I get plasmapheresis every thursday & ivig every friday. On this regime, I seem to do very well. However, if I even try to skip one week, I get paralyzed from the throat down & have vision problems & all the other fun stuff that goes along with it. The only problem is that it is costing $70,000 to $80,000 a month and my primary insurance is about to cap out. My doctor knows this treatment keeps me stable, but she isn’t sure that Medicare will approve this treatment as it is atypical or so she says. She has been talking to me about taking Cytoxin for months now & I am somewhat fearful of taking it. My spouse has a friend whose husband took cytoxin & he ended up having severe problems & permanent damage. His life has never been the same and they have told us I should steer clear of it at all costs. Has anyone here had any permanent problems as a result of taking cytoxin?
Read my post on my updated Cytoxin administration, that I am on my 16th month’s dose coming up in two weeks…I just posted an update today.
At least I have been basically status quo, without going into respiratory distress and dieing, like two of my doctors predicted I would by this past summer.