1. < Autoimmune Diseases

Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

Posted by Naseer @amarnaseer, Apr 11 11:49pm

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

catartist | @catartist | 4 days ago
In reply to @pm56 "YES! Pre-eye surgery everything was so blurry, so I never knew if I was wearing a..." + (show)
@pm56

YES! Pre-eye surgery everything was so blurry, so I never knew if I was wearing a shirt with a stain on it or not! Your wild-fire tale is both terrifying and hysterical, lol.

I am truly sick and tired of overlap syndrome where none of my labs and markers match my symptoms and vice versa. Something showing up on the neuromuscular testing would almost be a relief as that would finally mean a diagnosis with treatment.

I did try a JAK inhibitor (Rinvoq) but had a DVT within days, so I was taken off and my doctor never put me back on another one. Have you had any myopathy panels done for the weakness?

Jump to this post

I did do aggressive DNA and other neuromuscular testing ( still on going results) for atrophy - serious. But there are no treatments - in my case anyway. The RA, steroid dependence and now MD are all muscle wasting - PT twice a week ( and at home) and walker walking outside ( very slow) is about it to try and keep what muscles, ligaments etc are left. Downhill slide - frightening . Diagnosis does not always lead to ‘cure’ or even much management. But good to have knowledge - I can accept it better if I understand. Hope you can stay positive too!

REPLY
pm56 | @pm56 | 4 days ago

@catartist That’s sort of where I’m at as well - PT every week, Walker in and outside the house, and most annoyingly, muscle pain and weakness when I overdo it. My symptoms are manageable on steroids, but I deteriorate very quickly off them. My rheumatologist floated Myasthenia Gravis as a possibility and sent to me to a neurologist, so I’m in the middle of all the testing now. If it is that, there are other treatment options that open up. We’re all dealing with slightly different issues, but the one thing that connects us is that we’re all hanging in there 😊

REPLY
Naseer | @amarnaseer | 4 days ago

Any experience of combination of steriod Prednisone with bioligic drug Rutuximab for remission of Rhuematoid and Muscular issues ?
I am about to use the combination.

REPLY
Naseer | @amarnaseer | 4 days ago
In reply to @catartist "78 now RA and step. For 39 years - low dose prednisone every day / now..." + (show)
@catartist

78 now RA and step. For 39 years - low dose prednisone every day / now can not get off it so it too isn’t helping atrophy. And recently diagnosed with late onset muscular dystrophy ( one dominate gene mutation!). I’ve been on Orencia for years and it seems to have slowed RA I guess. Less so more recently. No bad sides. Also last year on IV immunoglobulins ( IGg and A ) monthly which helps me so much overall. So hard to know what is doing what isn’t it. ? Best with all!

Jump to this post

Looks like, you have fought the battle for a long time, and manged well.
Please keep sharing your experience and thoughts on various management techniques used by you from time to time.
Cheers!

REPLY
View MoreView Less
Please sign in or register to post a reply.