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.

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catartist | @catartist | Apr 18 1:19pm
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?

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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 | Apr 18 5:50pm

@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 😊

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1 reply
Naseer | @amarnaseer | Apr 18 7:37pm

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.

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Naseer | @amarnaseer | Apr 18 7:43pm
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!

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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
Amy19 | @amy19 | Apr 23 11:44am
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’m not sure. Do you know the names of the tests?

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1 reply
Naseer | @amarnaseer | Apr 23 12:55pm

Today I had my first dose of Rituximab [heavier immunosuppressive than methotrexate and azathioprine].
Also on 20 mg dose of prednisolone.
Hoping for respite against inflammatory myositis and RA.
Will share further experience.

REPLY
pm56 | @pm56 | Apr 23 2:24pm
In reply to @amy19 "I’m not sure. Do you know the names of the tests?" + (show)
@amy19

I’m not sure. Do you know the names of the tests?

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@amy19 - from memory there’s Creatine Kinase (CK), Aldolase, the usual inflammatory markers (ESR, CRP), ANA, and then the myositis-specific autoantibody testing. The Myositis Association has a list of them:
https://www.myositis.org/about-myositis/diagnosis/blood-tests/myositis-autoantibodies/

REPLY
catartist | @catartist | Apr 24 8:15am
In reply to @pm56 "@catartist That’s sort of where I’m at as well - PT every week, Walker in and..." + (show)
@pm56

@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 😊

Jump to this post

Yes - hanging in there and being grateful for good support and daily activities. Hard- but what choice? Being ‘in the dumps’ all the time just keeps us from feeling the joy. Best to you!

REPLY
Amy19 | @amy19 | Apr 30 2:18pm
In reply to @amarnaseer "I have used hydrocloroquine initially as diseases modifying agent for RA, then methotrexate as immunosuppressant at..." + (show)
@amarnaseer

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.

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Have you tried Lyrica to help manage your symptoms? This works for me. I may have me mentioned this before! I’m still getting used to following these threads. I hope you feel better soon!

REPLY
Naseer | @amarnaseer | Apr 30 2:30pm

Have started, a week ago, a combination of Rituximab and Prednisolone for Rhuematoid Arthiritis and Inflammatory myositis.
Hoping to see remission in few weeks .
Shall keep yoi all posted.

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