Hi,

first, I want to apologize for not having a lot of time to come here, and chat.

I am thinking of you, and of how we can improve the understanding and managment of this illness, and am trying to do something about it. slowly, but hopefully surely, though it is very hard to know.

as part of that, I have discussed with my neuro that he will start writing about some unusual observations, that are considered "impossible" in MG.

one of those is the worsening (instead of improving) of MG with steroids. and I am not talking a about a transient worsening initially, but of continous worsening with treatment, and gradual improvement with the tapering down of the steroids.

I was wondering if any of you have experienced this? obviously, it is quite rare (he has only one more patient apart from me that has this problem), but existent.

my "story" with steroids was that 5 years ago, I recieved high dose steroids during my crisis, and once the PLEX was stopped, I went into another crisis again, about 4 weeks after starting the steroids. my neurologist at that time thought it was "impossible", but fortunately my pulmonologist/anastheisologist didn't give a *******about what he thought, and I had PLEX again, the steroids were stopped and within a few weeks I gradually recovered to some extent.

about 2 years ago, after my illness progressed to the extent that I was intermitently respirator dep. , I was seen by one of the leading experts, who thought I should be given steroids. he explained to me that what happened before was the well recognized transient worsening of MG with steroids. (obviously, he had very little respect for the neurologist that took care of me before, assuming that he didn't know that, and not there was something unusual about the way my illness got worse).

I was so desperate at that time, that I was ready to do what ever he recomended. again, I had PLEX, with significant (and very short lived) improvement, followed by a gradual increase in the dose of the steroids. again I had the exact same response. but, this time I was told that it was transient and I will be much better when I go home. I was also told (again) that the pattern of worsening that I had was "impossible", and the fact that my SFEMG at a time of profound weakness and respiratory insuff. was completely normal gave support to that.

so, (stupid me) , I put my trust in him, and kept on taking the steroids, until I nearly died, and then decided to start trusting my own clinical judgement, and began to taper them down.

it took a very long time, because by then I had supression of my adrenal gland with fairly significant addissonian symtpoms, so I could only decrease them very slowly.

so 2 weeks ago, I was finally able to stop taking them. I still have addissonian symptoms, which combined with the symtptoms of MG are not easy to handle, but they are gradually becoming less. I am still not back to what I was before this treatment (which wasn't that great either) but possibly will get there eventually, and be well enough to tolerate other treatments, that are now too dangerous for me.

so I was wondering if any of you have had similar problems with steroids?

alice