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Tuesday, June 27, 2017
New clinical trials for MG cytoxan/revimmune
Hi there I was diagnosed with MG 16 years ago. I have tried so many treatments and none have worked so far. Mestinon, Cellcept, Imuran, Prednisone, IVIG , not even Plasmaphereseis. Which even my dr couldnt believe didnt work so we tried that on 2 seperate occasions (5 day treatments, once at the radcliffe in oxford and once at UAB here in the states). I am only 31 so I am always actively seeking new treatments to try. So far we have tried to stay away from the more harmful drug treatments because of my age and the damage long-term that they cause. I wanted to try the Autologous Hematopoietic Stem Cell Transplantation trial in chicago, but I missed out because of the criteria of not having already had a thymectomy (I was diagnosed over 15 years ago, the limited info ive gotten on that is that the most people who are lucky enough with that usually have it done within a year or 2 of diagnosis..) Have you read the articles about the high-dose cytoxan for the treatment of MG? Do you know if there are any "un-advertised" studies for that "Revimmune" treatment? Do you have any advise that you could give on other treatments that you personally have had success with with your trickier MG patients that I can ask my dr about?
It sounds like you have had a really rough time with MG. Often it responds well but in your case it has been remarkably difficult.
My experience with high dose cytoxan for unresponsive MG is limited -- one patient. And, of course, I worked with an oncology doctor/team to make sure that the treatments were well managed. I don't know of any unadvertised studies with Revimmune.
My advise to you is to "hang in there" and continue to work with a team experienced in treating MG. They will be able to consider the severity of your MG, risk of side-effects and treatment alternatives.
Some of the new treatments are promising. As long as your health is fairly good, you will likely have a much better idea five hence as to which new treatment is a winner and which ones proved to be of little help.
I wish you the best.
John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati