If HSCT is so safe, why haven’t I had it?

ms societyDo I believe in the HSCT (Autologous Haematopoietic Stem Cell Transplantation) as an effective therapy to fight multiple sclerosis?  Am I happy with the level of its side effects? Do I regard it as safe?

Yes, yes, and yes!

Those answers often lead to an obvious, and most certainly not unreasonable, question. Almost inevitably, people ask something along the lines of: “If you are so convinced that HSCT is a great treatment for MS, why haven’t you had it?”

The short answer is that I tried but was told, by specialists at one of the world’s top transplant centres, that the therapy wasn’t for me.

I’ll explain that in more detail later in this post but first I will tell you some of the reasoning behind my positive answers above.

gwen higgs

Gwren Higgs had PPMS and underwent HSCT in Moscow, She says it stopped progression and has seen improvements in some areas.

My first YES is because, after scientific trials, HSCT has been proved to be a very effective treatment for the disease and is now widely accepted as approved for use in our fight against MS. True, the best results have been for people with RRMS (relapsing MS) but some with progressive forms of the disease have reported excellent results.

Talking of the treatment being ‘widely accepted’, let me give you two examples. In the US, the medications and procedures used in HSCT are already approved by the FDA, while in the UK it is now available on the NHS (National Health Service). There, the transplantation therapy is provided free of charge to UK-resident MS patients by the NHS but they are first required to meet specific medical criteria.

Side effects some may experience

My second YES is based on the fact that all forms of treatments, like surgical operations and medications for any disease, have side effects which individual patients may or may not encounter. This is as true for the disease modifying drugs used to treat MS as it is for HSCT.

I will focus on side effects in more detail in another post, later this month.

James Coates had  SPMS and was given HSCT free on the NHS. He said: “I feel like HSCT has given me my life back.”

As far as it being safe is concerned, my third YES is emphatic, as long as it is being performed by specialists at one of the world’s foremost centres. If you are considering undergoing HSCT, please check out the credentials of any centre offering the treatment. In Europe such clinics should have JACIE accreditation. You can also talk to people who have had the therapy, just visit one or more of the many HSCT groups on Facebook.

I have seen some people raise concerns about this therapy and quote wildly inaccurate mortality rates, mainly because they are using either erroneous or outdated figures.

Let’s look at what the UK’s MS Society has to say about the matter. It says: “According to a European register, one or two in every 100 people (1.3%) having HSCT in clinical trials have died as a result of the treatment. But since 2005, the mortality rate has dropped to around 1 in 330 (0.3%).”

So, while some scaremongers falsely say 5% (5 in 100) can die, the true mortality rate today is just 0.3% (1 in 330). I could live with that. Can you?

And that brings us back to that question – why haven’t I had HSCT?

Well, in September 2016 I travelled to Russia for tests and assessment at the Moscow centre where the HSCT team is headed by Dr Denis Fedorenko.

Results explained

fedrenko

Dr Denis Fedorenkoko, his assistant Anastasia Panchenko. and me, during my visit to Moscow in 2016.

I underwent numerous tests and he found I had:

        • progressive MS
        • inactive lesions
        • MS that was not ‘highly active’

And other tests confirmed what I already knew, that I:

        • have atrial fibrillation (an irregular heartbeat)
        • had, at some point in the past, suffered a ‘silent’ heart attack (a heart attack I didn’t know about at the time)
        • have epilepsy that is totally controlled by medication. In fact, I had my last seizure in 1974, 46 years ago, but tests show I still have the condition

During my last full day in Moscow, Dr Fedorenko came to see me. We sat together in my private room. He explained the test results and said that he and his team had decided, sadly, not to proceed with HSCT in my case.

In reaching their decision, they had looked at the advantages the therapy would offer me and weighed those against possible disadvantages.

‘Dr F’, as he is affectionately known by those who have passed through his care, said that the key factors that had led to the team’s decision were my MS’s low activity (so fewer advantages) and the possible disadvantages posed by my heart condition.

Had the MS been highly active, the decision would have been different, he added.

And that is why I have not had HSCT – even though it is a therapy for MS that I believe in, and support, passionately.

There can be no change as, one of the medical criteria, that anyone choosing transplantation, is that they must be able to walk. Now, I cannot stand, let alone take a step, without support. I use a wheelchair all the time, even to get about indoors. And I have to rely on a hoist to transfer from bed to wheelchair, wheelchair to armchair or toilet, and back again.

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Spelling

Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre                             not center (except in names, Centers of Disease Control)                  Colour                              not color                                                                                                                      Diarrhoea                       not diarrhea                                                                                                  Haematology                not hematology                                                                                Haematopoietic          not hematopoietic

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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

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