1. < Autoimmune Diseases

Inclusion Body Myositis: I'd like to talk with others

Posted by Triker7 @triker7, Nov 8, 2011

This is a form of muscular dystrophy that has no known cure.....I would enjoy someone to share the conversation about...there are several gene therapy trials going on at a slower than necessary rate.....thanks...Ted

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charlie01 | @charlie01 | Feb 23, 2022
In reply to @becsbuddy "Good morning @charlie01 I’m so sorry you were diagnosed with myositis. Autoimmune disease can be so..." + (show)
@becsbuddy

Good morning @charlie01 I’m so sorry you were diagnosed with myositis. Autoimmune disease can be so difficult to deal with. Has your doctor recommended physical therapy to help with the muscle weakness? Or, are you a walker? Physical activity is so important if you have an AD. And 1 or 2 naps a day can really help! I included these two sites that can give you more information:
https://my.clevelandclinic.org/health/diseases/15700-inclusion-body-myositis
https://rarediseases.info.nih.gov/diseases/3896/inclusion-body-myositis
You said that you’re on prednisone and Mycophenolate. So am I. I started on heavy doses of prednisone for my AD. The prednisone finally brought my disease under control, but it caused major problems—osteoporosis and cataracts. I’m tapering off the prednisone and the Mycophenolate should take over and keep things under control without the side effects of prednisone.
You might also want to check out The Myositis Assoc. https://www.myositis.org.
How are you coping with this diagnosis so far?

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Thank you Becky. Not sure my rheumatologist is familiar with IBM. Just seeking more information.

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charlie01 | @charlie01 | Feb 23, 2022
In reply to @awhall75 "My husband has Inclusion Body Myositis. He was misdiagnosed in 2006 with Poly myositis. He only..." + (show)
@awhall75

My husband has Inclusion Body Myositis. He was misdiagnosed in 2006 with Poly myositis. He only found out last year, with another biopsy, that he had IBM.

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Not sure my rheumatologist is familiar with IBM. Just seeking more information.

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charlie01 | @charlie01 | Feb 23, 2022
In reply to @mklam "My Husband has just been diagnosed with this condition. He has had genetic testing only a..." + (show)
@mklam

My Husband has just been diagnosed with this condition. He has had genetic testing only a couple of days ago. I didn't know there were type of trials and this may not apply to us, we live in Canada.
We are looking into adaptations we may have to make in our home to ensure his safety. More importantly I would like to find some treatment to slow down the muscle loss
Merle

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Merle, I am also in this same situation. Maybe we can find someone to give us some suggestions.

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1 reply
mklam | @mklam | Feb 23, 2022
In reply to @charlie01 "Merle, I am also in this same situation. Maybe we can find someone to give us..." + (show)
@charlie01

Merle, I am also in this same situation. Maybe we can find someone to give us some suggestions.

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What course of treatment has your dr prescribed?

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charlie01 | @charlie01 | Feb 23, 2022

Predizone and mycophenolate.

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1 reply
charlie01 | @charlie01 | Feb 23, 2022
In reply to @colleenyoung "Hi @charlie01, I'd like to add my welcome along with @becsbuddy. You'll notice that I moved..." + (show)
@colleenyoung

Hi @charlie01, I'd like to add my welcome along with @becsbuddy. You'll notice that I moved your question to this existing discussion about BMI
- Inclusion Body Myositis: I'd like to talk with others https://connect.mayoclinic.org/discussion/inclusion-body-myositis/

I did this so you can connect with @mklam @catharbert @tarmansbks who are talking about treatments and things you can do for yourself to help manage Inclusion Body Myositis.

What symptom or symptoms do you find the most challenging at the moment? What helps?

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I believe my disease may have started after an auto accident in 1997 which damaged nerves in my back and resulted in loss of fine motor skills in my hands. Not diagnosed until the last three months. Recently, within the last year, the strength in my legs have deteriorated drastically. I have fallen several times and now I am more comfortable using a walker. My balance is off and my legs just collapse without warning.

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Catcando | @catharbert | Mar 8, 2022

Thanks for setting up this blog on IBM. I have reached a critical point where things seem to be progressing more quickly and I'm not prepared for the results. My plan is to go to Switzerland in a few months if there are no breakthroughs. I expect to be seeing the Alps before anything that will help me is available but it would be nice to have hope. Thanks again.

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Catcando | @catharbert | Mar 8, 2022
In reply to @charlie01 "Predizone and mycophenolate." + (show)
@charlie01

Predizone and mycophenolate.

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How are the side effects of the mycophenolate? Are there things you can do to minimize the side effects. And is the combination of the two drugs helping you?

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 8, 2022
In reply to @catharbert "How are the side effects of the mycophenolate? Are there things you can do to minimize..." + (show)
@catharbert

How are the side effects of the mycophenolate? Are there things you can do to minimize the side effects. And is the combination of the two drugs helping you?

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@catharbert Good morning. I know you didn’t ask this question of me, but i also take prednisone and Mycophenolate. I’m not aware of any side effects to Mycophenolate except very occasional diarrhea. I’m slowly tapering off the prednisone. I had 8 rounds of cytoxan (cyclophosphamide) which jump started the healing in my brain. Then the prednisone kept the healing going. I’ve been on Mycophenolate , since i stopped the cytoxan. It is now doing the job of prednisone .
I have to admit that I don’t have IBM. I have an AD that leaves lesions on the brain. :-(.
Has your doctor suggested the two drugs?

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charlie01 | @charlie01 | Mar 8, 2022
In reply to @catharbert "How are the side effects of the mycophenolate? Are there things you can do to minimize..." + (show)
@catharbert

How are the side effects of the mycophenolate? Are there things you can do to minimize the side effects. And is the combination of the two drugs helping you?

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Haven’t noticed any significant improvement. I try to walk with my walker. It gives me confidence about not falling. I do wear compression to keep down the inflation occasionally.

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