This Is MS Multiple Sclerosis Community: Knowledge & Support

The following is from a post on the Boston Cure Project sites:

'HSCT is acronym for hematopoetic stem cell transplant. I underwent this procedure about 2 years ago under the care of Dr. Richard Burt, an immunotherapist at Northwestern and probably the best in the country if not the world for this. It involves "rebooting" the immune system by collecting bone marrow stem cells, then drastically reducing the immune system thru a combination of chemo drugs, then injecting the stem cells which are cryogenically preserved during the chemo process. Procedure went well, went from 4 relapses while in the Tysabri/Avonex trial in a year to no drugs and no relapses in two years post transplant. Modest improvement in EDSS score, went from a 2.0 to a 1.5 after one year, mainly eyesight and some leg strength improvement. Others with higher EDSS scores showed more dramatic improvement, one guy from Colorado going from a 6/7 to a 4'.

Does anyone have any experience / knowledge on HSCT? Given the immune system involvement, perhaps immunologists should take over on MS research. Neurologists have been at it far too long without any real results!

Ian

Any idea of the cost?

Ian,

Dr. Mark Freedman, a MS neuro at the University of Ottawa has done this kind of bone marrow transplantation for MS patients. The CBC ran a special on the procedure last year and two patients were profiled.

It is very high risk because the patient's immune system is pretty much "killed off" before the removed marrow cells, after being treated, are reinjected back into the patient. Severe damage to the liver is a major complication and one of the profiled patients died from this.

The second patient survived and was doing OK but I haven't heard of anything on her condition for several months.

This procedure is still very much in its infancy and supposedly some patients do better than others. No long term data is yet available.

Harry

We went to a seminar and she was apparently there. Dr. Freedman tried to get her up to speak but she declined. Apparently she is walking and doing much better. Hearsay as far as I'm concerned as why wouldn't she come forward. Made me wonder if she was there at all.

_________________
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

I think I posted this before, but HSCT is moving to Phase III trials right now...or they have already started in Europe maybe...



Haematopoietic stem cell transplantation in the treatment of severe autoimmune disease: results from phase I/II studies, prospective randomized trials and future directions.

Tyndall A, Saccardi R.

Department of Rheumatology, University Hospital Basle, Basle, Switzerland. alan.tyndall@fps-basel.ch

Around 700 patients have received an autologous haematopoietic stem cell transplant (HSCT) as treatment for a severe autoimmune disease (AD). The majority of these have been within the context of phase I/II clinical trials and following international guidelines proposed 7 years ago. In general, a positive benefit/risk ratio has led to phase III prospective randomized controlled trials in multiple sclerosis (MS), systemic sclerosis (SSc) and rheumatoid arthritis (RA) in Europe. In the US, similar trials are being planned for SSc, MS and systemic lupus erythematosus (SLE). Transplant related mortality (TRM) has fallen in all disease subgroups since the inception due to more appropriate patient selection, and so far a clear advantage of the more intense myeloablative regimens in terms of remission induction and relapse rate has not emerged. Although each AD has a different profile, over a third of patients have sustained a durable remission, often with no further need for immunosuppressive drugs. In those who relapsed, many responded to agents which pre transplant had been ineffective. The study of immune reconstitution and gene expression pre and post HSCT is being undertaken to further understand the mechanism of autoimmunity.

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The TV special named "The Pioneers" was a W-Five show on CTV. They still have the links for all four parts of the show. It's a must see.

Here's the link:

http://www.ctv.ca/servlet/ArticleNews/s ... ?hub=WFive


Dunmann.

The Fred Hutchinson Cancer Research Center has done some work in this area. Here's a link to an article they published in their magazine in Spring 2003.

http://www.fhcrc.org/about/pubs/quest/s ... mmune.html

Unfortunately, I have not followed their developments in this area since that time.

NHE