Reply To: Stem Cell Transplant

Lori222: I have looked into Rituxan and have a lot of concerns. My local neurologist is opposed — he thinks that the downsides are too extreme. I went to see Dr. Latof, at Cornell Weill in NYC, to go over my entire set of records and test results. He was quite sure that I have CIDP — he said that, in his clinical experience, about 50% of long-term CIDP patients end up showing no demyelenation, as the healing from the IVIg over time allows some recovery, which is always in balance with the ongoing destruction. He told me that his team has done stem cell transplants, cyclophosphamide, Rituxan, and just about everything else available. He thinks none of them routinely work, although they do occasionally have some benefit in some cases. He thought that the successes at Northwestern are most likely a result of careful selection of candidates — an entirely legitimate approach for a clinical trial. He thought that Rituxan was too dangerous, with long term weakness of the immune system and possible cancer in the future. So, I certainly don’t mean to discourage you, and I am still thinking about it, but for the time being I think I will hold off. Good luck, and I would be very interested in how it works out.

Fred