Quote:
Originally Posted by suev
Alice md...
RE: your #9
In your experience/opinion/belief, is this statement true of any type of MG...ie. that there is no permanent damage? I know this may not be able to be scientifically proven (am I right in saying this?), but I wonder for the following reason.
My neuro has offered to put me on pred to prevent 'further stress' to the NMJs and with the possible hope of remission. Since I do just fine on Mestinon, I have always refused the offer (for 3 years now). My thinking is that I don't want to use a hammer on something that can be handled with a fly swatter. And, worse case, I could always use the pred later if necessary.
Thanks for your thoughts
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No permanent damage to the NMJ, does not mean that there is no evolution of the immune disorder leading to the production of auto-antibodies.
Physiological and pathological immune responses are a dynamic and evolving process.
This is a somewhat simplistic explanation-but, when there is an exposure to a foreign antigen, there is production of relatively non-specific antibodies (which are not very effective) within a few hours to days. This is then followed by a series of changes in immune cells which lead to the production of more effective antibodies as well as memory cells which will "remember" the antigen if there is another encounter. Those antibodies are much more effective in attacking the offending pathogen. And also the cells which produce them are much more resistant and long-lived.
The dynamics of the immune system when there are autoantigens and not foreign antigens is less well understood, but there are studies which suggest a similar type of evolution of the immune system.
Even if this is the case, quite likely after 3 years, you have reached the peak of the severity of your illness. So, if you do well with mestinon and don't require any further treatment, you have probably made a good and reasonable choice. Of course there is no way to tell for sure. But, as prednisone carries its own price, it may not be worth it in your specific case and more reasonable to take some risk.