Forum

HSCT

hello. hope everyone is as happy as this f****ng disease allows.

I was diagnosed in 2001 and was told my a neuroquack a few years later that I appeared to have ‘rapidly evolving, severe, relapse remitting ms’.

I have been on tysabri for 14 years phase 3 onwards still progressed. Want to have HSCT to replace my crappy immune system. My neuro is putting me forward for the trial but he doesn’t think I’ll be accepted.

I am prepared to go private for this. but cant in this country right? can go to america for a ‘reasonable’ $125000!! germany for £45000 does anyone know of alternatives??

Andrew

You can go to Kings in London and get it on the NHS, but you need to meet the criteria.

I have just come off Tysabri after 4 years. Felt like I was getting worse faster on it than I had been before I started it. But everyone else seems to do really well on it. What was your experience Andrew?

Sewingchick,

Whilst on the phase 3 part of the trial tysabri was really good, no relapses, and it left me virtually symptom free. Then the pml scare occured. Trial was suspended for 17 months. I had 2/3 relapses. Progressed fast. Then restarted on the trial till last october. Had no relapses whilst on tysabri but got steadily worse and no better from the damage done during the suspension.

Then doctors discovered the JC virus connection to pml. Im sure as a tysabri ‘user’ you will have been tested for that. My neuro thought as I was JC+ and id been on tysabri for 14 years !! Too risky for me!!!

My JC virus levels (or is it levels of virus mutation? something bad anyway) got too high. I had my last dose of Tysabri at the end of the year and I started on Gilenya last week. I’m worse this week - that is, my walking is worse, from a very low starting point.

I’m too disabled and too much of a scaredy cat to go for HSCT or even Lemtrada.

These groups on facebook have lots of info. I have just started the ball rolling by applying to Moscow. From research so far it seems Dr Fedorenko there has had good results and no mortality.

Are you being assessed to see if you can have it here? I would have thought the NHS was better than Russian healthcare, but maybe that’s just prejudice.

Cheaper at the point of delivery - that’s for sure!

It’s not even so much the up-front costs that would worry me, though, it’s the follow-up care. There is a lot to be said for getting scary stuff done locally if you are going to get it done at all - particularly if the going gets sticky.

Alison

I don’t think there is any chance of me getting anything other than level 1 DMDs here. Seems that Lemtrada is only available once there is more progression than I have and I don’t fit the criteria for HSCT in England as I haven’t failed on a level 2 DMD.

I don’t want to wait and see. Whilst I am still relatively ok and there’s a chance I can get back my life and hope for the future, I want to throw the best possible treatment at it.

I have a provisional date for the first half of 2017 and although I still have more research to do, I am confident from my information so far that the Russian clinic has a sufficiently good reputation internationally. I am planning to place my life in their hands though so of course I will be sure that my homework is thorough.

Next step - fundraising !!

The cost of one years dmd’s is the same as the cost for a complete HSCT. treatment. You should be allowed a choice. The NHS - you would hope -will be pushing this treatment to those suitable for it.