Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello - I have been on Cimzia injections and injectable Methotrexate for a handful of years. This combo did stop the joint damage for me and has been working well. I have had 1 flare that required a steroid taper since being on this combo for RA and UC. It gave me my life back (was life changing). Cimzia is similar to Humira. I could not afford this without the help of the co-pay program the pharmaceutical company offers and insurance from my employer. That is not to say I still don't have side affects of the disease but my pain is much better controlled. I hope this information is helpful to someone. I'm happy to share my story and what has worked for me.

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@kimdett

Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid arthritis. I have had 3 flare ups and these include painful and swollen hands and wrists and feet. Also have pleurisy. Started taking plaquenil at the beginning of November. Hasn’t helped yet. Also prescribed prednisone to help with flare ups. The difference between RA and what I have is I go back to completely normal between flare ups. But it can turn into RA eventually. Anyone else out there have palindromic rheumatism?

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My daughter is 59 and has had this since she was in her 20's. It was so rare then no Doctors knew what she had (we went to 13 specialists).. She one day tried Aleve 7 tablets of the over the counter pills. We were thrilled that this worked within an hour of her episodes. She has asked over the years several Doctors and they agree if she only now has to do this once a month sometimes 2 months and it works she should continue this. There is still no cure that I see when checking Mayo Clinic and John Hopkins web sites.

I am so sorry you have this andd hope this helps you

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I was diagnosed with seronegative RA a year ago this past June. Currently I receive Actemra infusions once a month and have been doing well. At 74 yrs old then, I have to say the diagnosis came as a bit of a shock!

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@tfab12133121

My daughter is 59 and has had this since she was in her 20's. It was so rare then no Doctors knew what she had (we went to 13 specialists).. She one day tried Aleve 7 tablets of the over the counter pills. We were thrilled that this worked within an hour of her episodes. She has asked over the years several Doctors and they agree if she only now has to do this once a month sometimes 2 months and it works she should continue this. There is still no cure that I see when checking Mayo Clinic and John Hopkins web sites.

I am so sorry you have this andd hope this helps you

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@tfab12133121 Gee, I’m a bit confused here! Did your daughter take 7 tablets of Aleve or is drug called Aleve 7? Whichever, I’m so glad that it worked and the doctors were in agreement!

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@darby413

I was diagnosed with seronegative RA a year ago this past June. Currently I receive Actemra infusions once a month and have been doing well. At 74 yrs old then, I have to say the diagnosis came as a bit of a shock!

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@darby413 Yes, the diagnosis can come as a shock. My autoimmune disease came on my 70th birthday. Same for both of my sisters! I just feel that I’m too old for all this. But, on the other hand, I think all of us ‘oldsters’ are adult enough to deal with all the challenges. That said, I do cry a lot, and then get back up and get to work taking care of myself!
How are you coping with your RA? Any special tips?

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@becsbuddy

@darby413 Yes, the diagnosis can come as a shock. My autoimmune disease came on my 70th birthday. Same for both of my sisters! I just feel that I’m too old for all this. But, on the other hand, I think all of us ‘oldsters’ are adult enough to deal with all the challenges. That said, I do cry a lot, and then get back up and get to work taking care of myself!
How are you coping with your RA? Any special tips?

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@becsbuddy Hello Becky. You mention an auto-immune disease that began at age 70. Is it possible to identify what it is? It seems that you have something but it is permanent. Otherwise, some treatment would have stopped it. The whole category of "auto-immune" seems to be very mysterious and intractable. Even cancer, which can be fatal, has treatments that create remission (temporary cessation) or even cure. Any info? Thanks for your ideas.

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I was diagnosed with RA and secondary Sjogren's in June 2023. I have been ill since October 2010 when I had an eye problem which was finally diagnosed in 2022 as an optic nerve bleed (I am told this has never been seen by top doctors in Boston???). I have had multiple tests, blood, scans, spinal taps, EMGs, you name it. After many years of being told I was crazy, I finally had a skin biopsy and have Small Fiber Polyneuropathy with Autonomic Disfunction (heart issues - Tachycardia, lung issues - frequent infections, IBS with severe constipation, neurogenic bladder - incontinence and retention) Every organ is being affected at this point. I am now suspected to have CVID - common variable immune deficiency. Things just keep coming. I am 53 and trying to work full-time, finish my Ph.D, and raise a family. A very long story - back to RA - I was taking Leflunomide which I was told was the best for me but it adversely affected my liver, and was recently switched to Hydroxychloroquine. I have been in chronic pain and illness for over 12 years with little help from multiple doctors and specialists. Any and all information about what others have experienced is welcome!

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@becsbuddy

@darby413 Yes, the diagnosis can come as a shock. My autoimmune disease came on my 70th birthday. Same for both of my sisters! I just feel that I’m too old for all this. But, on the other hand, I think all of us ‘oldsters’ are adult enough to deal with all the challenges. That said, I do cry a lot, and then get back up and get to work taking care of myself!
How are you coping with your RA? Any special tips?

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Coping with my RA was really hard. I had a hard time realizing that I wouldn't always be up and ready to go. It has taken time to accept this. With my infusion was working, I was a happier person without terrible pain. I also had to learn that it takes about an hour in the mornings to get moving. I am usually stiff.
My biggest tip is listen to your body...I do have fatigue problems with my RA. If I am having a really super day, I think I am super woman and go full speed. I have found this is not good as I always pay the next day with really bad fatigue. Learning to pace myself is what it is all about for me.

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@jshdma

@becsbuddy Hello Becky. You mention an auto-immune disease that began at age 70. Is it possible to identify what it is? It seems that you have something but it is permanent. Otherwise, some treatment would have stopped it. The whole category of "auto-immune" seems to be very mysterious and intractable. Even cancer, which can be fatal, has treatments that create remission (temporary cessation) or even cure. Any info? Thanks for your ideas.

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@jshdma I was diagnosed with chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids-CLIPPERS. I have lymphocytic inflammation on my brain. It was diagnosed at University of Colorado Health in Denver about 5-6 yrs ago. I have a neuro-immunologist who follows me. It’s been a long road, but I’m slowly getting better. One thing about autoimmune diseases, they are never cured, only managed. What a bummer! Very few cases worldwide.
Thanks for asking

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Hi - I was diagnosed with RA in May. I have considerable blood work done with no RA markers during Covid and the marker showed up after the booster shot. Apparently it’s a consequence from the shot. My doctor and pharmacist both reported it to the CDC.

I’m angry that being compliant has given me a life long, drug filled future

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