Meg

Anonymous
June 13, 2010 at 5:54 pm

Meg,
I’m sorry I missread your first post, the age limit is 65, therefore your hubbie is a prime age. How’s it going? Has he been referred to NWU for Stem Cell Transplant?

Meg…

Anonymous
May 26, 2010 at 12:16 am

Your husband is not as atypical as you might think, there have been many of us with CIDP who have not responded to IVIG, Plasmapheresis or steroids. I have been on this forum for 8 years now & could name quite a few. Based on the tests he has had already, I would wager that his dx of CIDP is correct. As far as the Northwestern trial, I would imagine that he would probably be an ideal candidate; insurance companies would probably not want to spend that amount of money for someone who is doing quite well with conventional methods, particularly something as cheap as steroids.

As far as axonal or permanent damage, I am assuming it would be in his feet or lower legs? Maybe some in his hands? That does not mean that it is not worth arresting this illness; it will only get worse if left untreated. And trust me this CIDP can get much worse, at my worst I couldn’t even sit up in a wheelchair, raise my arms, use my hands, etc. And no amount of conventional treatments made me any better.

The SCT is based on the same treatment plan that I had back in 2003, use high dose cytoxan to wipe out the immune system & let it reboot, minus the bad antibodies. The main difference is the controlled environment at Northwestern & the time frame (17-18 days?) I had monthly cytoxan for 9 months, most have it for just 6, & probably ended up with the same result. Insurance paid $800 a month versus the cost of IVIG & PE. I think for them it was a “nobrainer.” One must be careful not to go in crowds, as to avoid germs & sickness at all costs. If you want to know more, just email me, or if you would like, I could call you…
Pam

Meg

Anonymous
May 18, 2010 at 2:19 pm

Hello Meg, welcome to the GBS/CIDP family! My heart & prayers go out to you & your family! Soooooooooooooooooooooo sorry your Hubbie does not meet the critieria for SCT. I pray that he finds comfort & healing in other treatments & other ways. Warmest welcome!