High-Dose Cytoxan (Cyclophosphamide)
I am, like you, very interested in high dose cytoxan. However, rather than pursuing the route of receiving one infusion per month over a five or six month period, I am interested in the “Revimmune”, or “HiCY” protocol, now in clinical trial at Johns Hopkins. This protocol is basically the same dose of cytoxan that one would receive as conditioning for a bone marrow transplant. Over a four day period, you receive enough cyotxan to completely ablate, or wipe out, your peripheral immune system. Then, when your white blood cell counts bottom out to undetectable levels, you are given injections of Neupogen which cause your bone marrow to go into overdrive producing new white blood cells. They call it “re-booting” the immune system. The protocol has had spectacular results in a number of autoimmune diseases, like aplastic anemia, Lupus, multiple sclerosis, sarcoidosis [U][B]and CIDP[/B][/U]. The protocol has produced long-term remissions. You can Google Revimmune to research more. This treatment seeks to eradicate the autoimmunity, rather than “manage” or suppress it. For people with severe disease particularly those who are younger, and who are finding modest results with immunosuppresion or IVIG, it makes complete sense to me. Obviously, it has risks and it is not a “natural” treatment. You lose your hair, etc. But I, like you, am young. I’m 46, and am very disabled. I once was extremely fit, and was an expert snow skier.
The issue right now is that Hopkins has narrowed their focus to completing the next phase of a clinical trial for Revimmune to treat multiple sclerosis. Thus, I believe it will be difficult to obtain this treatment “off-trial” for a disease like CIDP for at least another year.