Quote:
Originally Posted by Nicknerd
Thanks, Alice.
You had mentioned in another post anti-ryanodine antibodies, which I'd come across in the past, but had forgotten about...I feel like I prolly have these because of my continuous bulbar sx (and thymoma) which seem to be resistant to prednisone....I'm supposed to start Imuran, but I have a feeling that it wont work because it works in the same way prednisone does (at least in terms of the type of suppression of the immune system it does)...
I guess I should get tested before assuming I have them, but I feel pretty certain...I wonder what treatments is the best for this type of antibody...i'm attracted to the idea of making a new immune system from scratch because I don't have to be on the medication for months and then find that it hasn't worked, plus it might get rid of the other autoantibodies I have permanently too (anti-dsdna, ana, thyroid)...At least I'll know right away, as opposed to 6-12 months later...It's so hard to know what to do...
I've also heard that rituximab might not work for my type either (achr positive, with severe bulbar sx)...
Thanks for taking the time to respond- I appreciate it! 
Nicky |
the pathophysiology of MG is much more complicated then it seems. it is very far from being the best understood autoimmune disease, and autoimmunity is not well understood in general.
we tend to think of autoimmune disease as one abnormal antibody, causing one problem, but in reality this is probably not the case. any immune process is polyclonal and not monoclonal (unless it is a rare type of cancer, in which there is over-production of one single antibody).
further more, any immune process involves both antibody producing cells and other immune cells, that "work" together to eliminate the invading pathogen. (this is what the immune system is basically meant for).
our tests are very limited in the antibodies they can detect. this does not mean that there aren't others that we just don't test for.
what caused the immune system to recognize self as non-self, is a major unsolved question, but it probably has to do with some (probably genetic) abnormalities , either in protein related to the immune system (mainly those involved in recognition of antigens), or in proteins related to the "attacked" cells.
this is one of the concerns with vaccines. as they lead to a relatively less controlled activation of the immune system, and may cause on-going immune dysregulation in patients who are prone to that. a relatively rare. but real complication.
I am not aware of any information regarding subsets of patients that do not respond to rituximab. overall there is very sparse data regarding this treatment in MG. I am not aware of any study (double blind or even open lable) that assessed this mode of treatment in MG.
I would not be too attracted to the idea of rebuilding your immune system. it sounds very romantic, but in reality it means a week or more of hospitalization in isolation. and a fairly long recovery to what you were before. with a significant infectious risk for more then a year, and possibly even more in someone who has had a thymectomy.
so your neuro's reluctance to do that, sounds very reasonable to me.
hope this helps and is not just more confusing,
alice