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

I have not experienced any significant side effects.

Who is running the gene therapy trials? Would like to research those. Or info on any other trials.

@charlie01 - You can find all of the Mayo Clinic Clinical Trials here - https://www.mayo.edu/research/clinical-trials/search-results. You can also search for clinical trials here - https://www.clinicaltrials.gov/

Thank you John

I have recently been diagnosed with IBM.

My major concern is the swallowing difficulty. Only 25% of those with IBM have this muscle group probkem.

Does anyone have advise on how to deal with the challenges of IBM?

ABC

Good morning and welcome to Mayo Connect. When I saw the title of your topic, I was a little confused, and needed to figure out what IBM could possibly be in this context, so I looked it up. Here is an existing discussion of IBM (Inclusion Body Myositis) that goes back to the early days of Connect. https://connect.mayoclinic.org/discussion/inclusion-body-myositis/?pg=4#comment-683848 To see the most recent posts, find the little box that says "Oldest to Newest", click and choose "Newest to Oldest"
I hope you can find a few people to connect with there.
Sue

Hi @abuela4, I wanted to to add my welcome along with Sue's. You will see I moved your post to the discussion that Sue suggested.
https://connect.mayoclinic.org/discussion/inclusion-body-myositis/?pg=5#comment-733940
I did this so you could meet others with inclusion body myositis (IBM)

You might like to read this article as well:
"Treatment Strategies for Dysphagia in IBM · by N Mohannak · 2019 · Cited by 17 — Minimally invasive methods should be considered first-line to improve swallowing in IBM patients with ..." --- Dysphagia in Patients with Sporadic Inclusion Body Myositis: Management Challenges: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901064/

Can you share a little more about your diagnosis? Are you currently experiencing symptoms?

I have heard of gene therapy. My husbands neurologist hasn’t recommended this to him I think because he is too deteriorated. As a caregiver to my husband who has suffered this condition for 12 yrs., I would advise anyone with this condition should try anything the medical profession has to offer

I had to go with Myfortis, the Cellcept caused acute gastritis. It is the same drug but enteric coated to protect your stomach.

“They” say that none of the things you mentioned really make any difference. Yes, exercise but only until you feel tired. In other words exercise for us is the opposite of “no pain no gain”, if you feel pain they say stop. I exercise each day and feel like it has made a difference but that’s just a feeling. In other words I feel like I’m making a difference by walking and doing arm and hand exercises.

Diet is just to be “balanced“, eat a healthy diet is all I’ve been able to find out. I have read no more than 30% of your diet should be fat, and I make sure to add protein shakes to my daily routine.

I’m averaging about 3000 steps a day which is about 500 steps a day less than a year ago.

I was diagnosed about 15 months ago, I have noticed slight declines in all categories, but I feel good.

Prayer has brought me the most strength, I am a Christian man.

A small group of us have started a new nonprofit to try and raise money for stem cell therapy and other cutting edge research.

It’s a brand new organization and the website is still under construction but should be operational in the next 30 days.

http://Www.gettingup.org

If interested in communicating more my email and phone number is on that website.