Inclusion Body Myositis Treatment

This video provides an overview of #Sporadic #Inclusion #Body #Myositis and complements the previous video on Inflammatory #Myositis. Many thanks to Debi for pointing out an important omission of Speech Therapists in treating dysphagia - they are clearly of great importance and value!

[timokuusela]

I was diagnosed IBM about 3 years ago. I was prescribed Prednisolone (not Prednisone, that is why the following), but instead of following the prescription, daily doses, I at the beginning started to take 25 5mg pills only saturday morning(matches my weight as a single dose, I am 68 kg male). The Prednisolone has primary effect of suppressing the inflammation, but using it daily leads to muscle- and bone loss. The once-a-week seems to have no such problems at all, and it starts body to have a secondary effect that was discovered in animal tests;instead of suppressing the normal muscle repairing system of daily doses, the weekly doses boost it. Though the kreatine leak is now cured, it does not mean that the illness is gone, but since I started this Unorthodox treatment, I have gained mobility, and my less affected right side is definitely stronger. All my lab results as blood samples go are now like 30 year old, I am 61. So, I may be a somehow special case, a miracle, but my way stopped the progress of the IBM, for a while at least. Now I know I can still go boating and riding my motorcycles next summer. I also use supplementary daily kreatine and HMB, so all help is wellcome. I will fight this Evil.

[jimmathews]

Thank you Dr. Freilich. I am an IBM patient and a pharmacist by degree. I have done my own extensive study of relevant research papers. I find your offering here to be one of the most concise reviews of IBM. Thank you for producing this easy to understand video. I do not wish to despair anyone who believes they have the "truth" as one respondent has stated. However, their truth does not coincide with mine.

[timokuusela]

And yes, while I had no pains, before my own treatment, there was like mild stinging/burning/sore feeling in those muscles that were decaying. Not any more.

[mwtrolle]

Hi there.
Any information on the effect of taurine and MSM implementation on Inclusion-Body Myositis patients?

[debirabe]

You never mentioned one of the primary treatments: Speech Therapists who are specialists of the swallow.

[stellaclapp]

Dr, Freilich, there are many in our IBM support group who would disagree with you on the matter of pain both here in States and over seas, Also you failed to mention that some of us end up on a feeding tube due to dysphasia.
It can shorten our life, if we didn't have IBM we would't aspirate and get pneumonia or choke to death. Falls can be deadly also, especially when we hit our head.

[pxtokarev]

I've been one of these poor guys for the past many years now. Had to stop working as an MD 4 years ago.
A couple of days ago I got Covid19 too. Let's hope the virus will be lenient to me.

[jamesharris]

i have Inclusion body Myositis what best for swelling condition treatment .

[ruzaraki]

@dr Simon freilich
hi dr Simon freilich I see your video today at 2020 and I have question Is this disease have any treatment? or not

[dro]

It isn't painless...that is MISINFORMATION