Hi GG, 2 yrs. on Mestinon only. I have been very lucky. Normally, more than just Mestinon is needed. Prednisone works well for most MGers, and from what I gather most are pleased at the results experienced vs side effects. Have you had your Vit. D levels checked? Low levels are associated with autoimmune diseases. My 2nd Neuro( Md., PhD., NIH guy) ordered a Vit. D test our first meeting. When he saw it was low, he recommended D3 supplementation. There are studies showing that D3 has some therapeutic effect in T-Cell mediated autoimmune disease. http://www.ncbi.nlm.nih.gov/pubmed/22672742

I think my vit D level is okay, but I can ask about. Thanks for you reply. I am pretty new to this and it has been very up and down for the past 3 months, not being able to diagnose. Do you think you will be on Mestinon for the rest of your life? I have been on it 3 days and it already feels like that, although it feels nice to a bit stronger.

I took just Mestinon to begin with, but needed the prednisone shortly after as my symptoms progressed.

That is what I am experiencing now. I started the Mestinon a week ago and felt I got some immediate relief, but then yesterday, the 5th day of taking it, I felt I was back to square 1, but I was not taking the full dose as prescribed, so today I am going to try the full dose of 3 tabs a day instead of 2 and go from there. I guess everyone is different in terms of the level of MG, their activity/work/stress level.

I also feel I would like to try the time release tabs and not have to watch the clock for the next dose. I set the alarm on my phone to alert me when I need to take it.

Another thought is you/we feel better so we do more and use up mestinon quickly.

I was prescribed 1 tablet 3x a day. I will be up to that dosage today. How much do you take? I would hate to keep increasing it.

For most of us MG is progressive without medicine to dampen the immune system production of bad antibodies. I started with 60 mg 3x per day and after a stay in the hospital for breathing problems about 5 weeks after diagnosis was prescribed 90mg about every 3 hours as needed and began prednisone. The mestinon helped me function but the prednisone kept me alive. Mestinon will not stop the destruction of receptors and at a certain point we lose so many we can't function (and in the old days died).
However each of us has a different level of MG, and certainly some folks can get by with mestinon only and other can't. So if you have to continue to increase the dose then you know you are headed for a crisis without additional medicine.

MG is not a disease to be fearful of the medicine--remember in the days before prednisone (1950s and early) MG was essentially a death sentence for most folks -- and within a year or two. Somewhere between 30-70% of folks died prematurely from MG before prednisone came along. So being afraid of the medicine to the point of not taking it is a rather poor strategy if you want to survive and thrive.

Good Luck

You brought up some very good points, thank you. I will see how I am feeing on the Mestinon and when I go back to the neurologist, discuss it with him. I am finally taking the full dose of Mestinon, 3 tabs a day and half-tablet 3 hour intervals and I feel a bit better, so keeping my fingers crossed, but I won't disregard prednisone after reading your post.

Mestinon treats the symptoms; prednisone, Imuran, cellcept, IVIG and other meds treat the disease itself. If the disease is not treated, then MG most likely will progress, since MG is a progressive disease. Mestinon puts a band aid on our boo boo. :-)

Both of your comments made me see things differently, especially about Mestinon just treating the symptoms, prednisone treating the disease. I am prepared to start prednisone with that said. See what happens next week. This site has been so helpful, which is kind of sad, that I get better info and help from strangers than I do the neurologist I have been going to! I am so grateful I found all of you.