Reply To: SCT

This forum has over 25 topics with more than 200 posts about SCT. Simply use the “forum search” function to bring them up and read through them.

I looked into having HSCT in 2013. I found two viable programs in the US that I looked into: Seattle and Chicago. They are both in Clinical trials here:
https://clinicaltrials.gov/show/NCT00716066 Seattle- Dr Georges
https://clinicaltrials.gov/ct2/show/NCT00278629 Chicago – Dr Burt

I selected Dr Georges even though Dr Burt is the more famous of the two in CIDP circles. The two main considerations for me were cost and reliability of results. Cost includes all medical fees, travel expenses, room and board, local transportation, meals, caregiver, etc. The total cost was around $500K. Insurance, if it pays at all (Medicare wouldn’t pay a cent for me), will pay a portion of the medical cost. You must be able to afford all other costs. Although there are many who swear by the effectiveness of HSCT and feel “cured”, there are those that went through the hell of SCT and found themselves relapsing later. I asked Dr Lewis at a 2013 meeting in my home town https://forum.gbs-cidp.org/topic/meeting-of-los-angeles-california-gbs-cidp-support-group/ what he thought about the viability of SCT. He told me and the audience in attendance, that it was an experimental treatment that had not yet shown a high level of reliability or successful repeatability for a large number of those afflicted.

Because of high cost and low success rate, I stepped away from pursuing the treatment, even after crowd-sourcing considerations to mitigate the costs.

Health Canada shows some SCT programs here: http://ctdb-bdec.hc-sc.gc.ca/ctdb-bdec/info.do?submissionNo=169177&lang=eng although this clinical trial appears to be for the medicines used in the chemo-therapy phase of SCT.

Please let us know if you decide to pursue it and what you learn. Best of luck in finding your solution and bettering your health!