Has anyone had HSCT and able to give advice regarding the treatment? My partner is currently on Tysabri and has had two new lesions on the treatment, so is looking at alternatives and would like HSCT. He has an appointment with his neurologist at the end of the month, but thought I was ask for peoples opinions on HSCT that has had it? Thank you!!
No personal experience, but this facebook group should be able to help.
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Some very interesting links there. I’m curious about AHSCT as much because I don’t qualify for anything else. Acceptance criteria (medical) for AHSCT are pretty stringent too and that’s before you apply for funding.
A fair few people who have had the procedure have been to Moscow for it. Presumably that avenue is closed at the moment - Putin’s backyard etc.
As someone with smouldering PPMS and therefore no other treatment on offer, it’s almost a case of “what have I got to lose?” Apart from a ton of money. £90k private in UK v £40k in Moscow but don’t know how old those figures are.
Speaking as a long term PPMSer, I understand the “nothing to lose” argument very well. Curiously, I think Moscow is still an option, although unsure of the cost involved.
I have been taking ldn on the NHS for nearly twenty years and convinced it has slowed down progression, but doubt it can correct damage already done. Perhaps Fampyra is worth a look?
Isn’t there a drug called ocrevus that you could try?
Ocrevus only prescribed when consecutive MRI’s show a differential. Smouldering MS there is no evidence of inflammation activity (NEIDA) even though symptoms are worsening.
Have a look via Google for the blog by BBC journalist Caroline Wyatt and her HSCT experiences.
All the best Mick
No ocrevus is only prescribed if you fight for it i did but am now being referred to professor David Hunt in Edinburgh for hsct