Hi @dexter651, welcome to Connect. If you feel comfortable, would you mind sharing a bit more about your situation so members have a bit more to share with you as well?

How long have you known about having inclusion body myositis? What sort of treatments does it require? What sorts of foods do you currently eat and are you looking for foods that help manage your condition better?

Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

I'm tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

Why don't you tell us what foods to eat? I want some good news. I don't need to hear more stories of what does not work.

I have recently been diagnosed with sIBM and would love to talk about any effective activities/choices to mitigate the problems living with this untreatable Autoimmune disease. Certainly there is the push for non-stop workouts to build muscle. Are there diets, supplements, vitamins, specific "dos and don'ts", weather, etc. that make any difference? It would be great to share experiences.

I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.

Hi John and Monicasue,
It has been a very long time since I have been on the blog. Monicasue. I experienced similar symptoms you shared with us. Steps, tripping, getting out of chairs, into and out of bed, weakness in my hands, etc. I thought it was my arthritis. My Rheumatologist diagnosed me in July of 2018 with Poly Myositis and started me on 80 MG of Prednisone weekly. Nothing changed. Then in December, Mayo re-diagnosed me with IBM Myositis. The reason for the re-diagnosis was that Mayo used different dyes to test the muscle biopsies. I was told that there is no treatment yet for IMB except exercise. I have been moving towards an all plant based diet (albeit difficult with family not being on board). I am convinced that diet and exercise will make a big difference in my quality of life. There is the "Annual Myositis Patient Conference" scheduled for September 5th - 8th in Minneapolis. Are you planning on attending? I hope to find more information on issues such as the best diet, exercises and mobility support devices, progress on treatments, studies, etc. It will be my first conference. Also, the Myositis Association itself is a big source of information. Many states have local chapters that you can join. I highly recommend it if you have not already.

Hi Becky,
Thank you for your ideas. If you don't mind, can you share what autoimmune disease you are dealing with?

@kentyunker @monicasue and others -- Here is the agenda for the Annual Myositis Patient Conference for 2019 in Minneapolis.

2019 Annual Patient Conference Agenda
-- https://www.myositis.org/myositis-library/annual-patient-conference/2019-annual-patient-conference-2/

Hi mklam,
I can really empathize with your husband. Stairs are a menace to me, getting up out of low chairs, and having my legs buckle whenever they feel like it. I also agree 100% on your comments about exercising. It is difficult to keep doing something you don't want to really do that does not immediately produce results. Yet carry on we must! I also believe that the food we put into our bodies will also define our quality of life. I am in a deep dive study of that now.

Regarding the TMA Minneapolis conference, you can contact The Myositis Association online at TMA@myositis.org. It should give you the whole story. If you need more, the telephone number is 800-821-7356. If that doesn't work, jump back on this blog and someone of us will help you in any way we can.

Good luck and GOD BLESS BOTH OF YOU!