Thanks Sewingchick I’ll give that a try.
The facebook groups are the best bet for anecdotal reports. This is the UK page.
UK HSCT for MS & Autoimmune Diseases
Thanks whammel I will look that up. Have you thought about having HSCT? I imagine it’s not yet readily available but maybe in the future?
I did think about it a couple of years ago, but as a long term PPMSer the chance of any benefits seem slim and I am doing ok with ldn, diet and exercise. However, if I was relatively recently diagnosed with RRMS and twenty years younger, I would seriously consider it.
The treatment is available on the NHS at Kings in London, but the criteria is quite strict.
http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html
http://multiple-sclerosis-research.blogspot.com/2016/01/what-is-autologous-heamatopeitic-stem.html
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Hello all - I haven’t read all of the posts in this thread, but I see that there are quite a few misconceptions about HSCT. Whammel has given some useful information - thank you! Edingirl, I had succssful HSCT for my PPMS in 2014. Not only has the progression been halted, but I have many welcome symptomatic improvements, too. Bonus! If you would like to learn more facts about HSCT, the best place to find them is in the Facebook HSCT forums. Whannel gave the link to the UK HSCT group in his earlier post. There are several others, too, including the main worldwide HSCT forum.
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I have my name down for Mexico and Russia. As many folk are having successful treament now the waiting lists are increasing. I put my name down a few months ago and was told the waiting list is 12-18 months fot Mexico ans 24 months for Russia. There are other newer facilities with shorter waiting lists but with less experience.
Moyna
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Thank you all so much. It is a treatment I’m considering and your feedback and links are invaluable.
whammel, could you put the link to the Stella’s blog on here? Am I right about the name? I think it was Stella who had HSCT in one of the early trials in this country and you’ve posted a link to her blog about it quite recently.
You need to scroll down a fair bit, but Stella’s update is there.
l have read many reports of HSCT - over the last few years. So far, l have not read of anyone who has actually had life-changing results. Most of the people have RRMS - and after this treatment - which is a dangerous thing to undertake - the only results l have seen is that they say they have not progressed. How do they know they haven’t when they are RRMS. The actual HSCT is pretty drastic - and they go through an awful time during the procedure - like anyone you who has had ‘chemo’. Of course they are going to feel better once their body starts to recover.
Most of us on here followed Stella’s blog — Such a brave lady - who ended up nearly dying. She lost fingers and toes - also her hearing. ls this the risk you would want to put yourself through.
There are several blogs you can follow of people with MS who have gone to Russia - and other countries to have this procedure. And of course those who are having it done in London and Sheffield.
As someone who has had PPMS for 33yrs - l know l would not be a suitable candidate. l would love to get back the use of my legs - be able to walk unaided - run even! - no more falling over. And most of all regain control of my bowels and bladder.
l have improved since going on the Biotin for Progressive MS - and l also take other B Vits. This has given me more energy - no fatigue. [And the thickest mop of hair ever] - Hopefully, other improvements - including re-myelination.
Hi Space jacket. What dosage of biotin and vit B do you take?
l have been following the MedDay trial - via a facebook group- Biotin for Progressive MS. l take 100mg x 3 times daily of the pure pharm grade 100% Biotin. l get this via Bulk Supplements US. And 100grams cost me £120 for a years supply [333 days].
Other B Vits l take are B Complex/Thiamine/Niacinamide and B12 in liquid form 5,000mcg -also l take Vitamin D3-20,000 ius- Magnesium and K2.
l get my vitd3 levels checked regularly by CityAssays B/ham.
Hello spacejacket! I also have PPMS and I can tell you that HSCT works for every type of MS, not just RRMS. I had successful HSCT in 2014. The aim of HSCT is to halt progression. Sometimes once the progression has been halted, the body is able to do some repairs, which is why some people who have had HSCT have had (bonus!) symptomatic improvements. I myself have several (bonus, remember!) symptomatic improvements. No more fatigue, brain fog, swallowing problems, bladder problems, drop foot… Even if the HSCT had “just” halted the progression - that would have been a complete success - nobody wants to get worse, do they?
I must also correct the misapprehension that the chemotherapy involved in HSCT is somehow traumatic or difficult. During the four days of chemotherapy I had as part of the HSCT, the worst I felt was mild nausea on the fourth day. I’ve has worse hangovers!
People here keep quoting the case of Stella (who is a friend of mine) as though her problems were caused by HSCT. Her problems were not caused by HSCT. Stella’s problems were caused by the mismanagement of an infection. If the doctors had treated the infection correctly, none of the issues that followed would have occurred. Those doctors are no longer involved with HSCT, thankfully. And the UK doctors currently carrying out HSCT have certainly learned from the mistakes made by Stella’s doctors.
HSCT works for over 80% of patients who have it. It is a serious procedure, but it is not dangerous when carried out by the right doctors, and most people don’t find it too difficult, either. I only wish that I had HSCT years sooner than I did, before any damage was done, because HSCT halts progression, it doesn’t mend longstanding damage. But no longer progressing (when previously my PPMS was progressing quite quickly) is a life-changing gift, and one that I am grateful for.
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But HSCT did not work for Stella! If you follow the link above, you will see that she says she is relapsing again and has been put copaxone by her doctor. That is not an HSCT success.
Also, I was very interested in your statement that 80% of people stop progressing after HSCT. Where does this figure come from?
Exactly. I was going to post this exact issue myself. If Stella went through all she did (and she and her OH Marc have my utter respect for their bravery and honesty about the blog) and has ended up still relapsing, then it wasn’t a ‘cure’ for her. A terrible shame, but it has to mean that HSCT isn’t a cure. And I understand that it was the infection rather than the HSCT that caused her major negative effects. I’m truly happy for everyone who’s had it and has achieved the end of relapsing and even positive improvements, but I don’t believe that it is a cure for everyone. Maybe one day it will be. I hope so.
Sue
Not at all sure, but this pubmed article might be a clue. I am sure that nothing works for everyone when it comes to MS though.
Hello Ssssue - you are correct, HSCT is not a cure (although “cure” is a subjective term) and I would never describe it as such. It doesn’t work for everyone, either - it isn’t understood why approximately 20% of patients are what is known as “non-responders”. The figures I have quoted are extrapolated from many different published scientific papers (the one linked to by whammel, above, was published by a collaboration of haematologists including the doctor who treated me, Dr Fedoreko) They are available to anyone who wishes to do the research I did before I went for treatment.
As a PPMSer, there was absolutely nothing else available as a treatment for me, which is why I did the research. And having done the research about the procedure and the facilities where it is available, and looking at how quickly my condition was worsening - I took the chance to be one of the 80%. It paid off for me, and my progression halted, so of course I’m happy to be an advocate for HSCT. That doesn’t make me blind to the negatives. But then the DMDs which so many take on the word of their neurologist have a lot of negatives, too. Treatments have to be a mater for the individual, who should educate themselves about the pros and cons.
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Thanks. I think these debates are well worth having to weigh up our options.
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Here’s a link to results from a ten-year study of Lemtrada, a treatment that has many similarities with HSCT. It’s a bit of a puzzle to me why people are so much keener on HSCT than Lemtrada. Is it because people hope that the unstudied drug has better results?
http://multiple-sclerosis-research.blogspot.com/2016/05/alemtuzumab-10-year-phase-ii-aan-data.html