Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

Hello Naseer @amarnaseer, Welcome to Connect. Another member, @slkanowitz, has mentioned similar symptoms and may have some thoughts or suggestions for you on muscle atrophy along with Rheumatoid Arthritis. While you wait for others to respond, I thought you might find these references helpful if you haven't already seen them:

"Treatments. While there are no known cures for muscle wasting, you can do a lot to halt deterioration and build back muscle. Resistance exercise can prevent lean muscle loss, increase range of motion, and reduce the pain of RA."
-- Rheumatoid Cachexia: Symptoms, Causes, and Treatment: https://www.healthline.com/health/rheumatoid-cachexia
-- Rheumatologists Discuss Management of Muscle Loss in Rheumatoid Arthritis: https://www.rheumatologyadvisor.com/features/rheumatologists-discuss-management-of-muscle-loss-in-rheumatoid-arthritis/

I have RA/AxSpA and severe muscle weakness off steroids which led to atrophy recently. In addition to Medrol, Methotrexate and IV Cosentyx (for the RA/AxSpa), my doctor recommended swimming before this last flare, and I found it helped tremendously with joint pain and helped to build strength. I was often tired afterwards, but I had no severe muscle pain, and I built up the time in 5 minute increments slowly over 6 months. I also go to physical therapy twice a week. I am not currently able to swim as my arm and leg muscles are weak. but I am continuing PT pending testing results for an additional neuromuscular condition.

The Myositis Association has a list of medications that are currently being used for Myositis. My infusion nurse mentioned she has a patient with Myositis who has done very well on IVIG (Intravenous Immunoglobin) treatment, which is mentioned in the link:
https://www.myositis.org/about-myositis/treatment-disease-management/medications/
Here's a link to suggested Exercise and Physical Therapy for Myositis patients:
https://www.myositis.org/about-myositis/treatment-disease-management/exercise-physical-therapy/

I understand that biologic drugs like Rituximab were not advised or discussed for muscle atrophy in your case.

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

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!

I have used hydrocloroquine initially as diseases modifying agent for RA, then methotrexate as immunosuppressant at age 59, when I was in remission for RA. By 60 years I experienced myositis / muscle atrophy probably linked to autoimmune condition. Muscle biopsy and EMG nerve testing revealed chronic inflammatory conditions.
Later I was tested for genetics that is whole genome sequencing, which revealed presence of genome for Bethlehem Myopathy, but the doctors are not sure if Bethlehem Myopathy is active due to non-conforming symptoms.
For chronic inflammatory myositis the Rhuematologist and Neurologist
are considering combination of Prednisolone and Rituximab to start with.
Planning to start this treatment in two weeks and see if remission happens. Will share progress as the treatment starts.
Wishing you well.

I have an EMG coming up - was it painful?

Thank you for these! I too have RA and muscle wasting from that , steroids ( can’t get off) and late onset muscular dystrophy. Getting very weak - walking now harder weekly! Do PT twice weekly and peddle at home - walk 1/3 mile when weather allows - takes 1/2 hr plus but helps ! No cure only unknown … but I hide it pretty well! Lol

I did discover my late onset muscular dystrophy ( I am a young 78!) after a glute biopsy - single mutated dominate gene-very rare and of course no cure. Probably been masked by RA pain and atrophy for years - but muscles / tendons started popping and weakness increased - now walking is a big challenge. Just gave up driving which as an active artist is a life changer - tho my dear husband promises lots of support! . Most interesting. Still doing more DNA through UConn -Researching for more info for my 3 grown kids and 8 grands!
I too have iGgIV monthly and it’s made me feel much better - less likely for OTHER things getting me! Best to us - survivors!!!

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