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Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

Autoimmune Diseases | Last Active: 20 hours ago | Replies (14)
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@amy19

Hi! I’m Amy, 61. I am in a similar situation, now being assessed for Mixed Connective Tissue Disease (MCTD) and chronic inflammatory demyelinating polyneuropathy (CIPD). Current dx NSIP, ILD, RA, Raynaud’s, Sjogrens, Fibromyalgia, Pseudogout, Spinal Stenosis.🤦🏼‍♀️

I was taking Xeljanz last year for 6 months for RA. It worked right away and I almost felt ‘normal’. Then I got a mild case of cellulitis, followed by a staph infection, and a ruptured hand tendon that wouldn’t heal.

I want to go back on Xeljanz at a half dose, but they keep talking about Orencia. I read about Rituximab, it sounds interesting. 🤔

Oh, about prednisone, I prefer Medrol because of GI upset. It works like a miracle, but it’s a love-hate relationship. After two years at 40 mg for NSIP and ILD, I needed bilateral hip replacements. I gained 40 pounds too! Then tapered, flared, rinse and repeat.

Anyway, I would love to hear more about your situation, and possible solutions. I hope you feel better soon!🙋‍♀️

PS Anyone with advice on these subjects, please reach out. I’d love to hear from you!

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Replies to "Hi! I’m Amy, 61. I am in a similar situation, now being assessed for Mixed Connective..."
pm56 | @pm56 | 2 days ago

I gained 60 lbs over the last 6 years on Medrol. I think the moon face is what bothers me the most, but I have managed to lose about 35 lbs (and one whole chin!) in the last 9 months by eating more of a Whole Food Plant Based diet. It’s slow going, but I guess better slow than not at all, lol.

It’s a good idea to stay current with your eye check-ups as daily Medrol can affect your eye pressure. My cornea specialist sees me every 3 months to check the eye pressure and was monitoring the cataracts that developed from the steroids. I finally caved last year and had them replaced once I wasn’t legal to drive anymore (I’m 55). It is an incredible drug, but the side effects can be terrible. I also take Boniva, an osteoporosis preventative, and despite being in menopause, I actually gained a little bone density even on the steroid, which was encouraging.

Your “ tapered, flared, rinse and repeat” resonated deeply with me and has been an ongoing cycle for the last 6 years while I try to find “the one.” I’m in the process of being tested for Myasthenia Gravis which might explain why I have muscle weakness and shuffle when I’m off the Medrol.

Neither Orencia nor Rituximab worked for me when I tapered from the Medrol, but on the plus side I had no bad side effects from either, so I really hope one of them works for you 🙂

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