Stem Cell Transplant for CIDP

Symptoms and Treatments Complementary CIDP
1

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)

2

Here is another SCT story: http://rossanascidp.blogspot.com/

3

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.

4

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.

5

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/

6

I came across this this morning: http://www.sciportal.org/archives/109

I have not had a chance to watch it yet though.

7

Hi everyone,

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.

8

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.