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Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

Posted by Naseer @amarnaseer, 4 days ago

Male. 63 years old; residing in Karachi. Rheumatoid conditions. Had flair of Rheumatoid Arthritis between 2016 and 2021 which has since subsided / remission; followed by myositis / myopathy (muscle atrophy) since 2022. Difficulty walking, climbing stairs, carrying weight. Currently on low dose Azathioprine and low dose Prednisone. Need advice / diagnosis, followed by treatment on neuro-muscular treatment/management.

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pm56 | @pm56 | 2 days ago
In reply to @amy19 "Hi! I’m Amy, 61. I am in a similar situation, now being assessed for Mixed Connective..." + (show)
@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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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 🙂

REPLY
pm56 | @pm56 | 2 days ago
In reply to @amarnaseer "EMG is slightly painful, bit irritating. But well tolerable." + (show)
@amarnaseer

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

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Ok thank you. I just want to get it over with and figure out what else is going on!

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mommarsh | @mommarsh | 1 day ago
In reply to @amarnaseer "Please let me know if some one is using Rituximab and Prednisine for Rhuematoid Arthiritis and..." + (show)
@amarnaseer

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

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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.

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1 reply
Naseer | @amarnaseer | 1 day ago
In reply to @mommarsh "I have had infusion and am now feeling the benefits from it. Weaning off of prednisone..." + (show)
@mommarsh

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.

Jump to this post

Thank you. Your comments are encouraging. I am in the process of starting Rituximab, shortly.
REGARDS and best wishes for your full recovery.

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