Clinical features and progression of IBM, Tahseen Mozaffar, MD

This was a session from The Myositis Association's 2019 Annual Patient Conference in Minneapolis. Myositis is often a challenge to diagnose, sometimes taking years to distinguish from other disorders. This is especially true for those who live with sIBM, many of whom say they suspected something was wrong a decade or more before they were diagnosed. This session will discuss the signs and symptoms of IBM and the course this disease usually takes.

[@TraceyPoland]

This lecture really deserved good audio

[@garymcdonnell6693]

I was diagnosed with IBM a few weeks ago as a result of muscle biopsy. It took about a year to get the diagnosis. i was admitted into a hospital 3 different times during the year.

[@douglasdunbar2298]

My first event of ibm was walking with my wife and dogs on a beach my right leg folded under me my first thought was I had stood on a bit of quicksands I thought no more of it being an insulin dependant diabetic I get checked eyes blood and weight at that time I registered a weight loss of 7 kilos my reaction to this was wow that’s good but this was to turn out to be a sinister event my activity was not impaired at all but I noticed my legs at the upper regions had become thin my doctor said I should see my physio this is when I was told that this state was serious then I was examined in hospital. A blood test showed high levels of ck several weeks later I had a nerve conductivity test after some time I had a muscle biopsy again there was a time lapse of a few months I had begun to fall when walking and not keeping my knees locked I then had make walking a new regime of goose stepping I was diagnosed with ibm the time scale was 3 years from the quicksand episode to be safer I used crutches to to stabilise my walking

[@timokuusela5794]

I have IBM, and I was prescribed Prednisolone daily. Instead of that, I in the beginning started taking 225 mg only saturday morning after breakfast(68 kg male). Why such "rebellious", "unorthodox" idea?
In animal tests, daily doses caused muscle- and bone loss, and, most importantly, shut off the muscle repair system of the body. The weekly dose did not any of those, and boosted the repair system; not using the Primary Effect of the drug only, but starting a Secondary Effect. Now, after a year,( before that the progression of the IBM was noticeable and quite rapid), my strange medication with added creatine and HMB has stopped the weakening of the worse left side and the right side has gained strenght. Coupled with the "prosthetics effect", learning to cope with a problem with mobility, has returned my mobility almost to the level nobody will notice anything, unless I try to run, or walk down stairs without the handrail as a brake. My left leg has only few kg:s of straightening force, my right about 25+ kg:s. Hand grip force left 15 kg:s, right 25, so carrying, say, Jerrycans is challenging but improving... My "wrong" way to medicate myself with the cocktail of once a week dose of corticosteroid, creatine supplement and HMB has helped me. There is no doubt about that, I can measure the difference or lack of it at home. But would it help everyone with IBM, possibly not, it is to the medical experts to find out.

[@AliAli-jn3cr]

I have symptomes for 2 years ago, not diagnosed yet, but so scared. I have some atrophy in muscle

[@BabyloveTesano]

What is HMB?i have been diagnosed and looking for help and tips. Thanks for sharing

[@sulo_727]

you should look into testosterone therapy