Well this is what we did this summer with Haven. It's a fairly new process and is being used in aplastic anemia and MS patients. With the evidence that ROHHAD is an autoimmune disease Hopkins felt this would be one of the best options for Haven. Since then I have found articles written on Revimmune. I didn't know that word existed until I typed in to google "high dose cyclophosphomide". It is very interesting to read about. I have a few areas that were most impressive to me.
Revimmune therapy consists of an ultra-high intensity, short-course, intravenous formulation of cyclophosphamide. It is believed that Revimmune "reboots" a patient's immune system, thereby typically eliminating the autoimmunity. The "rebooting" process is achieved because Revimmune eliminates the cells causing the autoimmunity and spares the stem cells in the bone marrow. These surviving stem cells are then able to repopulate a restored, uncompromised immune system.
The HiCy 1-time regimen used in the current study has been shown to be safe and effective in autoimmune diseases, including lupus erythematosus, autoimmune aplastic anemia, and myasthenia gravis.
The regimen, which was developed about 15 years ago by Robert Brodsky, MD, and Richard Jones, MD, hematologists at Johns Hopkins, works by eliminating the "misbehaving" immune system while preserving hematopoietic stem cells, allowing the immune system to "recreate itself from scratch."
And then during my random searches I found this in a forum - from 2006:
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 and CIDP. 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.
There are many articles out there about Revimmune.....I am actually excited that Hopkins approved Haven for this and we actually saw results.
And yes there is even a web site called: gothicy.com