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Originally Posted by davew41
I just got this tonight ...cellcept... (liquid form) and wow reading the booklet and all the fun we can have on it,, well it may very well sit in the bottle for a long time. possible causes of at least 2 types of cancer ( trying to fight cancer with lambert eaton i get a cat scan every 3 months and blood work) all kind of wonderful infections, this stuff sounds like a treat..
o well not much treatments left to get me going again as ivig does almost nothing for me neither does the prednisone anymore..
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Dave, have you tried 3,4 Dap? It is the go to drug for Lems. I take it with mestinon and it makes a difference in strength. I also have other suspected autoimmunes, so am not near normal and have to do plasmapheresis as well. I am hoping to get on some immunosuppressant other than prednisone soon, as it doesn't do anything for me other than raise my blood sugar and make me feel worse.
Only certain doctors can prescribe Dap, but it is free in the US on a compassionate use basis through Jacobus Pharmaceuticals. If you haven't tried it, you really should give it a try. It is similar to mestinon in that it is short acting and only intended for symptomatic relief and not an immunosuppressant. No major side effects and has been used to treat Lems for over two decades.