Last reply 1 month ago
HSCT or DMT

Hi everyone
My head is spinning so need help.
I was dx Nov 18 and am still waiting for a dmt on the NHS. I have been offered any drug I want but been told to basically decide for myself! I am going for a Ocrevus talk I a couple of weeks but also interested in Clad.
I have booked to go for HSCT in Russia in July as I decided to hit it hard very quickly but now I’m starting to doubt my decision.
Not really sure what I want from this post as I know everyone’s experience is different but I really am terrified of all of the options and have little faith in my ms team 😥

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stumbler
3 months ago

@debz , I’m not surprised that your head is spinning. It’s now getting on for 6 months following your diagnosis and you’re no further forward than you were then.

Have you had an introductory chat with your MS Nurse? They should be driving your DMT choice.

All MS treatments are serious medicines, which befits the serious possibilities of MS. But, the risks associated with DMTs are known risks and can be managed accordingly.

However, Stem Cell Therapy is still in its infancy. It’s a very costly procedure, highly aggressive and can have serious repercussions. You must be aware of the BBC journalist, who went for HSCT in Mexico :-

https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis


debz
3 months ago

Thanks stumbler
I feel totally on my own to work my way through the risk/benefits of each option. My ms team support me going for HSCT and are all geared up to look after me when I return but it’s a big decision!
I want to get ms kicked into the grass so only 3 choice – lem, clad or hsct. Lem in now unavailable 1st line, clad is not high efficacy so I don’t see any other choice but hsct.
I need someone to make some decisions with/for me!
I have my 3rd head and full spine MRI tomorrow so will know how things are progressing by the end of the week and maybe that will help me choose x


stumbler
3 months ago

@debz , there’s one DMT that is conspicuous by its absence, Ocrevus. This is also considered high efficacy on a par with Lemtrada.

Your MS team will help you with your decision, but it will be yours to make.

Can I assume that you have performed your due diligence on the Russian HSCT option. I’m aware that there is a good operation available there, but I’m also aware that there are some suspect ones too, Swiss Medica to name but one.


debz
3 months ago

Yes it’s missing because if barts ms blog is to be believed, it may be subject to s section 20 very soon due to new infection risk! I don’t really want a maintenance drug tbh, I’d prefer an IRT but I am going to the talk at the ms centre so we will see.
As for Russia, I am booked in with Dr Fedorenko at AA maximov which is one of the best international centres for hsct. I really do not want to go through with it, just feel out of options! X


dominics
3 months ago

@debz – Whilst I am with you in principle about hit it hard, hit it fast (It isn’t a secret that I’d have HSCT in a flash if I had the money), the idea of getting it abroad concerns me.

It was a ‘threat’ I made to my treatment team to indicate my level of frustration and willingness to take risks that I feel are commensurate with the effects that MS can have.

It got their attention and I am now on Ocrelizumab. Nonetheless, they did talk me out of having HSCT abroad. The main argument against is – partly British vanity? – is that no-one else is as good at it and the potential for complications developing upon return home being much more challenging to treat.

I am still not sure. We only hear the great stories. In the profession, they see the ones that went wrong. Advocates make no mention of those and I think it would make a decent study to follow two groups to see how each fared during, after and longer-term.

I still toy with the idea. There is nothing to stop you going to check it out. If you aren’t happy then you can exit at any time.

One way to do it may be to tell your team that you are going – a non-negotiable thing – and ask them to tell you what questions you should be asking, what things you need to look for and how are any complications dealt with in the UK if you have them?

Really keen to hear how things go.

Dom


debz
3 months ago

Thanks Dom
It’s so very tempting especially when neuros like Prof G are now supporting it.
One of my neuros is very supportive, says he would probably do the same if he was me. My nurse is now really supportive too but i haven’t dared mention it to my other neuro!

I did look at having it privately in London but you need to get worse before they’ll consider it plus Russia has a much better safety profile than the UK!
I need to decide something very quickly so will keep you posted

Deb


stumbler
3 months ago

@debz , whilst you’ve been unlucky to have been dealt the MS card, you are very fortunate that you have a full range of options available to you.

Good luck with whatever you decide.


dominics
3 months ago

@debz – London – more importantly than worse is having £80k or thereabouts. A friend had it done recently and is recuperating at home. Nearly ready to resume work.

Luckily for them, a private benefactor paid as a result of their employer approaching said benefactor.

If your consultant supports you then that is great.

Bon chance,

Dominic


juliam58
1 month ago

HSCT is the nearest thing to a cure!
If you want to have it privately in London then it would be best to see Dr Kazmi at London Bridge ( or even chat to him about Mexico or Russia which is cheaper) I had my treatment there March 18 but now I just see him on the NHS so no more bills. It is a very gruelling treatment but I have always thought of it as short term pain, long term gain. I have had various complications since treatment, mainly due to EBV levels flaring up ( most people don’t have that problem though) but recent MRIS have shown I am stable which is all I wanted. I still think it’s the best thing I could have done with success rates in stopping progression of around 80% .


dabble58
1 month ago

HSCT hasn’t been put on the front line here in Canada. I’ve seen the results of the trials (Dr. Freedman did one of the original studies here in Canada) – seems miraculous but if you have your own immune system killed before reinstalling the stem cells, there are a lot of risks. EBV is one of them, plus you need to get all your vaccines again…and for me, the thought of activating my familial eagerness to create cancer was enough to hold me off.
Plus my MS seems to be very mild. I’ve been on Copaxone for 10 years now and have progressed very slowly…I can’t work, true, due to fatigue and other issues, but I’m over 60 now anyway and quite happy to have an excuse and adisability pension…

My advice is to get clear info about how serious the MS is, how quickly it is moving. Often you can do with one of the earlier treatments with less or no side effects. You may not need to take the ones that cause all the trouble…just a thought…


chezy17
1 month ago

Hey. I’m on Cladribine and that has a pretty good success rate from what I can gather, the idea of hitting it hard right at the start with all the side affects is something I don’t really want to do. Yes I have 3 more lesions from the last 3 years but they haven’t caused any damage and I think it’s because I switched meds and caught the flu that I relapsed anyways. No-one knows how it will progress, I guess the idea is that you enjoy life whilst you can cos you could get hit by a bus tomorrow!
Good luck with whatever you decide 😊

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