I know there is strength and healing in having support. Does anyone belong to a support group in AZ or virtually that is active. It seems like these platforms are ghost towns... not active. Does anyone know of any other org and agencies to reach out to? My goal is to facilitate a support group with regular meetings. We need to feel support and a sense of belonging. I know I sure could use a friend who really understands what I'm going through. I'd love to be the same, a listening ear to another RA warrior.
Amanda.
I was wondering if you found a support group in Arizona. I live in Arizona and would love to be part of a support group. I have seronegative RA. I was diagnosed 2.5 years ago. In the back on my mind, I did not really think I had RA. But the last few weeks I have really started hurting and My knees were warm and my legs have been throbbing. Any update would be appreciated! Thank you
Hey Amanda,
I've had trouble finding support groups. The most luck I've had is through HeyPeers. There's a chronic illness group based out of Washington State that holds multiple virtual nation wide support groups on HeyPeers. Other than that, I'm still searching.
Hi Everyone,
My name is Cory. I was diagnosed with seronegative RA in 2020. I got really sick in December 2019 (I believe it was COVID) and my knee swelled to the size of a grapefruit. Then my other knee did the same thing a few days later.
The first rheumatologist I went to said it was an illness related arthritis and that it would go away. I didn't buy that.
I got a second opinion and she's now my current rheumatologist. What's working for me right now is methotrexate and Enbrel. I used to hate needles. Now they don't bother me.
I had to get a permanent handicap placard for my car. I get looks all the time from people thinking I shouldn't be parking there. I had one guy write down my license plate number. Makes me feel awful.
Anyway, I'm here if anyone wants to chat.
Hello Cory,
I am new to the group today. I was diagnosed in 2019. Currently on methotrexate and Humira although was on Enbrel for a short time. I don't know anyone else personally with this and was hoping to speak with someone like yourself who is managing though this. Let me know if you would be interested in having a short conversation.
Can you tell me how you were finally diagnosed. I believe I have serum negative but not sure what to ask for.
31 y/o adult who has been fighting for a diagnosis for 5 years. The doctors have recently realized that I have RA and not MS. I was curious if anyone else has severe nerve issues caused by RA and if so how do you treat it? They've tried Nortriptyline, Gabapentin, Lyrica, muscle relaxers, Meloxicam and topical medications such as lidocaine but I have a sensitivity to serotonin medications so have been relying on heating pads, tiger balm and capsaicin to manage the excruciating nerve pain. Also, anyone who just wants to chat is welcome to reach out 😺
My Dad had great relief with a mixture of frankincense, peppermint oil and put into a coconut oil. He would rub into his legs once a day. He was also on gabipentin too but this was life chanfor him. Make sur eyou buy good quality oils. Cheaper ones didn't work as well.
Hi Amy, I'm 59. I do have some inflamation and neuropathy. May I ask what is a steroid taper and does it work? My blood test for RA is positive but I have not seen a Rhuematologist yet. Still looking. Sorry to hear about your nerves. Do you use heating pad to reduce the swelling?
Hi! The only thing I've found to help with my nerve issues was a steroid taper. When my RA is really bad, the inflammation compresses my nerves. Nothing else really help and the neuropathy is terrible. Happy to connect more, I'm 40 y/o and have had RA for 8 years.
Hello! My name is Desra and I'm from Central PA. I am 48 years old and was diagnosed with Juvenile Rheumatoid Arthritis at age 3. All my joints are affected. I was diagnosed before biologics, resulting in me needing hip replacements, a knee replacement, neck fusion and more to come. I have friends in Arizona who are about the same age as me and have similar stories as mine. I'm really looking to meet some people from my state of Pennsylvania though, who also share a similar story as mine, and to get connected. I like reading, playing ukulele, gardening and stoicism. I'm always striving for better health, physically and emotionally. I would really love to meet some RD kindred souls.
Hello!
My name is Karyza (pronounced as Carissa), I'm 24 & I was diagnosed with RA in March 2021. I was perfectly healthy & had no health issues until I got Covid in Jan 2021. It triggered RA & now I've been learning how to live with it for the past 2 years. Sometimes I feel like I've got it down but then I get a flare up or really bad morning stiffness/pain & it makes me feel like I don't know how to cope with it. I'm currently on celebrex & Cimzia (after trying Humira, methotrexate, meloxicam, & Enbrel). It's hard to see how I was once very active (rock climbing & doing CrossFit) to having days where I can't go to work/get out of bed. How do you guys do it?
Hey Cory & Karyza,
Similiarly, I was extremely active before my diagnosis and had difficulty adjusting. Somedays I rely heavily on my motorized wheelchair, but do get anxious in public using it as strangers tend to be judgemental of invisible disabilities. The assumption that if you use a mobility device you must never be able to walk is overwhelming sometimes.
I often make plans for myself when I am between flares, and find myself unable to achieve these plans once my flares start up again. I suppose to answer your question. I often sit down and write lists of things that I'm still able to do when I'm having a flare. Like, while I'm unable to go hiking I am able to lay in the sun or do stretches. Or on days when I cannot use my legs, I can still do model kits and do small art projects. My therapist calls it reframing self-care. Finding mobility assistance devices, medications and topical solutions also help.
I'm 38 and I was diagnosed with RA in my knees after being very sick. I'm in the middle of a flare. I'm on methotrexate and Enbrel. I was very active too. It's awful how much you miss doing things when it's gone.
My first visit with a rheumatologist was not good - no real exam and was given 2 choices of medications, methotrexate or humira. I am waiting for authorization to a different rheumatologist. Reading all the different experiences with the medications is mind boggling. I want a quick and easy fix and it does not seem as though that is possible with RA. Very disappointing indeed.
I hate to disappoint you Mary Ellen, but there is no quick and easy fix, and it only gets worse. My initial diagnosis was nearly 40 years ago when there were no treatments so the doctor shrugged it off. I was rediagnosed after complications from a simple knee procedure set in. I came to understand that besides the joint pain so many nagging issues (from TMJ to hearing loss) were all part of my RA, 8 years later and I'm really struggling. I'm about to have my first (of two) knee replacement surgeries (a contributing factor is that I was born with deformed legs and while they were "fixed" enough to appear normal, I've never walked properly.
Auto-immune disorders (of which I have 3) get less attention than other conditions. The initial/basic medications weren't even developed for RA but for other diseases - malaria and cancer to name two - but serendipitously they were found to help with RA. The cynic in me (and as someone who has worked in HR/employee benefits consulting for years, consulting to some of the country's largest employers) says that there will never be a cure as long as pharmaceutical companies can charge $4k, $5k, and so on per month for "treatment."
Switching gears, does anyone know of any in-person support groups? I'm in the Austin area and would like to find one.
I hate to disappoint you Mary Ellen, but there is no quick and easy fix, and it only gets worse. My initial diagnosis was nearly 40 years ago when there were no treatments so the doctor shrugged it off. I was rediagnosed after complications from a simple knee procedure set in. I came to understand that besides the joint pain so many nagging issues (from TMJ to hearing loss) were all part of my RA, 8 years later and I'm really struggling. I'm about to have my first (of two) knee replacement surgeries (a contributing factor is that I was born with deformed legs and while they were "fixed" enough to appear normal, I've never walked properly.
Auto-immune disorders (of which I have 3) get less attention than other conditions. The initial/basic medications weren't even developed for RA but for other diseases - malaria and cancer to name two - but serendipitously they were found to help with RA. The cynic in me (and as someone who has worked in HR/employee benefits consulting for years, consulting to some of the country's largest employers) says that there will never be a cure as long as pharmaceutical companies can charge $4k, $5k, and so on per month for "treatment."
Switching gears, does anyone know of any in-person support groups? I'm in the Austin area and would like to find one.
I hope you find a doctor that will listen. My second rheumatologist listened and performed tests. I was diagnosed with seronegative RA.
Hi Mary,
Sorry your first visit did not go well and that you soon get your authorization for a new doctor! It is disappointing that there is no quick fix, but sadly it can take a while to find the right "mix". But please don't give up hope!
I am not a doctor, so please don’t consider this medical advice. I was diagnosed in Aug 1996 and it does take some time and I have been through several different meds and tried different things. It’s not perfect, but it definitely is better! Also, what helps one person may not help another. I have learned over the years that sometimes I just need to take care of me. It’s not always easy, or even always possible, but sometimes you just have to tell people “no”
The Arthritis Foundation can provide a good source of information specific to RA:
https://www.arthritis.org/rheumatoid-arthritis-patient-education
There is also a help-line: https://www.arthritis.org/helpline
1-800-283-7800
My number is 703-473-3966 and I am on the East Coast
Glad you found us!
Lisa
I am a 70 year old female and have had RA since 2004. This mainly affected my hands and fingers. I was a Family Nurse Practitioner and I could not push the plunger on a syringe. I was initially started on plaqinil which did not help. I started on methotrexate which helped a bit. Then Enbrel was added to the methotrexate and practically overnight I was in remission. Many years ( over 10 years) went by in remission. Then methotrexate was stopped. I did well until one Christmas holiday I was late on on an Enbrel dose and soon I went out of remission.I wonder now if they had restarted the methotrexate I would have gone back in remission. I was started on Humira and this did nothing. I was started on Orencia and methotrexate and was back in remission.
I am a 70 year old female and have had RA since 2004. This mainly affected my hands and fingers. I was a Family Nurse Practitioner and I could not push the plunger on a syringe. I was initially started on plaqinil which did not help. I started on methotrexate which helped a bit. Then Enbrel was added to the methotrexate and practically overnight I was in remission. Many years ( over 10 years) went by in remission. Then methotrexate was stopped. I did well until one Christmas holiday I was late on on an Enbrel dose and soon I went out of remission.I wonder now if they had restarted the methotrexate I would have gone back in remission. I was started on Humira and this did nothing. I was started on Orencia and methotrexate and was back in remission.
Hi, I'm Nicole. I'm 32 and have had RA since I was born (although they first diagnosed me at 5 when I couldn't paint my mom a hand turkey for thanksgiving). I was a child miracle by doctors because I was able to stay active and ride horses and even went into remission from ages 17-23. My RA is now back aggressively and I've been through methotrexate, enbrel, humira, actemra, and now on rituxin...in the past month I've become almost bedbound due to being unable to get out of bed...I'm scared of needing a wheelchair and full care soon...
Hi Nicole,
So sorry things have gotten so bad and I wish I had an easy answer for you.
I understand the medicine roulette – been through so many myself. Hopefully they can find the right mix.
The AF has a help-line: https://www.arthritis.org/helpline 1-800-283-7800
Lisa
RA Support Group, Lead Co-facilitator
Hi! i just joined this RA group...Im 26, and looking to make some friends who experience what we do...i was diagnosed with RA a year ago and clearly its a life long battle...Im really into tiktok, if you want to message me there and connect my username is @shoang26
I was diagnosed a few days ago with RA. My rheumatologist offered 2 treatment plans - methotrexate or humira - and told me I need to decide how to proceed after talking with my family. How can that be? I have no medical expertise. What I have read about these treatments is scary. And then I wonder if there are homeopathic remedies or alternative treatments. I am floundering her and am VERY sad.
Initially, at a time my RA was already in the "moderate" category, I started with a mix of oral medications. That helped a little but after a year my rheumatologist said I should be feeling better (and my numbers should be better too) so I switched to Humira while continuing to take methotrexate. After about 4 years Humira stopped working. I'm now on Orencia and methotrexate.
The biologics are expensive. If you have employer-sponsored health insurance, your plan should pay most of it and you can request a "copay card" from the manufacturer which will take your copay down to as little as $10, even $0! If you have individual health insurance, your request for this medication will most probably initially be denied and you/your doctor will have to appeal. If your insurance will absolutely not cover it, and you make no more than 200% of the Federal Poverty Level, you may be eligible for a "grant" from the manufacturer, who will provide it at no cost to you.
Hi Erin,
What great advice. A team is definitely needed. Thank you for contributing!
Lisa
RA Conect Goup Co-Facilitator
Hi Mary Ellen,
I am one of the Facilitators for the RA group and as such cannot provide medical advice; I just have RA as well!
The Arthritis Foundation can provide a good source of information specific to RA: https://www.arthritis.org/rheumatoid-arthritis-patient-education
There is also a help-line: https://www.arthritis.org/helpline 1-800-283-7800.
Glad you are part of our group!
Lisa
Being a Nurse Practitioner when RA hit me, my rheumatologist had me watch videos on Enbrel. Even though there can be serious side effects I have not had any except losing hair and mouth sore due to methotrexate. I am now taking 3 tablets of folic acid and these side effects has calmed down. At the time when I was diagnosed in 2004 drugs like Enbrel were just being introduced. So there is a long history on Enbrel.
I understand how you feel. When I was first diagnosed I was bombarded with a bunch of medications including methotrexate and Enbrel. At the time it wasn't what I wanted so I tried alternative options. Now I'm currently on Enbrel and I haven't had any issues so far. I'm still trying alternative options which was stem cell therapy 6 months ago. I had the biggest improvement with stem cells. But the biggest advice I could give is get a team together. Get connected with a mental therapist, physical therapist, massage therapist and etc. That is something I wish I would have done when I was first diagnosed. You're going to be ok.
New here. This group doesn't seem to have regular meetings. Is it me? I'd be willing to facilitate, but don't know how to get info on how.
I just joined too....
Hi everyone! My name is Dee and I am a caregiver of my partner who has rheumatoid arthritis. My partner got diagnosed FINALLY in July 2022 after so many doctors had told her the pain was in her head or she had something else like Lupus. Now that she has found a steady cocktail for her RA, she has been feeling way better but is not where she wants to be. The problem we are having now is "normalizing" our lifestyle. She feels bad that she can't do more and that I seem to be overworked with chores and errands. I feel bad that I want her to do more as well, but eventually, I am going to feel burned out.
Does any have suggestions on tools we can use in our relationship to better communicate with each other so she doesn't feel "worthless" and I don't get burnt out?
Please let me know as well!
Hi Kadeesha,
Welcome to the group. We are actually looking at starting a group for couples or caregivers but that will be later in the year. We are planning on doing a meeting specifically for couples in the coming months so keep an eye out for that. My husband and I have issues with normalicy. You are definitely not alone. Keep supporting one another and know you are doing the best you can for each other. I will let you know when we have a date for the couples meeting.
Hi my name is Kathy, I was diagnosed with seronegative rheumatoid arthritis in 10/21. I'm currently on Orencia infusions. I just started about a month ago. How do people deal with risk of infections? I wear a mask and haven't been sick since January. I constantly wear a mask and social distance but feel awkward about it.
I wear a mask all the time too Kathy. When people don't see a mask on they say "I didn't recognize you without a mask." It's hard.
Hi, my name is Fabiola. I've been having joint pain since I was 10 years old, but was constantly told that it was growing pains and eventually it worsened, leaving me depressed a year in highschool. I just recently got diagnosed this January with Rheumatoid Arthritis, all I've been taking is Naproxen and have not yet received any sort of treatment. The doctor I go to is pretty far, and it has been a constant struggle with transportation but she is great. I hope that with future treatment I learn how to cope, it's just scary. Thanks feel free to contact me with my email [email protected] :)
Naproxen? Really? That's all?
Hi Fabiola! Im new to this group and also just got diagnosed with RA in February after a long time with unexplained pain and joints swelling. It's a lot to get used to. I'm glad you have a good doctor, even if they are far away. I kept a pain journal for a few months and shared that with my doctor to help her understand how much I was feeling and that celexicob was not helping enough. I'm now on hydroxychloroquinine, and testing that out for a few months. From what I understand, it can take some time to find the right medication. Wishing you less pain and a good solution soon!
Hi. I'm Beth, and I am new to this group. Has anyone been living with Rheumatoid Arthritis for over twenty years? If so, I'd like to connect with you. I'd like to talk about long-term effects of living with this condition. I'm looking for some guidance. Thanks.
Hi Elizabeth. I have had RA for about 35 years, though I went untreated for most of that time because initially there were no treatments and so I forgot about it. I was "rediagnosed about 8 years (and much damage) later. Happy to chat.
Hi Beth! I'm also new to the group. I was born with rheumatoid arthritis and will be 36 this August. Reach out if you have any questions
I am on intravenous biologics and have horrible veins. Recommended to have a port put in. Pros and cons? Does anyone else have one?
Hi I hope everyone is in good health. My wonderful doctor who I have gone to for over 30 years, has just had a stroke and will no longer be able to continue 2 treat patiends. I now have to find another doctor in my area of Southern California. Long Beach, Torrance or Orange County. Any suggestions on doctors who treat Rheumatoid arthritis patients in these areas. Thank you.
I was diagnosed with RA several weeks ago. I did my course of prednisone and have been taking Plaquenil for several weeks. Is it normal to still be feeling joint pain in old parts and getting new pains too? When people tell me their friends with RA live "normal lives". does that mean they still have pain and swelling most days? The doctors at Kaiser are overwhelmed with patients and can't give that idealized "work with your care team" experience.
Getting on the correct treatment can take along time. Unfortunately, it has been a lot of trial an error in my experience. I'm still having a hard time but do have some decent runs with remission. I do best when I am serious about what I eat and get in some form of exercise daily.
Hi Sally-
Your note about Kaiser caught my eye. I am with them as well in the Northern VA area. If you're local, I can reccommend my rheumatologist to you. She changed my life. I spent 4 years going to doctors who couldnt care less that I was sititng in front of them in pain daily. She took the time to ask me my story from the beginning and listened to every word I said. She has put great care into me and my dianoses and has helped me come a long way from where I was 4 years ago when I first met her. That being said, there are still good and bad days. The pain comes and goes but I face it each and every day, taking breaks when I need them, but fighting through a lot of days, doing what I can to live as normally as possible. There is no perfect way to do life with RA and it will be a journey. It takes time, but you will see improvements. :)
Hi Sally B,
I was diagnosed in late 2018 and so it still feels 'new' to me... I heard the same thing from co-workers, friends and acquaintances. After feeling shamed about having major pain, fatigue, swelling joints, daily pain.. I finally decided to just retreat, self-isolate and not breath a word of what 'autoimmune disease' I struggled with in professional settings and with non-intimate friends and acquaintances. My experience with RA is not at all what so many people reported their friends, relatives and acquaintances lived, they said, "Oh my aunt/friend etc just takes medicine and goes hiking and climbing and works 50 hours a week no problem, living a 'normal' life." I thought I was doing something 'wrong' - eating the wrong diet, exercising too much, not enough, not resting enough, etc. Finally, I've realized some key ideas that helped me. I just read in the CreakyJoints blog something that spells out one part of what I realized. The blog talks about when people in your life think you are 'faking it'... the author notes that if people with chronic autoimmune diseases are 'faking' anything, it's 'faking' being well. I now understand that there are so many things at work in the remarks and reception of others to the reality of your (and my) unique experience of the disease: on one hand, people do care and hate to think of us in pain all the time. Friends and family can easily appear to make light of the depth of pain or impact of symptoms on living because they want it to be true that their friends with RA take medication and live 'normal' lives. Saying this allows a psychological buffer between the natural fear of an unpredictable and uncurable disease and their own experience. Another thing active here, is that their 'friends with RA' may just be 'faking being well' - now, I don't mean faking it, but after you live with pain for a long while, sometimes you just want to hide it and 'look like everyone else' so you mask it with cheerfulness and 'I'm fine'. That doesn't always happen, but it can (I do it, unfortunately). Another aspect of these comments is that each manifestation of RA is different, as are people's reactions to medications. The first person with RA who I met after my diagnosis self reported that she lived a 'normal' life and lived on her terms - at the time I didn't realize that she'd completely changed her professional life to accommodate for the disease. She took methotrexate and that was all! Whearas I had been so ill with methotrexate and the other biologics weren't sufficient to help keep my joints from distorting and growing knots. When I met her and heard her light and breezy, "I'm fine and I do everything I want to do, just take methotrexate and I'm fine."... I was so discouraged. Then, finally over months of trying different medications a year of excruciating pain and professional challenges because of it, I accepted that my experience and my body are unique to me. Period. That's it. It's my story and my experience. I don't know if any of that is helpful to you... I hope so.
At the beginning, I found it hard to separate out what RA was 'supposed' to be like and learn to accept how it is TODAY in my body, then accept tomorrow how it is in my body... I haven't been through Kaiser yet... I'm looking for a new Rheumatologist (driving to Portland is too much). :) I wish you well on your journey...
If my name / email address comes up on the zoom link form - my apologies and please fill out with your information!
Lisa
Hi everyone.
This is the link you need to access the meeting on 2/12 at 4 PM Eastern. The link takes you to a form. Once you fill it out, you will get the actual link to join the zoom meeting. You will also get an email with the information. We use this two-step process to avoid trolls.
https://arthritisfoundation.zoom.us/meeting/register/tZcucOGtrDopHtxAWfKVNDknW6BIzihgiTzF
Looking forward to seeing everyone!
Lisa, Michelle, Sadie
HI, I am new to this group. How does this work? Becky H.
Hello im Zoyi im 41, from Queens NY. I got diagnosed on 2004 but they also said i had lupus, i came to NY and met with Bruce Solitar reumatologist and he diagnosed me with RA only. After that i started with methotrexate, i was on that for 3 years and did very bad, i was bald and having a lot of side effects, when they switch me from pill to injection i couldnt take the pain of the injection, that yellow liquid burned me, sting me, it depressed me so bad i told my doctor i wont take it. So they started me with biologics and thats when i started to feel better i started with orencia injections, those injections wasnt that bad. After that it stopped working they put me on Actemra infusion and when Covid hit they didnt want t give me the infusion so they changed me to actemra injection once a week and i got even better. My Dr. Is Abramova now. My hands hurt a lot, my wrist, my knees and im depress taking venlafaxine and bupropion. My doctors changed all the medications that made me gain weight. The only one im in that gain weights is the birth control, i dont like children. I lost 17 pounds because of that and i have hypothyroidism and sleep apnea. Im very happy to be here surrounded with people like me that understand me.
I am sorry to hear of all your struggles. I do hope that you will be feeling better before too long.
Hi Zoraya, I'm glad you found us! Check out the Arthritis Foundation - there is a lot of good information and places to connect on the site.
Lisa
Howdy folks! Happy New year! I recently joined the group in late 2022. I was diagnosed with JRA at age 3 and have grown into an adult living with RA. I have had multiple joints replacement and orthopedic surgeries. I work fulltime alongside 2 of best Rheumatology physicians ever (well in my opinion at least)!
I am looking forward to "meeting" everyone virtually in February!
The hot topics on my list are biosimilars and why is my insurance company making the change? It's so frustrating as a patient as well as a healthcare provider. Also, how do you manage morning stiffness!? My hands seem to be most affected during the winter months. They're sore and puffy first thing in the morning. It takes a good 30 minutes before they're not so sore for me to start using them to get myself ready for work, or drink my coffee.
I hope everyone is making it thru the winter weather! Painfree HUGS!
Hello Lisa! when I had a lot of stiffness and swelling I would take the anti-inflammatory pill before sleeping so that I would wake up less swollen. you probably know about the late-release prednisone pills? I also like cbd lotions..
I was diagnosed when I was 9, I am 38 now and also have had multiple replacements, so it's nice to meet someone like me. I'm trying to connect more with people with RA because I really don't know anyone else..
Hi everyone! Please join us for our first meeting on Sunday, February 12, 2023 at 4 pm ET/3 pm CT/2 pm MT/1 pm PT. We will be getting to know each other and about what to expect from this group. Please bring ideas for topics you would like to discuss as we are starting to plan our guest speakers for the year. We are so excited to start this unique group! Can't wait to virtually see you in February!
Thank,
Michelle, Lisa and Sadie
Facilitators, Rheumatoid Arthritis National Group
Hello, out there! I am newly diagnosed and just found this website. I would love to learn and grow from hearing your experience. I am glad this is an online community because transportation is a real problem for me. I too, would like to know if there are any group zoom meetings. All this is very new to me. I am starting treatment on Cimzia tomorrow. A little nervous. But I'm sure all will be well.
thanks,
Kathy R
I hope your first treatment went well. It is scary. My diagnosis was devastating to me and I cried through my entire first infusion. Fast forward a couple years and I count myself lucky that the treatments work for me. I have to constantly remind myself of where I started so I can be thankful of where I am today.
wishing you luck with your new treatments!
Hi Kathy,
Being newly diagnosed can be scary, but there is lots of good information available. I just posted the first notice for the first meeting on 2/12/23 and I hope you can make it!
Hello
Does the group have regularly scheduled Zoom meetings?
Jan S
Hi Jan,
I just posted a meeting notice on RA page. Meetings will be at least once a quarter
Lisa
My RA treatment makes me more vulnerable during the pandemic and I have been more isolated than I am used to. I am looking for other people who are facing the same situation.
Paulie,
I just posted a notice for our first meeting which will be held on 2/12 @ 4PM ET
Hi Paulie,
I tried to respond before, but my response didn't seem to go through. I know the isolation can be tough and I look forward getting to meet you soon!
Lisa
I am dealing with Arthritis and I have so much pain and inflammation. Are there any kind of medical suggestions for this. I have been to thr Arthritis Clinic several times and they only want to give you antidepressants. I don't want to sleep, I want to stay active and alert. Any suggestions??
Hi Sulayman,
Just be carefu wit tumeric as it is a blood thinner. I just learned that
Lisa
Thank you for posting on our group’s wall. If you have not yet done so, talk to your rheumatologist and share your goals and objectives this will aid your provider in formulating your treatment plan. Most patients living with rheumatoid arthritis take a combination of medications and integrate healthy life styles (physical activity, limiting inflammatory foods, drinking sufficient water, getting adequate sleep, etc.) to help ease inflammation and pain. If you’re not satisfied with your current provider, you may want to seek out a new provider. Our Helpline can help guide you to resources 800.283.7800. Also, while tumeric can help some people, it is also a blood thinner, so you need to be careful.
Lisa Reinstein. Facilitator
[email protected]
703-473-3966
Turmeric can help some for pain. Doesn't solve everything. I use it often. I agree they always willing to put us on something that causes up to be a zombie lol