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

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@catharbert

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.

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Replies to "I was recently diagnosed with IBM. After much consultation with my neurologist and rheumatologist I have..."

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..