@Aditya_Kumar_Sahni 

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Aditya_Kumar_Sahni

HSCT and JC Virus

Hi everyone! I am 24 and planning for getting HSCT done but a few concerns have been restraining me from doing so... 1) I have secondary progressive MS and do not know if I have any active lesions. (I have read Dr. Richard Burt saying that the transplant is not effective for progressive MS and such people may look for other stem cell therapy options and on some MS page that hsct can help some people with early progressive, if they are still experiencing active inflammation). 2) I have been tested highly positive for JC virus (the index being 3.84) to which my haematologist says that to avoid risks of PML they would not administer Rituximab during the transplant protocol and rather increase the dose of other two (cyclophosphamide and ATG) to compensate. My concern is when Rituximab alone is administered safely even when JC virus is positive and considered safer than ATG (the reason Rituximab can be prescribed by neurologists and not ATG), how safe ATG would be as far as the the risks of JC virus getting reactivated are concerned. I would have trusted the doctor (haematologist) who has been into this for quite some time now without having to apply my mind, but, at the end he says that we are still learning. What if he gets to learn that even ATG is risky during BMT from the standpoint of +ve JC virus. He would learn and I would lose my life. I have MS since 2011 (dx 2015).
@merfield

@aditya_kumar_sahni, I think only you can decide to take the risk or not with guidance from your neurologist .....from what I can gather, it works for some but not for others. I’ve read MSers from the uk either travel to India or Mexico for treatment so you are fortunate to live where you can get post HSCT follow up care. A uk journalist called Caroline Wyatt went to Mexico for HSCT so Google her-I think she wrote a blog. Sorry I can’t be more helpful xx

@Aditya_Kumar_Sahni

@merfield thank you, I think I should try Rituximab first and then if it doesn't work (I am sure it will work), I might think of HSCT and the associated risks. Any idea about the efficacy of rituximab for spms ?