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...
Hello all. I have had MG since 2015. I currently get IVIG every 4 weeks for 5 days. I take 250 mg of imuran and take 15 mg of prednisone daily. Over the last few months I have been having a day of uselessness. It happeens about every three or four weeks apart where for a complete day I cannot function. I am exhausted, full of pain and chills. I am not sure if it is part of the progression of the MG. I am wondering if anyone else is or has had those episodes or if this is new and not connected to the MG. Any comments would be appreciated. Thanks, Al
what you going thru with you are faced with exhaustion is due to the ivg.s ,in my 10yrs. of mg, i had 3 treatment of ivg,s my secon and 3rd. treatment where due to mg crisis and dint particurarly felt to much exhaution in the first and second,
but started to notice in my 3rd., i beleive due to the fact, that this treatment was more lenghty than the priors,, toward my 3rd month i started noticing changes with my body as extreme exhaution during and after the ivg,s . since infortunatly i have thalassemia (low red cells, count-anemia) wich affect my my sence of feelings when i was on ivg.s
i was able to compensate and actualy is to me as a signal that i need to sleep to regain my strengh.
ivg,s with the time and extensicve lenght of tratment will cause you exhaution, dont feel like the world is comming to an end, take a nap to allow your body to regain its strenght
also talk to your neuro and endocrinologist because you may have an issue with imuran,being a drug for orghan transplant it may create some side effects which may not go with you
best of luck
Andre
The regularity of the bad days gives you a chance to try a little science. If we make a guess that the bad days are caused by something else, then trying to pin down what that is requires marking events on a calendar -- maybe for a few months.
Mark days you get IVIG, days you do other things and days you feel bad, and then see if the bad day follows something else. Things like stressful events can also cause problems, special foods, and so on.
.
I did have bad days sometimes at random, where I just was so tired I spent the day resting. Possibly they were caused by something I did, but wasn't sure. I know that after a stressful day with my wife who was taking cancer treatment, sometimes I really was wore out.
I adjusted by taking more mestinon and that helped.
Good luck
Russ