Scleroderma & Raynaud's UK (SRUK)
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Stem Cell Transplant

I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would it be the cure we all are looking for?

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Hello AMDP - I saw that news item too and pondered the same question you have come up with. It all sounds quite feasible doesn't it. I guess one day they will get round to us and will probably attend to the younger ones first. We can but live in hope.

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I suspect you may be right but I have sent the article to Prof Denton to see what he thinks. You never know, we might get lucky. The treatment sounds quite gruelling though. Ax

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Hi,

Yes, this treatment is an option for Scleroderma patients as well - it’s kind of a last resort option. About 2 yrs ago, at the SRUK annual conference in London, I listened to the inspirational story of a young lady suffering from diffuse Ssc who had undergone such treatment in the US. At the time, such treatment wasn’t available in the UK but I believe that may have changed since then.

Would be interesting to heard Dr Denton’s views...

See below from 2016 conference

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And this is a short video of the lady I wrote about (Katrina Brown)

m.youtube.com/watch?list=PL...

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Many thanks, all very interesting.

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They actually do perform the procedure on Scleroderma patients in the uk. But The Royal Free haven’t done many and like Tanya said it’s performed on patients where it’s their last resort. Also they tend not to do it on patients with heart involvement due to the high amount of chemotherapy and the heart not coping. Another thing with this procedure for us is there is always a risk of the disease starting again. It could begin a month later to years later there’s no way of knowing if it is the complete cure. This was coming from Dr Ong who works with Prof Denton when it was being considered for myself as an option.

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Thanks ai much for your reply Ax

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My cousin in America has had it done and it works. She is cured now, but it is not easy.

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Wow , did she have raynauds? What was cured ? My finace was just diagnosed with raynauds , and we’re from Illinois , he works in the cold. Now he’s u able to do his job and we’re trying to figure out what we need to do to get him better. I will tell everyone here he did take an Epsom salt bath and it helped him tremendously we even thought we almost cured it, but few days later symptoms came back, so we took another bath and he felt great again . I guess Epsom salt bath will help raynauds but u need to continually do it two three times a week.

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Which proves that it will have different effects in each person so proves no guarantee. So you would have to weigh up the risks which is why I think they are being more cautious about the way the treatment is being used on our disease in the uk. But I know from my own experience my consultant at The Royal had no problem talking about it. I’m sure it’s something that will crop up at The Royal Free Family Day in May

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a couple of years ago I went to the scleroderma conference held at Bath and they talked about this. At that time they only did it for patients who were not far from death as the success rate was 50/50.

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Many thanks 50/50 are a long way from great odds. Ax

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There are Facebook groups for HSCT. Chicago is the main one in the US. There is a HSCT group for Scleroderma. I am in the US but have heard of Prof Denton. I think UK has a higher death rate because they don’t follow the heart friendly protocol of Chicago. And it’s only in England, not Scotland. But I am no expert. That’s just from what I recall.

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Many thanks Ax

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I had read someone on here, healthunlock, who had the treatment & was in remission for 3 years.

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HEY AMDP

I have also discussed this with professor denton unfortunately this wasn’t an option for my husband as he has had his condition for many years. I believe it is an option on newly diagnosed patients, and this is if the doctors think it is worth you going through it as it is a very strong/dangerous treatment, I have seen many succuss story’s but everyone’s condition is different. Would be interesting to see what professor says in your case, all the best xxxx

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Hi this can be done. If you look up the tube fed wife on Facebook she went through this treatment in Chicago but it's very painful and dangerous so is basically a last resort treatment. She is currently in remission but if you read through her page or blog it was really harrowing. I hope this treatment will become available to scleroderma and lupus patients but it concerns me that the way the NHS is going it is a very expensive treatment as well x

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Many thanks for your reply Ax

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Hi,

I was diagnosed with Systemic Scleroderma in August 2017, the secondary Raynaulds happened about 2 months later. The illness has been so aggressive with the medication of Mycrophenolate not stopping the advance.

I was recommended for "Stem Cell Treatment" at Sheffield hospital by my consultant who is marvellous and informed of all the risks involved. I decided I had nothing to lose as I want my life back. I will be "64" this April and have been very active throughout my whole life.

I attended a day and a half of intensive tests to make sure I was medically fit for the treatment. I was lucky enough to pass all these tests.I started treatment this Monday (26th March). I'm very excited as I've had no life since August last year.

I'm in hospital for 12 days to begin with having a break of 3/4 weeks before I go into an isolation room for a month.

All I can say is be positive and if you get the chance and are lucky enough to be accepted take it by both hands.

I have no idea what my future entails but that is the least of my worries! I WILL beat this horrible disease!!!!

xxx to Everyone

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