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

Seeking other people with IBM (inclusion body myositis). The most recent posting to this group is dated 3/10/19. I've been diagnosed and would like to see more current users/ contributors.

@catharbert, Both @wwill and @mklam who posted in this inclusion body myositis discussion are still active on Connect and hopefully will respond to your post.

Don't know if it is fair I chip in on this because I don't have the condition but I had a dear friend who lived with IBM for 30 years. She was active for 95% of the time until the end due to pneumonia during covid. She was able to travel, host friends and family, and was ambulatory and self-reliant for the most part with help of her lifetime husband.. Her greatest relief came from going to an indoor pool where there was a chair lift to lower her into the water. She was eventually diagnosed by doctors at Johns Hopkins after years of searching for answers. She visited there for many years getting treatments particularly to help a painful knee. In later years, she transferred care to Hershey Medical Center which was 8 miles away. All in all, I had the deepest respect for this intelligent and stalwart woman who faced her diagnosis with courage and resolve not to let it inhibit living life to the fullest. I wish everyone experiencing IBM the same.

Thank you tarmansbks for your post. Hearing about your friend gives me encouragement to keep going.

I was recently diagnosed with IBM. After much consultation with my neurologist and rheumatologist I have concluded that there are only a few very if-y therapies for this one of which is steroids. Since I have osteoporosis and steroids destroy bones that was a non-starter. I have been trying to exercise almost every day. The best I can do is about a 20 minute walk in my neighborhood and lifting free weights. I am 77 years old and I've read that people who are diagnosed later in life tend to have a more rapid deterioration than younger people and I feel that is true in my case. I would be happy to participate in a clinical trial if one was available or any research that I could tolerate. I will also donate my body to any research program on this dreadful disease.

I am sorry to hear this update. Your best of a 20 minute walk and using weights sounds very proactive and involved in your self care. Are there any therapeutic water pools available to you? My friend Gloria never let it get her down so far she couldn't find space to continue finding something meaningful about living. Even if they were small things to some, they were triumphs for her and she was grateful to be able to adjust..

Just diagnosed months ago. Treatment has included prednisone and mycophinolate. Muscles continue to deteriorate. Any suggestions for treatment or self help appreciated.

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?

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?

Thank you Ted. I will follow your discussion.