Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My visit with Dr.Burt for stem cell transplant

I was just in chicago at Northwestern University for evaluation of allogenic stem cell tranplant for ankylosing spondylitis.
Not sure if many of you are aware but I have been in contact with Dr. Burt for 3 years now in developing a protocol for AS.
He does NON MYEOBLATIVE stem cell transplants for autoimmune diseases (please read up on the difference between myeoblative and non myeoblative to really understand this).
He has "cured" my friends wife from scleroderma. she had the transplant 3 years ago and is in perfect health. He will never call this a cure since it's non myeoblative but most of his patients are in a full remission. He told me it may take up to 18 months but he will now develop a protocol. please feel free to contact his office if you have an interest. His nurse is wonderful and her phone number is 312-908-0051. Lets push AS to the forefront of advanced medicine like a lot of diseases!!

How exciting!

Wow!!! That is SO exciting. Best wishes.

I've read an article about actual regression of bony growths following stem cells transplants.

WOW - Finnari. That is sooo exciting. As it puts boney growths (osteophytes etc?) into remission, then, just think, could ALSO help with DISH (Forestiere's disease). What a stunning breakthrough.

Yes. Let's indeed push AS to the forefront of research. Way to go man -

That's aMAAAAZing!!!

Thanks for the update. Well done, you, for working on this. You rock!

Love and hugs,

Fantastic news. Where else is this procedure done and will it ever be rolled out everywhere?

Absolutely fascinating. Thank you for your courage to be a pioneer patient in this possible treatment alternative.

I found a stem cell clinical trial for AS at Clinical Trials with the identifier of NCT01420432. Should be interesting to see the results of this trial. You can Google the identifier to take you directly to the web page

I will be the first person with AS to have the allogenic transplant by Dr. Burt. But once he writes up the protocol it will be open to anyone with AS for evaluation.
It was interesting to talk to him. He first goes to a healthy sibling for the harvest of the stem cells (i have two sisters). they must be a match including the HLA B27 gene. this is what's tripped him up he says. He must transplant that geneotype. Most people with HLA 27 do not have AS. For example I am scandanavian. 24 percent of us are positive and 1.8 percent have AS. It's by far the highest subgroup of people. normally 8 percent of caucasians have BLA27. If my sisters dont match up he will go to a registry where he says I have a 60-70 percent chance of a match.
It's still going to be a long road. But it's something I have been persueing since meeting Dr. Burt at a talk 3 years ago. He invited me for an evaluation after I had my rheumy email him with my "problems" with substandard response to TNF therapy.
I'm very excited about the possibility and one day i will have this done.