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Hi Tonya –
I often wonder if the treatment that I receive is appropriate and have wondered if I should seek another opinion. Not to verify that I have gMG, but to verify that my current treatment plan is appropriate. I have not seeked another opinion because I do not want to go through the diagnosis process again. There seem to be so many variables between those that have MG and the treatments that they receive. All seem to consist of the same elements – Mestinon, Prednisdone, Imuran or Cellcept or other immunosuppressants, although the ammounts of these drugs vary. Seems that most do not have regular/maintenance IVIGs. I do not understand How the Neuro’s determine how much of what and when. Art/practice.
I have been treated for gMG for about 3 years now although in retrospect, my symptoms started a year or two before. I have not had a Crisis that required hospitalization. I have been close a couple of times.
I do IVIGs every month and my Prednisdone dosage is 10mg/day. I also take Mestinon and Imuran daily. I have never been on high doses of prednisdone.
The one time I was slipping into a crisis, double vision raised it’s ugly head as well as some other symptoms, I immediately increased my Prednisdone to 20mg/day and stayed there for a number weeks. I did contact my Neuro and he approved this increase. I did wean back down to 10mg/day. The wean down back to 10mg/day took a couple of months.
I feel fortunate that I was diagnosed relatively early, in my disease, and that my progression into severe symptioms was stopped – so far.
I have no idea how much of a Prednisdone increase is warranted after a crisis, but it apprears that the ammount varies from patient to patient.
My VA Neuro’s treatment is on the conservative side.
I would consider my condition to be stable, not in remission.
Good luck,
Scott