I think it’s because, according to the MS Trust, there’s a 20 per cent chance of developing another auto-immune condition with Lemtrada. You could end up needing thyroid medication for life as well as MSdrugs 
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Edingirl
Where did you have the treatment carried out?
John
Hi John
I’ve not had HSCT (yet, I’m still researching). Gwen Higgs above went to Moscow.
But there is a 1 to 2% chance of dying if you have HSCT. I went for Cladribine rather than HSCT or Lemtrada, to try and avoid the death risk and the thyroid risk. Maybe you might look into Cladribine.
Also, be aware that the people in the HSCT Facebook group are very sure that HSCT is the answer for everyone with MS. I’ve been in it for a while but it always seems to me to be a bit religious - they only want HSCT believers in there.
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The theoretical risk of death from HSCT is 0.5%, Sewingchick. In fact, in Russia for example, there have been ZERO deaths out of over 500 MS patients. There was a lady who was very ill with Stiff Person Syndrome who died in 2014 - that has been the only death during treatment there. As an admin in several HSCT forums, I do not think that HSCT is for everyone, but I do want everyone who wants it to have a clear understanding of what is involved. If someone isn’t interested in learning about HSCT, why eould they want to be in a forum specifically about HSCT? The HSCT forums aren’t general support forums - there are others (like this one!) to fulfill that role.
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I was just commenting that the HSCT Facebook group only has positive things to say about HSCT. It wouldn’t have the good, the bad and the ugly about HSCT, only the good. That’s fine, as long as anyone joining the group is aware of that fact. Maybe that’s what all Facebook groups are like, since Facebook itself describes a world where only good things happen.
I seem to recall that a few years back, the MS Soc had to close down its Facebook page on CCSVI for exactly the reason suggested by Sewingchick. Anyone who did not agree that it was the answer to life, the universe and everything, the only cure for MS, and the best thing since the sliced loaf, got subjected to a torrent of abuse.
I wonder how many of the CCSVI fanatics are now HSCT fanatics.
Geoff
I posted this comment over a year ago and after doing a lot of research i am now on waiting list for russia.
I spoke to my neuro about hsct and she undrrstood y i wanted the treatment and said to me yes hsct halts the progression of ms. That for me tells me and all the research ive done papers i read tell me hsct works which neuro agreed-and i would rather have this treatment early than when more damage could potentially be done over the years.
I dnt worry about potential of death as theres that potential for all medical procedures but theres the proof that when preformed correctly(which russia do and the results are there) no deaths reported for ms patients going through this treatment. Its a procedure thats been preformed for years and years.
They are preforming this treatment in uk now and its only a matter of time before its more freely available.
everyone had their own opinions on this trestment and its up to individuals to make that decision on how they manage their ms. I just believe neuros are happy for you to plod along with conventional treatments that are safe and they know so much about however its not them living with ms so really they dnt care if u end up im wheelchair or worse.
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Nobody here is abusing anyone Geoff. We are debating HSCV with Sewingchick against and some for. We are not fanatics!?! We are supporting freedom of speech, including yours. I’m interested in others viewpoints for my own research and therefore asked about HSCV ie I invited comments.
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I’ll be interested in following your journey rosex…hopefully to full health.
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I am not against HSCT - absolutely not. What I am against is propaganda about HSCT being posted here or anywhere else. I think it’s important that people understand the facts about the treatments available and make their choices on these facts.
For example, rosex quotes her neuro as saying “yes hsct halts the progression of ms”. But that isn’t true. At most, HSCT was seen to halt the progression of MS in eight out of ten people who had it. That was in quite a small study - 99 people, only 63 of whom seem to have been in the long term follow-up. The authors of the paper mention that this does not reflect results in other studies of HSCT.
There have been many mentions on this thread about the success and safety of Russian HSCT treatment. Presumably these same people have seen reliable statistics on people who have had HSCT in Russia? Because I personally would be very nervous about going for such a high impact treatment in Russia, of all places, based on anecdotal evidence from a Facebook group.
I am also planning to post honestly about the effects of my own treatment, as several people who have had Lemtrada have done on here. I hope people who have HSCT will do the same. Links to properly documented statistics on Russian or other country’s HSCT outcomes would also be very welcome.
I take it for granted you’ll be posting honestly. You don’t need to say that and your views are welcome. We are all giving or reading points of view, experiences and things we’ve read, researched etc. and we can disagree or agree that’s fine. I want to hear all views. We all have a common enemy and that is our treacherous immune system that’s turned on it’s host. Let’s not turn on each other but give our views as we see them.
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lts good to ‘question’ - and not be taken in by anecdotal reports. lf l was a ‘newbie’ with my life ahead of me - l would be investigating all the possible ways of improving my health.
l joined the facebook group Biotin for Progressive MS - a year ago. And it is an eye-opener - really. As you can read about peoples experience in CCSVI and HSCT. As so many folk with MS have had both!!! - And yet are still willing to try Biotin - so yes neither treatment is the ‘holy grail’.
Take everything you read with a pinch of salt - as they say. BUT - we do need to be pro-active - l certainly have no confidence in our neuro’s.
One thing that did concern me was the amount of people with PPMS - in US and Aus who are on dmt’s. Several of them stopped the dmt when starting on Biotin - and were shocked at how better they felt straightaway - one chap - who had been on Tysabri for quite a few years - found he was able to walk better and felt more like he did before MS. This was before taking Biotin. We know neuros can make a lot of money from ‘big pharma’ companies - now it will be the lawyers who will be cashing in!! Such is life.
For us - who have been suffering with this disease for many years, and have been too disabled to carry on working, will not have the ‘means’ to pay for this HSCT. l see money can be raised by online contributions - like charities do.
lt is believed, by many, that MS is caused by an overactive immune system - which is similar to cancer. Our own bodies are fighting against us and not for us. So l can see why it is hoped that chemotherapy will wipe out the immune system and re-set it. l have yet to hear about anyone who has MS, who has been treated with chemotherapy for a previous cancer - as surely this would have also stopped the MS.
Keep an open mind - read all you can - listen to everyone’s experience and share your thoughts.
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Definitely going to take biotin (it’s good for your hair too lol). I’m already on 10000mg of vD and Bvits (will need to check dose)
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spacejacket - that’s exactly what prompted interest in HSCT for treating autoimmune diseases in the first place! It was noticed that MS patients who were treated for particular cancers with HSCT for the cancer, as has been done for decades, also appeared to have halted the progression of their MS. THE whole development of HSCT for autoimmune diseases stems back to those days, and has of course been adapted and refined since then.
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If you read my words carefully, Edingirl, you will see that my comments applied to the people on the CCSVI Facebook page.
However, if you read this thread from the beginning, you will see two instances of a personal attack having to be removed by the Mods.
If you also go back, doing a search on stem cells in this forum, you will find that I have always considered stem cells as offering the best hope for an effective treatment for MS.
If you also follow the abstract that whammell linked to, you will find that Biotin (as in the MedDay trial) comes out as twice as effective in lowering the participant’s EDSS rating. This brings up the vital point that if you take Biotin and have HSCT in Moscow - and then see an improvement - how do you know which one is responsible?
No reputable clinic would accept me for HSCT (I am much too old), so I will have to stick to Biotin (being careful to stop a few days before any blood test).
Geoff
Hi Edingirl
I notice that you’ve been a member of this forum for just over a fortnight. With the greatest respect, I think when you’ve been a member for a little longer, you’ll know who is debating issues appropriately and who is not. To start taking people to task over their perfectly reasonable comments, points of view and / or wording is a little bit premature when you have been a member for such a short time.
These issues brought up by Sewingchick and Doctor Geoff are perfectly valid, in no way would they be construed as argumentative or as attacking each other’s views. Both members are as you suggest, giving their views as they see them and are not “turning on each other”. In actual fact, both members are extremely good at doing their research and post valuable and cogent perspectives to the issues. To my knowledge, neither has ever crossed the line with regard to sensible and respectful debate.
Sue
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I understand all this stuff about HSCT much better since this thread has been going (again). It is a religion, isn’t it? The “HSCT is going to cure my MS” religion. Following on from the “Swank diet / best odds diet / Wahls diet / CCVSI (delete as appropriate) is going to cure my MS” religion. Like all religions, evidence is irrelevant to devotees, because it’s belief that counts. If you want to understand about HSCT, you would probably want to read this page, which was written after the BBC Panorama programme on HSCT:
http://multiple-sclerosis-research.blogspot.com/2016/02/clinicspeak-reflections-on-hsct-after.html
But just to warn the believers, you might want to stick with you fellow believers in your Facebook group, because there are facts rather than propaganda in this piece. Here’s a quote
“As with all good storytelling the BBC got the soft touches right, but … they failed to discuss the risks of HSCT and more importantly alternatives treatments available to neurologists to treat MS.”
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I love Dr Giovanonni. He tells it like it is. Warts, secondary auto immune disorders and all.
Sue
Sewingchick - you think HSCT is a religion?? Crikey. Have you actually read any of the published scientific papers? It really isn’t necessary to go by anecdotes to find out facts - just do the research. Do you really think eminent haematologists like Dr Kazmi at King’s College Hospital in London amongst others, would be treating people with HSCT without good scientific reason? I’m pretty sure that the team involved (there are many neurologists involved in the decision making, alongside Dr Kazmi) aren’t treating HSCT as a religion…
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