This is interesting. Alice DiCroce reports on her extraordinary success with Stem Cell transplant. Her own stem cells were used. See her website at: http://www.alicedicroce.com/index.html This is VERY intriguing!
She was treated at Northwestern University. The clinical trial is still underway an they are currently recruiting participants. See: http://clinicaltrials.gov/ct2/show/NCT00278629?cond=cidp+AND+%22Chronic+Inflammatory+Demyelinating+Polyneuropathy%22&rank=9
The NIH has a good web page on Hematopoietic stem cell transplants. See: http://stemcells.nih.gov/info/scireport/chapter5.asp. I read somewhere that some insurance cos. are picking up the cost (reportedly $125,000)
I was speaking to a woman with CIDP who said that her doctors “were not big proponents of the the stem cell stuff at this point given the current research.” I wonder what the issues are? What are the risks? Certainly an issue is whether insurance will pay. But when I think of the cost of my monthly IVIG, I would think that the insurance company would be intrigued at the possibility of getting me off IVIG.
I agree about the insurance issue also. I spoke to my Dr. about this to, and he looked at me as if i were crazy he said it could also kill you. I have read of a couple of great outcomes of the stem cell transplant procedure, and have yet to see where it has hurt anyone. It seems these people go thru alot for a few months with really good outcomes in the end.
Good news! Our new member Rossana had stem cell transplant. You can read about her journey with CIDP and SCT on her blog @ http://rossanascidp.blogspot.com/
I came across this this morning: http://www.sciportal.org/archives/109
I have not had a chance to watch it yet though.
I had my Stem Cell Transplant done last June and Im cured from CIDP ! They dont like using the word "cure" yet, but to me it has been a cure. No symptoms or meds since June 2010. It s a new treatment, new option for us.
You can read more about my story on my blog http://rossanascidp.blogspot.com/ and if you have any questions feel free to contacct me directly. I'll be more than happy to help and answer any questions.
I am so fed up with having CIDP. I would love to persue the SCT but I don't know how I would ever get 3 months off from work. I would lose my job and then lose my insurance coverage. I hear you need a minimum of 3 months off and that is just for the procedure then you need a few more months to recouperate at home - some people needed 9 months off before returning to their job. I sure hope they can streamline the time needed in the future. I think about this all the time but know I could never secure that much time off of work. This makes me very sad.