For my two cents worth, LOL.
All treatments medications therapies have risks that come with them. The risk/benefit ratio is something our docs have to play with every day of their practice. (called practice cause it is NOT an exact science, the medical community is always learning, always growing)
So with each thing you put in your body it is a crap shoot. There is the expected outcomes and then the issues that arise that are not helpful or even deleterious to us.
FYI: one side effect of tylenol??? a headache!! LOL how's that for an illustration??
We all have to work with our docs to get to a place whether it be remission or improved quality of life. To do this one must be willing to explore the options available to us. This is the whole reason we go to the docs. We can sit home and wring our hands and poor me and look at the negative POSSIBLE side effects and die or we can get off our butts and be aggressive in seeking that "magic mix" that is out there for each of us. For some who are lucky it means mestinon and nothing else. For others a touch of prednisone. Still others its an all out war.
Another thing we must remember, the side effects from most any treatment can be counteracted by another drug/treatment. Can be totally mitigated. Yes it means another pill, but do you want to get better or not?? Again comes down to sitting and wringing your hands or working and turning over every stone. Yes these treatments/drugs can possibly present other issues for us to deal with, but that is part of that risk/benefit game.
We have to remeember that the list of negatives is only that. A list. If ONE single person reports that they got a hang nail while taking aspirin then the PDR has to list it. Does that mean that if you take Aspirin you will get a hang nail?? Chances are much better that you will NOT than that you will. If Aspirin caused hangnails as a rule, they would have to pull it from the shelves I imagine or have a black box warning on it at least.
Medications and treatments are all those of us who are sick have.
My own regimen is daunting and semi effective, but without it, I am in resp failure.
IVIG 60G every monday
60mg pred qam
cyclo 200mg twice a day
mestinon 60mg 2po every 4 hours
mestinon ts 1 at bedtime
and one other that is being "tested" so will just say another pill each day
Drugs I have tried and failed:
Plasma exchanges weekly (worked well until blood count stopped recovering and became severely anemic and need transfusions about every 4 weeks or so.
Imuran, cell cept, prograf and one other I can't remember the name of, but it had to be compounded and was similar to what is used to poison birds.
My best advice, find a doc who you trust to lead the ship. Do what he/she recommends and deal with what happens if anything.
You will never know if you don't try!!
Some folks of course can't take some of the treatments due to a multiplicity of medical issues outside of the MG, I think that is what Annie was saying about herself in her quest for cure/remission/improved quality of life. And that is a whole nuther issue. So again, find a doc you trust. work with him/her and get the best possible treatments to get the best possible outcome.
hugs