Reply To: Stem Cell Transplant

Anonymous
May 25, 2012 at 2:53 am

Lori, yes! Both the sjogren’s and cidp are in complete remission. Everyone I know/talked with/read about/etc that had sct for cidp is seeing improvements with one exception. You can go to the fb page “Help Jon Heal” to read his story, but he had initial good results, then got worse. He’s from New Zealand and he might go back for a 2nd sct. He has the anti-mag version and that might be a factor. When they started the trials on MS, they learned there is one variant that the sct doesn’t put into remission. Might be this is the variant for cidp. However, Jon posts (and will tell you if you ever meet him) that he still feels it was worth it as he did have a few months of relief and believes he would be dead now if he hadn’t done it. So don’t want to make it sound like a 100% success … but he’s the only one I know of out of 30+ that didn’t get positive results. I can’t remember what the atg rabbit targets??? I think t-cells, but seriously have forgotten. It’s surprised me how much of a “medical” brain dump I’ve done since getting home – really putting this stuff in my rear view mirror … 0f course it could also be either old age or chemo fog! I will post when I remember! LoL

I so hope the rituxan works for you – I didn’t get sick on it but did get headaches. I was bald by that time and wore a beannie to keep my head warm in the hospital. I just packed the beannie with ice packs and the headache would go away. The nurses were laughing at me because there were some serious drugs available to me but I choose ice packs. I’m just sick of meds … I hope you don’t have any problems with it – seems like most of the folks I know that did have nausea was from the cytoxin.

I will be following your story closely and praying for positive results.