Welcome to the

Rheumatoid Arthritis Connect Group

Rheumatoid Arthritis
734 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

  • Saturday, April 6th, 2024
    12:00 PM ET
    2h
  • Virtual Event
  •   72 people attending
Rheumatoid Arthritis Connect Group - Navigating Relationships with RA – Family/Friends/Coworkers edition

Join us on Saturday April 6th at 12 pm ET/ 11 am CT / 10 am MT / 9 am PT for a 2-hour panel discussion on improving communication and relationships with family, parents, friends and coworkers. During the first hour the panel will delve into the complexities of navigating life with rheumatoid arthritis (RA) within various bonds – from parent/child and family dynamics to friendships and professional relationships with coworkers. Our expert panel will comprise of Courtney Wells PhD, MSW, MPH, LGSW, a mental health professional, family of people living with RA and an HR professional. Get practical advice and compassionate perspectives to enhance understanding and strengthen connections while navigating the challenges posed by rheumatoid arthritis.

Please submit questions  via this link by no later than 3/28 to be considered for this session.

Dr. Courtney Wells is a researcher, educator, and licensed social worker who is passionate about improving the emotional and social health of people living with chronic health conditions. She is an Associate Professor at the University of Wisconsin – River Falls, a co-lead for an emerging organization called the Young Patients' Autoimmune and Empowerment Alliance (YP AREA) and has been volunteering for the Arthritis Foundation for over 20 years. Courtney is driven by her 35 years of experience living with both physical and mental health conditions.

After the panel, there will be time to connect with others.

Friends, Family, and Care Partners are always welcome to join events.

We respect privacy and confidentiality and do not record our online Connect Group Events.

Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.

We look forward to seeing you soon!

 This is a Virtual Event. 
  • Tuesday, June 11th, 2024
    8:00 PM ET
    2h
  • Virtual Event
  •   50 people attending
Rheumatoid Arthritis Connect Group – Joint Friendly Movement

We are delighted to welcome Cindy Senk for a “Yoga for Arthritis” experience. Yoga is gentle and therapeutic movements specifically designed to alleviate joint pain and stiffness. Cindy will guide you through a series of accessible yoga poses and mindful breathing techniques, promoting flexibility, strength, and overall well-being for those managing arthritis. Cindy is a fellow warrior and will share the benefits and tailoring a practice to meet your needs even on days when movement is limited. Discover a supportive and inclusive environment tailored to enhance your physical and mental health on your journey to greater mobility. Yoga for Arthritis is an evidence-based program developed at Johns Hopkins that was sponsored by the Arthritis Foundation. Chair and mat options will be offered. You may want to have handy a blanket or covering for relaxation...a belt, yoga strap, or towel might be helpful as well.

Cindy Senk M.ED in Rehabilitation, E-RYT 200, Yoga for Arthritis Instructor, ACCESSIBLE YOGA TEACHER CERTIFIED, ACSM (American College of Sports Medicine) Certified Personal Trainer, and AFAA (Aerobics Fitness Association of America) certified exercise instructor both land and aquatics, Arthritis Foundation Certified Land and Water Instructor, Owner-MOVEMENT FOR ALL, over 40 years experience in the Fitness industry, 20 years teaching Mat and Chair Yoga, Walk with Ease coach, Pilates instructor, Active Older Adults exercise specialist. She has also presented Fitness workshops and programs nationally for AFAA (Aerobics Fitness Association of America), USWFA (United States Water Fitness Association), the Arthritis Foundation, Leading Age, and ICAA (International Council of Active Aging). Cindy is is on faculty at the World Instructor Training School and teach personal training certification courses, and an Adjunct Professor at Manchester Community College in the Health & Exercise Science Program. She is part of the Medical Fitness Network and specialize in chronic illness and injury program design and intervention. Cindy has volunteered with the Arthritis Foundation for over 20 years. She is a patient with osteoarthritis and Sjogren's.

After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.

We respect privacy and confidentiality and do not record our online meetings.

Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.

We look forward to seeing you soon!

 

 This is a Virtual Event. 
  • Event List
Arthritis Foundation Event
  • Saturday, April 6th, 2024
    12:00 PM ET
    2h
  • Virtual Event
  •   72 people attending
Rheumatoid Arthritis Connect Group - Navigating Relationships with RA – Family/Friends/Coworkers edition

Join us on Saturday April 6th at 12 pm ET/ 11 am CT / 10 am MT / 9 am PT for a 2-hour panel discussion on improving communication and relationships with family, parents, friends and coworkers. During the first hour the panel will delve into the complexities of navigating life with rheumatoid arthritis (RA) within various bonds – from parent/child and family dynamics to friendships and professional relationships with coworkers. Our expert panel will comprise of Courtney Wells PhD, MSW, MPH, LGSW, a mental health professional, family of people living with RA and an HR professional. Get practical advice and compassionate perspectives to enhance understanding and strengthen connections while navigating the challenges posed by rheumatoid arthritis.

Please submit questions  via this link by no later than 3/28 to be considered for this session.

Dr. Courtney Wells is a researcher, educator, and licensed social worker who is passionate about improving the emotional and social health of people living with chronic health conditions. She is an Associate Professor at the University of Wisconsin – River Falls, a co-lead for an emerging organization called the Young Patients' Autoimmune and Empowerment Alliance (YP AREA) and has been volunteering for the Arthritis Foundation for over 20 years. Courtney is driven by her 35 years of experience living with both physical and mental health conditions.

After the panel, there will be time to connect with others.

Friends, Family, and Care Partners are always welcome to join events.

We respect privacy and confidentiality and do not record our online Connect Group Events.

Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.

We look forward to seeing you soon!

 This is a Virtual Event. 
  • Tuesday, June 11th, 2024
    8:00 PM ET
    2h
  • Virtual Event
  •   50 people attending
Rheumatoid Arthritis Connect Group – Joint Friendly Movement

We are delighted to welcome Cindy Senk for a “Yoga for Arthritis” experience. Yoga is gentle and therapeutic movements specifically designed to alleviate joint pain and stiffness. Cindy will guide you through a series of accessible yoga poses and mindful breathing techniques, promoting flexibility, strength, and overall well-being for those managing arthritis. Cindy is a fellow warrior and will share the benefits and tailoring a practice to meet your needs even on days when movement is limited. Discover a supportive and inclusive environment tailored to enhance your physical and mental health on your journey to greater mobility. Yoga for Arthritis is an evidence-based program developed at Johns Hopkins that was sponsored by the Arthritis Foundation. Chair and mat options will be offered. You may want to have handy a blanket or covering for relaxation...a belt, yoga strap, or towel might be helpful as well.

Cindy Senk M.ED in Rehabilitation, E-RYT 200, Yoga for Arthritis Instructor, ACCESSIBLE YOGA TEACHER CERTIFIED, ACSM (American College of Sports Medicine) Certified Personal Trainer, and AFAA (Aerobics Fitness Association of America) certified exercise instructor both land and aquatics, Arthritis Foundation Certified Land and Water Instructor, Owner-MOVEMENT FOR ALL, over 40 years experience in the Fitness industry, 20 years teaching Mat and Chair Yoga, Walk with Ease coach, Pilates instructor, Active Older Adults exercise specialist. She has also presented Fitness workshops and programs nationally for AFAA (Aerobics Fitness Association of America), USWFA (United States Water Fitness Association), the Arthritis Foundation, Leading Age, and ICAA (International Council of Active Aging). Cindy is is on faculty at the World Instructor Training School and teach personal training certification courses, and an Adjunct Professor at Manchester Community College in the Health & Exercise Science Program. She is part of the Medical Fitness Network and specialize in chronic illness and injury program design and intervention. Cindy has volunteered with the Arthritis Foundation for over 20 years. She is a patient with osteoarthritis and Sjogren's.

After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.

We respect privacy and confidentiality and do not record our online meetings.

Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.

We look forward to seeing you soon!

 

 This is a Virtual Event. 
Facilitators [3]
Members [734]

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Connect Group - National - Rheumatoid Arthritis

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Comments [63]
Martin Eric R
Martin Eric R
February 6, 2024 - 7:45 PM

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

 

Hillary R
Hillary R
February 18, 2024 - 12:14 PM

I am. Naproxen is my life saver. But would love any other insight on managing without meds 

Jan W
Jan W
January 30, 2024 - 2:54 AM

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.  

Martin Eric R
Martin Eric R
February 6, 2024 - 7:50 PM

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

Melissa R
Melissa R
January 16, 2024 - 6:46 PM

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

Bonnie B
Bonnie B
January 10, 2024 - 7:55 PM

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. 

Michelle L
Michelle L
January 10, 2024 - 6:47 PM

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 

Karen H
Karen H
January 4, 2024 - 10:59 PM

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.

Kim A
Kim A
February 14, 2024 - 1:15 AM

Barbara C
Barbara C
December 27, 2023 - 9:35 PM

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. 

Jan W
Jan W
January 30, 2024 - 2:57 AM

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.  

Juliet  L
Juliet L
December 31, 2023 - 8:19 PM

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!🙋‍♀️

Sheri H
Sheri H
December 12, 2023 - 2:12 AM

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? 

Jason G
Jason G
December 4, 2023 - 6:26 PM

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.  

Juliet  L
Juliet L
December 31, 2023 - 8:29 PM

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!

Deena M
Deena M
November 18, 2023 - 2:42 AM

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

Juliet  L
Juliet L
December 31, 2023 - 8:52 PM

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.

Juliet  L
Juliet L
December 31, 2023 - 8:49 PM

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!

Jason G
Jason G
December 4, 2023 - 6:24 PM

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. 

Deena M
Deena M
November 18, 2023 - 2:42 AM

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

Deena M
Deena M
November 18, 2023 - 2:42 AM

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

Trish B
Trish B
November 12, 2023 - 8:35 PM

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.  

Autumn J
Autumn J
November 3, 2023 - 11:38 AM

Hi, new here. I have had arthritis for over 10 years.

Lisa R
Lisa R
November 1, 2023 - 11:04 PM

Here is the link for tonight's meeting

https://arthritisfoundation.zoom.us/meeting/register/tZwtdu-srD4tE9W8tEVEmslw_g22-eqaPrZu

 

Trish B
Trish B
November 12, 2023 - 8:37 PM

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!

Ciaran O
Ciaran O
November 4, 2023 - 11:12 PM

Will there be more meetings? Thank you

pat w
pat w
October 12, 2023 - 12:54 PM

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

Suzanne M
Suzanne M
October 9, 2023 - 4:40 AM

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.

Jen F
Jen F
September 16, 2023 - 9:04 PM

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.

Jen F
Jen F
September 16, 2023 - 9:00 PM

Are there online , peer lead support groups?

Elizabeth  Z
Elizabeth Z
September 3, 2023 - 11:21 PM

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 =) 

Trish B
Trish B
November 12, 2023 - 8:42 PM

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. 

Joanna G
Joanna G
August 31, 2023 - 9:35 PM

Hi all, any suggestions for pain management outside of medication? 

Trish B
Trish B
November 12, 2023 - 8:45 PM

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. 

Autumn J
Autumn J
November 3, 2023 - 11:40 AM

I don't even get pain meds. I take tylenol. My doctor says to. But I still hurt.

Dee G
Dee G
August 31, 2023 - 11:05 AM

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?

Trish B
Trish B
November 12, 2023 - 8:48 PM

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!

Michelle W
Michelle W
September 10, 2023 - 6:20 PM

Hi. It took a years treatment and 3 failed medications and finally Kevzara helped mine to a fair degree. 

Leslie L
Leslie L
August 30, 2023 - 7:25 PM

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?

Trish B
Trish B
November 12, 2023 - 8:54 PM

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. 

Tracy S
Tracy S
November 2, 2023 - 6:10 PM

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

Melyssa E
Melyssa E
September 26, 2023 - 3:58 PM

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.

Elizabeth  Z
Elizabeth Z
September 3, 2023 - 11:13 PM

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 . 

Robert R
Robert R
August 16, 2023 - 5:23 PM

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 ? 

pat w
pat w
October 12, 2023 - 1:06 PM

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

Linda R
Linda R
September 1, 2023 - 4:00 PM

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. 

Larry F
Larry F
August 29, 2023 - 7:13 PM

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.

Marcia E
Marcia E
July 24, 2023 - 7:28 PM

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.

 

Joanna H
Joanna H
September 10, 2023 - 4:26 PM

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. 

Frances P
Frances P
August 11, 2023 - 12:18 PM

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 

Gail R
Gail R
July 20, 2023 - 2:26 PM

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

Nina R
Nina R
July 24, 2023 - 3:45 AM

I also take Cimzia and didnt know this could happen. I'll look around for you. Good luck ❤️

Nina

Jennifer B
Jennifer B
July 9, 2023 - 7:00 PM

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.

 

Jeanne B
Jeanne B
July 8, 2023 - 9:14 PM

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

LisaMarea  A
LisaMarea A
July 29, 2023 - 8:47 AM

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!  

Shanna  D
Shanna D
June 27, 2023 - 8:57 PM

Hi. I'm Shanna, I'm new to the group. New to RA, too. Just looking for someone to talk to about all this. 

Shelby P
Shelby P
August 3, 2023 - 6:20 PM

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.

LisaMarea  A
LisaMarea A
July 29, 2023 - 8:51 AM

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.

 

LINDA O
LINDA O
June 25, 2023 - 7:51 PM

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!

Joanna H
Joanna H
September 10, 2023 - 4:28 PM

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. 

LisaMarea  A
LisaMarea A
July 29, 2023 - 8:54 AM

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. 

Sarimah M
Sarimah M
June 25, 2023 - 6:21 PM

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.

Suzanne S
Suzanne S
June 21, 2023 - 1:01 AM

Thanks for including me in this group

Shanna  D
Shanna D
June 27, 2023 - 8:59 PM

I feel the same. It's nice to find a place to talk, maybe, right? I'm Shanna by the way. 

Dorothy A
Dorothy A
June 12, 2023 - 7:45 PM

Is there a zoom get together or support group meeting of any kind?

Donna-Leigh H
Donna-Leigh H
May 31, 2023 - 2:09 PM

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. 

Amanda W
Amanda W
May 28, 2023 - 3:36 PM

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.

Jenifer l
Jenifer l
August 31, 2023 - 5:13 AM

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

a a
a a
June 2, 2023 - 3:00 PM

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. 

Cory R
Cory R
May 20, 2023 - 2:08 AM

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.  

Gregg M
Gregg M
July 17, 2023 - 2:18 PM

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.

Donna-Leigh H
Donna-Leigh H
May 31, 2023 - 2:11 PM

Can you tell me how you were finally diagnosed. I believe I have serum negative but not sure what to ask for. 

a a
a a
May 18, 2023 - 7:14 PM

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 😺

Gail R
Gail R
July 20, 2023 - 2:34 PM

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. 

Sarimah M
Sarimah M
June 25, 2023 - 5:01 PM

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?

Amy M
Amy M
June 2, 2023 - 2:29 PM

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. 

Desra L
Desra L
May 11, 2023 - 12:51 AM

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. 

Karyza J
Karyza J
May 10, 2023 - 8:20 PM

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?

a a
a a
May 22, 2023 - 6:32 PM

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.

Cory R
Cory R
May 20, 2023 - 1:52 AM

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.

Mary Ellen G
Mary Ellen G
May 10, 2023 - 5:41 PM

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.

Lori B
Lori B
June 25, 2023 - 12:35 AM

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.

Lori B
Lori B
June 25, 2023 - 12:35 AM

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.

Cory R
Cory R
May 20, 2023 - 1:53 AM

I hope you find a doctor that will listen. My second rheumatologist listened and performed tests. I was diagnosed with seronegative RA.

Lisa R
Lisa R
May 10, 2023 - 6:46 PM

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

Lori J
Lori J
May 3, 2023 - 7:30 PM

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.

Lori J
Lori J
May 3, 2023 - 7:30 PM

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.

Nicole S
Nicole S
April 26, 2023 - 4:25 AM

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...

Lisa R
Lisa R
May 10, 2023 - 6:53 PM

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

Sarah H
Sarah H
April 26, 2023 - 1:15 AM

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

Mary Ellen G
Mary Ellen G
April 23, 2023 - 12:25 AM

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.

Lori B
Lori B
June 25, 2023 - 12:44 AM

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.

Lisa R
Lisa R
May 10, 2023 - 7:03 PM

Hi Erin,

What great advice.  A team is definitely needed.  Thank you for contributing!

Lisa

RA Conect Goup Co-Facilitator

Lisa R
Lisa R
May 10, 2023 - 6:58 PM

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

Lori J
Lori J
May 3, 2023 - 7:39 PM

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.

Erin R
Erin R
May 2, 2023 - 11:49 PM

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. 

Keneisha M
Keneisha M
April 19, 2023 - 1:50 AM

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.

Sarah H
Sarah H
April 26, 2023 - 1:12 AM

I just joined too....

Kadeesha C
Kadeesha C
April 11, 2023 - 5:52 PM

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?

Erin R
Erin R
May 2, 2023 - 11:51 PM

Please let me know as well! 

Michelle C
Michelle C
April 25, 2023 - 6:09 PM

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.

Kathy  G
Kathy G
April 10, 2023 - 7:29 AM

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.

Cory R
Cory R
May 20, 2023 - 1:58 AM

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.

Fabiola F
Fabiola F
April 2, 2023 - 2:20 AM

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] :)

Lori B
Lori B
June 25, 2023 - 12:45 AM

Naproxen? Really? That's all?

Allyson H
Allyson H
April 4, 2023 - 8:16 PM

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!

Elizabeth B
Elizabeth B
March 15, 2023 - 1:47 PM

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. 

Lori B
Lori B
June 25, 2023 - 12:47 AM

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.

Maggie  S
Maggie S
March 27, 2023 - 6:52 PM

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 

Ana D
Ana D
February 28, 2023 - 10:37 PM

I am on intravenous biologics and have horrible veins. Recommended to have a port put in. Pros and cons? Does anyone else have one?

Marilyn  M
Marilyn M
February 24, 2023 - 7:44 PM

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.

Sally B
Sally B
February 18, 2023 - 2:07 AM

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.  

 

Jenny S
Jenny S
May 21, 2023 - 3:48 PM

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.  

Kathryn B
Kathryn B
March 15, 2023 - 7:00 PM

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. :)

Elaine C
Elaine C
March 14, 2023 - 8:20 PM

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...

Lisa R
Lisa R
February 11, 2023 - 5:39 PM

If my name / email address comes up on the zoom link form - my apologies and please fill out with your information!

 

Lisa

Lisa R
Lisa R
February 11, 2023 - 5:28 PM

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

 

 

Becky H
Becky H
February 7, 2023 - 5:57 PM

HI, I am new to this group. How does this work? Becky H.

Zoraya G
Zoraya G
January 24, 2023 - 12:03 AM

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.

Becky H
Becky H
February 7, 2023 - 6:00 PM

I am sorry to hear of all your struggles. I do hope that you will be feeling better before too long.

Lisa R
Lisa R
January 26, 2023 - 1:20 AM

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

Lisa W
Lisa W
January 11, 2023 - 8:46 PM

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! 

Estefania A
Estefania A
February 7, 2023 - 2:20 AM

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.. 

 

 

Michelle C
Michelle C
January 10, 2023 - 7:16 PM

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

Katherine  R
Katherine R
January 10, 2023 - 2:15 AM

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

Becky H
Becky H
February 7, 2023 - 6:04 PM

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.

Estefania A
Estefania A
February 7, 2023 - 2:21 AM

wishing you luck with your new treatments! 

Lisa R
Lisa R
January 10, 2023 - 5:23 PM

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!

Jan S
Jan S
January 6, 2023 - 4:22 AM

Hello

Does the group have regularly scheduled Zoom meetings?

Jan S

 

 

Lisa R
Lisa R
January 10, 2023 - 5:24 PM

Hi Jan,

I just posted a meeting notice on RA page.  Meetings will be at least once a quarter

Lisa

 

Paulie R
Paulie R
December 20, 2022 - 11:17 PM

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.

Lisa R
Lisa R
January 10, 2023 - 5:25 PM

Paulie,

I just posted a notice for our first meeting which will be held on 2/12 @ 4PM ET

Lisa R
Lisa R
December 22, 2022 - 10:26 PM

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

Fannie P
Fannie P
December 18, 2022 - 2:45 PM

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??

Lisa R
Lisa R
December 22, 2022 - 10:28 PM

Hi Sulayman,

Just be carefu wit tumeric as it is a blood thinner.  I just learned that

 

Lisa

Lisa R
Lisa R
December 22, 2022 - 2:47 PM

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

Sulayman M
Sulayman M
December 19, 2022 - 3:00 AM

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