Quote:
Originally Posted by Nicknerd
Wow...It seems like you're right on!
It's funny you mention Duchenne's...I looked up 'prednisone + DHEA' because I was thinking that I should maybe take DHEA since it's suppressed while on steroids, and I came across info. on how Duchenne's is treated with prednisone which I didn't understand why, but now do...
When I was reading postings by Cowgirlup, I felt that she must have the same antibody as me- the one that causes my strange symptoms because our sx are sorta similar, at least from what she described...I agree that I don't think that the achr antibody is causing at least the majority of my sx. My titre is 2.88, and my MG is severe. I know that the docs. say that the titre, at least when it comes to MG, is not related to severity of sx, but the titre of antibodies in other illnesses is, so it seems that maybe something else is going on.
I asked my neuro. yesterday if I was tested for the ryr and titin antibodies, and he said that I wasn't because it wasn't necessary in diagnosing the MG (I also suspect that they never suspected that I had a thymoma either...I think they thought that I had the MuSK type).
Anyway, I think that you are definately right on the money...What you say makes perfect sense, and yes, I was convinced that I had some other illness for the longest time because the mestinon didn't work for me at all, it seemed...I have to admit that it does work now, especially the time-release, so I'm still wondering what's up with that...It all is very complicated, but keep doing what you're doing...If people have the ryr antibody, then prednisone shouldn't be prescribed to them because it just makes things worst!
P.S. My SFEMG was very abnormal..It was done in my forehead (where I didn't seem to have any sx).
Nicky
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Nicky,
it's much more complicated then that.
I don't have anti-Ryr (I had it tested), but I do have anti some type of MuSK.
I think you need to have a combination of impairment in calcium entry into the cell and in the function of the Ryr, or some related protein, in order to do worse on steroids.
I won't go into the details of my own illness, as I am still not entirely sure what's going on. I think I have most of the pieces of the puzzle, but not all yet.
it does not at all surprise me that you SFEMG was abnormal, nor does it surprise me that it was anbormal in a muscle that did not seem to be clinically involved. it's just another (possible) proof that although the acetyl-choline receptor antibodies, impair the depolarization of the membrane, it doesn't effect the muscle contraction that much. only when you add steroids to the equation which lead to further impairment of caclium entry into the cell, do you start having problems, and that's why you only started to have droopy eye-lids, once you started taking steroids.
I also find what you nero said quite unreasonable. we are constantly trying to find better ways to stratify patients, and not only diagnose their illness, as leukemia or lymphoma, but also to know their prognosis and adjust their treatment, according to the sub-group they belong to. so, I would think that knowing if you have other antibodies is extremely important in making managment decissions in your case.
also, tacrolimus has a direct effect on the ryanodine receptor, and that's the way it supresses the lymphocyte response, and there is one small study that suggests that MG patient with anti Ryr do better with it then with other immunosuppresants, because of this effect on Ryr. obviously, this is not enough to prove anything, but it should (in my oppinion) at least lead to some futher thoughts on the matter.
the person that has done the most research on Ryr, is Romi. but, it seems that his approach is very controversial in the western world, and as you see most of the studies on this are either from his group, or from the far east.
of course I am just speculating here, but possibly you will do better as you taper down the steroids.
alice