Reply To: CIDP – HSCT Clinical Trial, Dr. Burt Chicago

Chirpybirdy,

As I read your description, it seems that you did not fail two drugs. You said IVIg keeps things in check, which would generally be called a success. As it is working, you probably are suffering very little axon damage, and the damage to the myelin is likely minimal too. Yes, it is a drag to be on IVIg, but at least it works. You seem to be concerned about having to use assistance; I am too. Are you noticing increasing deficits at the end of your cycle? If so, then you might consider IVIg either more often or in a bigger dose. Yes, it’s even more of a drag, but more IVIg might prevent any significant decline.

Be that as it may, another reason to consider delaying HSCT is to allow for refinement in the technique. I was reading the other day of a man with MS in the UK who did HSCT. His disease progression was severe and nothing was helping. That is why he did HSCT. It worked miraculously for him. However, after 5 1/2 years, his symptoms came back and are now pretty bad. Did it give him 5 good years, essentially resetting the clock? Yes, it did. But, given the damage done by the chemotherapy, it is doubtful is he can ever do HSCT again. So unless some new MS come along, he will only get worse. If your CIDP is reasonably well controlled, it might be a good idea to wait a few years for the process to get better.

If your doctor is working with Northwestern and is advising against it, my guess is that you would not meet the acceptance criterion.

I know I have been pretty negative about HSCT in the post. In general, I think it is a great idea, but it is still a more a last-resort option than a go-to one. Still, you know you best, so if you see thing that convince you that IVIg is not effective, go for it.

Godspeed in your decision,
MarkEns