Rheumatoid Arthritis Connect Group

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

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 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.

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

Nina

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, 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.

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. 

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

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. 

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. 

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. 

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.

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

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

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. 

I just joined too....

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.

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.

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 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 

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...

Hi Becky,

Welcome to the group.  At least once a quarter we will have virtual meetings where we can talk, present information, have Subject Matter Experts present information.  Hopefully you were able to RSVP for our first meeting on Sunday 2/12 (I forgot it was Superbowl Sunday when I suggested the date).  It's important to RSVP as the zoom link registration will be sent to those who RSVP.  We will also post it on this discussion board. The link will take you to another page where you will fill out a Zoom registration form;  you get the actual Zoom meeting link once you submit that form

If you want to connect with others between meetings,  visit the Online Community at https://liveyes.arthritis.org and find the  Rheumatoid Arthritis Discussion

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

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.. 

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!

Hi Jan,

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

Lisa

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

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