Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

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!

EMG is slightly painful, bit irritating. But well tolerable.

Please let me know if some one is using Rituximab and Prednisine for Rhuematoid Arthiritis and inflammatory Myositis; and the experience thereof.

I have had infusion and am now feeling the benefits from it. Weaning off of prednisone now.
The drug that affected me the most in a bad way was Cellcept, caused breathing difficulties and weakness, had to be on oxygen because of it. Doc took me off it.

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 🙂

I have an EMG coming up - was it painful?

Hi @pm56! Thanks for your reply, we have a lot in common. Congratulations on your weight loss! I have gained and lost 40 pounds twice over the last 20 years, and the steroid belly is the worst!! And every time I try a new medication I gain 10 or 12 pounds and have to lose it all over again, sigh. I take the same approach as you -- better food, keep walking, safe exercise.

Eye pressure is scary, right? I had my cataracts removed in 2020, and they had to laser them again two years later. Funny story ... I live in Santa Barbara, California near some large mountains, and the year I had terrible cataracts there was a huge fire roaring down the mountain heading straight for us. I live with my adult daughter and she panicked, but I looked out the window and said, "Oh, it's not that bad!", lol. The smoke was so bad that we left for a couple of days so that my lung disease wouldn't get worse. I was using an oxygen concentrator and when the power went out we had to leave.

Menopause (I'm 61) makes everything so difficult. Thanks for the info on Boniva. I need something better than Fosamax and I'm so nervous about the side effects. Forteo is probably in my near future. Finding joy in the simplest things has kept me going.

Let me know how your test comes out. I am still trying to get an answer about these overlapping symptoms including muscle weakness and fatigue. Opening a heavy door and lugging the laundry around is so much harder than it used to be. Have you considered a JAK inhibitor?

I've gotten run. I look forward to hearing from you. Take Care!

It is a bit uncomfortable but not too bad. Also once the test is over, I did not feel anymore worse for wear. Best wishes.

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!