Canada Research
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Dr. Tarnopolsky Research Diet and Exercise
Following are presentations from Dr Tarnopolsky with his views on diet and exercise. He is a premier Canadian scientist working with Myositis and is plugged into the worldwide network of similar researchers. He has made it his personal journey to come up with potential remedies to offset the disease’s effects.
Exercise and Nutritional Interventions for Patients Suffering from Inclusion Body Myositis - Part 1
Exercise and Nutritional Interventions for Patients Suffering from Inclusion Body Myositis - Part 2
Supplement Questions
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I would like to know the recommended daily amount of creatine powder for adults with Myositis. Should this dose be taken every day with no break for life? Is there a problem if you stop at some point? Any recommendations for when and how to take it (i.e. with water, juice, food etc.)? Will Myopeople with Dysphagia have trouble swallowing the Creatine?3 Mg's per day is the recommended amount of creatine for adults with Myositis. A one month pause after a 3 month trial is OK but many take it daily, like a vitamin since Myositis increases our bodies need for more than the Canada food guide recommendations. There is no problem with stopping it at any time, but a consistent daily regimen will usually establish a positive effect after 3 weeks, and is what is recommended. Using a form of sugar (e.g. Orange Juice) with Creatine can magnify its effects positively. The product that we provide has its own sugar added for the mentioned reason. We are told that the Creatine tablets are identical to a candy called Sweet tarts, and dissolve on your tongue, so no dysphagia Issues.
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Is there a recommended brand of mitochondrial cocktail for IBM? What are the essential ingredients of this cocktail? What are the contents of Muscle 5, so we can assess any contraindications with all of our other meds? Is a KETO diet okay to try with IBM?The studies that we did with CoQ10, Vitamin E and Creatine showed improvements that we believe help with Mitochondrial function. The ingredients to Muscle5 include medical (24 g whey protein isolate, 16 g milk protein isolate, 3 g creatine and 1000 IU vitamin D per scoop) and non-medical (natural French vanilla flavoring, sugar, stevia and soy lecithin). We've had the contraindication question before and we aren't aware of any. However, it may be worth having a trusted Doctor review the ingredient list. Dr. Tarnopolsky is not a fan of Keto dieting, feeling that it just makes for a fatty liver.
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I would like to know the recommended daily amount of creatine powder for adults with Myositis. Should this dose be taken every day with no break for life? Is there a problem if you stop at some point? Any recommendations for when and how to take it (i.e. with water, juice, food etc.)? Will Myopeople with Dysphagia have trouble swallowing the Creatine?3 Mg's per day is the recommended amount of creatine for adults with Myositis. A one month pause after a 3 month trial is OK but many take it daily, like a vitamin since Myositis increases our bodies need for more than the Canada food guide recommendations. There is no problem with stopping it at any time, but a consistent daily regimen will usually establish a positive effect after 3 weeks, and is what is recommended. Using a form of sugar (e.g. Orange Juice) with Creatine can magnify its effects positively. The product that we provide has its own sugar added for the mentioned reason. We are told that the Creatine tablets are identical to a candy called Sweet tarts, and dissolve on your tongue, so no dysphagia Issues.
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Is there a recommended brand of mitochondrial cocktail for IBM? What are the essential ingredients of this cocktail? What are the contents of Muscle 5, so we can assess any contraindications with all of our other meds? Is a KETO diet okay to try with IBM?The studies that we did with CoQ10, Vitamin E and Creatine showed improvements that we believe help with Mitochondrial function. The ingredients to Muscle5 include medical (24 g whey protein isolate, 16 g milk protein isolate, 3 g creatine and 1000 IU vitamin D per scoop) and non-medical (natural French vanilla flavoring, sugar, stevia and soy lecithin). We've had the contraindication question before and we aren't aware of any. However, it may be worth having a trusted Doctor review the ingredient list. Dr. Tarnopolsky is not a fan of Keto dieting, feeling that it just makes for a fatty liver.
Keeogo Powered Walking Assistance Device Questions
LAY SUMMARY MYOSITIS CANADA – February 2, 2024
Sporadic inclusion body myositis (sIBM) is currently classified as an autoinflammatory muscle (AIM) disorder, but it is different because, unlike other AIM, it typically appears in older men and does not respond to usual medications. It is also challenging to diagnose as many patients have unnecessary tests, including biopsies and procedures, as well as side effects from medications and severe muscle weakness and disability.
The goal of SOAR (Sporadic Inclusion Body Myositis NOvel Autoantibody and Biomarker Research) was to perform over 20 types of blood tests in a large group of patients with sIBM and compare the results to patients with other types of AIM to determine whether they are helpful in the diagnosis, prognosis and predicting outcomes. In turn, the information will help us better understand what causes sIBM, use an evidence-based approach to treat it, and monitor response to therapy. As we generated a large amount of data, we used artificial intelligence (AI) to help interpret the results of the study.
We are grateful for the funding we received from Myositis Canada in 2021 to conduct this study. Through SOAR, we have made several important findings. In our comprehensive testing of autoantibodies including novel biomarkers that have never been tested in sIBM, we found that the frequency of seronegative gap (patients with no autoantibodies) decreased. However, further work to identify even more biomarkers is needed as some patients remained negative. We also revealed that sIBM can be differentiated from other types of myositis using artificial intelligence algorithms to identify unique patient subtypes based on established and novel myositis autoantibodies.
These findings have been published as abstracts and shared with other researchers around the world at six major rheumatology conferences, including the Canadian Rheumatology Association Meeting and the American College of Rheumatology Conference. These were presented by our trainees, ranging from undergraduate, graduate, and post-graduate levels who were involved at all stages of the project. Our rheumatology fellow, Dr. Eugene Krustev, will be undergoing additional clinical and research training in myositis at John Hopkins next year. He plans to come back to Calgary to start a myositis clinic and continue to work on myositis-related projects with Dr. Choi.
As a result of this work, we have further developed our research ideas and initiated several new projects. We were recently awarded the Arthritis Society Stars Career Development Award ($375,000) in January 2024 for our new ideas that were built utilizing the pilot data that were generated from SOAR. We have secured an additional $32,000 in peer-reviewed funding (McCaig Institute for Bone and Joint Health and the University of Calgary). These projects will involve creating a new myositis research registry in Alberta providing opportunities for patients with all types of myositis to participate in research and potentially clinical trials in the future.
We want to thank the patients, our collaborators including the Canadian Inflammatory Myopathy Study and Dr. Mark Tarnopolsky and his patients with sIBM, as well as Myositis Canada for their support. Our achievements would not have been possible without their involvement!
IIM Patient Research
This is the presentation from Dr. Mo Osman from the MyoCan May AGM.