At my visit to Vanderbilt last month, the neuro recommended that I try Cytoxan as an immune suppressent. I talked to my neuro who spoke with the Vandy neuro and my neuro referred me on to an oncologist for a consult.

I met with him last Friday with a list of questions. He had done some research into the treatment of mg with cytoxan and printed me off an abstract from a double blind study done in 2002 on 23 mg patients. I grant you that's not a lot of people, but with a disease this rare, I'll take almost any double blind study that has been done. You can find the abstract here:

http://www.ncbi.nlm.nih.gov/pubmed/12115946

I also asked him if he had ever treated anyone with an autoimmune disease with cytoxan. He told me that in the last 6 weeks alone, he has had 3 new patients with other autoimmune diseases referred to him for cytoxan. It's too soon yet to tell if the treatments are working, but they haven't had any unusual side affects at the low dose they are taking.

Based on this study, all the research my daughter and I have done and after discussing with all my docs, I'm going to go ahead and start the infusions Monday. If I react negatively (nausea, hair loss, etc.), I can stop right away with no additional side affects.

The goal is to reduce my dependence on predisone (I've been taking it pretty steadily for about 7 years) and hopefully, get off Cellcept and reduce the amount of IVIG I currently receive. One additional benefit I am praying for is to lose the double vision. I have been wearing a patch for 2-1/2 years and it is getting really tiresome!

Wish me luck and I'll keep you posted on how it goes