Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi fellow MGer's
I have not posted in quite sometime as my M G has been under resonable control. I was diagnosed in July of 2015 and went the same route as most everyone on here. I finally found a great neurologist at USF in Tampa FL who has worked closely with my situation. Once I was established with the new neuro, she started me on IVIG treatments which were administered 3 times a month. My situation has been stable and I have been able to continue working but I'm now facing a new problem. My platelet count has been on a downhill trend for the last two years. Its now getting to be in the low 70's where the normal range is 140 to 400. It seems like a trend in which I am dropping around 4 points every three months. I have been reading up on the different medicines that I take for MG and several suggest that platelet count loss can be a side effect, especially if you are above 60 years of age. These medicines are as follows.
Mestinon, Cellcept, IVIG and Prednisone. I also have to take Xarelto as I found myself in the hospital with severe blood clots which IVIG can contribute to. General information on the web suggests that Mestinon, Cellcept and Xarelto can all contribute to the loss of platelets.
I am just posting this to see if anyone else is, or has experieinced the same problem. I have an appointment with the hematology department at Moffit at the end of the month to try and find a solution for my downward trend.
Thanks
RD
Good to hear that you are getting along OK with MG. We don't hear that often enough.
Sometimes folks with a problem thymus have low platelets, so I imagine it would be reasonable to have that checked again (scan probably) unless you have had it removed.
You can search this site for previous discussions of platelets using a google site search. Here is a search on myasthenia and platelets from my chrome browser
platelets myasthenia site:https://www.dailystrength.org it gives this result
https://www.google.com/search?q=platelets+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&rlz=1CASMAI_enUS760US760&oq=platelets+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&aqs=chrome..69i57.10659j0j7&sourceid=chrome&ie=UTF-8
Hope you get it figured out. Side effects of MG meds may be, as you suspect, the problem.
Good Luck
Russ
cellcept is one of them actually dangerous to mg, i would advise you to check them with the side drug.com. they state about 50 side effects and mg is one of them, also you should check all meds given, in the net name of the drug,pros and cons, side effects. i myself for my benefit would, that is the only way to prevent disaster befor it begin
good luck(fighter