Rheumatoid Arthritis (RA) - Introduce yourself and meet others

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Hi- Chris here ( from CT). RA is a real treat isn’t it! I was an active soul for my 40 yrs of it so far - till the disease and the long term prednisone caused muscle atrophy more recently - possibly last couple of years but didn’t know it till last Dec when all but my Maximus glutes ‘popped’! Shoulders lost muscle too - hard to walk etc. anyone else have this response and have any tips? Am doing PT and keep moving - in spite of pain and weakness - eating protein more etc. Lost a lot of weight too (97 lately). Scary but I trudge on!

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So I was clumsily trying to make the point that from a diagnosis or treatment perspective, whether or not you are sero-positive matters not. Yes if you are positive for RA Factor that makes at least that part of the diagnosis easy. But being sero negative doesnt mean you dont have RA. And the whole disease profile is rarely straightforward.

I have either inflammatory Sjogrens arthritis or RA
lots of joint pain, damage
I wish we had better treatments

Thanks for your help. I am all set up on the updates.

My RA journey began in 1995. I have had fairly good success with treatments but have dealt with chronic pain and physical changes for nearly 30 years. I started treatment with Prednisone and Vioxx. I feel fortunate that I was newly diagnosed when Enbrel (one of the first biologica) was approved for RA treatment. Vioxx was great but it was discontinued and I have been taking Celebrex since then. Enbrel worked initially but became ineffective quickly. I was then prescribed Remicade (my wonder drug) and Methotrexate which I took for 7 years successfully. I only stopped to try to get pregnant. I was unable to conceive after 2 1/2 years of trying with fertility treatments so went back to Remicade but unfortunately it wasn’t as effective. I then tried Rituxan and was pretty well controlled with this medication and methotrexate for 15 years. In 2023 I was infected with Covid two weeks after my dosing and developed Covid pneumonia and had severe illness that required hospitalization and 24/7 oxygen therapy for months. I was treated with high doses of steroid which helped control my RA but not the pneumonia. A pulmonologist prescribed Cellcept which helped control the RA and treated the pneumonia. I now have interstitial lung disease. I have low IgG level possibly caused by Rituxan and maybe why my Covid was so severe . I opted not to go back on Rituxan because of this and the fact that the drug’s effect lasts for six months. I opted for a medication with shorter effects so I can stop it if I become ill in the future. I will be starting Simponi very soon. If anyone has experience with this medication I’d like to hear about it.

@ksnak Welcome to Mayo Clinic Connect! I tried a search of the discussions, looking for simponi, but this is the only one I found.
https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-as-four-years-ago-have-suffered-pain-since-20s/
You can try looking for more by entering ‘simponi’ at the top of the page. But I’m sure that other members will see your question and answer you.
It’s too bad that you had to change drugs since rituxan was working so well. Let’s hope that simponi will do a great job for you!

What an ordeal!! I was diagnosed in 2012 and after Humira and then Enbrel and finally Remicade, I am very well controlled with only occasional flares. I do have repetitive issues with tethered tendons in both hands and migratory joint pain. But compared to many, I am very well controlled by Remicade.
My doc and I recently discussed trying a less dangerous drug. But I am familiar with what you describe - that if you stop an RA drug and then resume, it is very likely not to work as well. So I am making no changes.
I am not familiar personally with Simponi, but an acquaintance tried it and had to stop because it jacked up her blood pressure.

Hang in there and good luck!!!

Hello Naomi, I have just joined the group and have been reading and reading for alternative measures (like your question) but haven't had much luck so far. Most entries are pharmaceutical drug related. Let me know if you got any good replies please!! I have only seen some for CBD+THC and baking soda and water. When I was first diagnosed (2013) I changed my entire life (diet especially) and did specific strength training.....no processed food, no sugar, no gluten, no nightshade vegetables etc. I kept a food diary and flare diary to help me understand the disease characteristics. It helped with everything...... But, unfortunately, the disease has taken a turn this year??!! So, I am researching again 🙂 T