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dimarzio

Stem Cell Transplant

8 posts in this topic

A little bit of research has thrown up stem cell transplant as a solution in SSc cases but information is somewhat fragmented, the risks are great so maybe only advisable in the most serious cases, but leaving it until there are severe internal organ complications can mean individuals are considered to be too sick for the treatment.

 

Has anyone on the forums had a SCT or researched it and able to write an understandable synopsis on the pros and cons.

 

What are the likely criteria and could it be considered for milder cases before the serious complications arise?

 

I'm not sure whether this is available in the UK or whether the NHS would consider funding it, most of the research I have read comes from trials in the USA.

 

I know this treatment is expensive, but I am in a position to fund it and travel anywhere in the world to get it if it is considered a viable solution.  It's more a question of whether one waits until it is too late or considers it early and is then rejected on the grounds of risks exceeding potential benefits.

 

Any discussion or comment would be gratefully received.

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Hi,

 

The only case I know about was a young lady in her twenties (I think - quite young anyway) whose skin was so badly affected that it split if she moved.   She was virtually full-time in hospital here in NZ and told there was nothing that could be done to ease her problems.

 

Her sister who lives in Australia got herself on the job and found a Doctor in Australia who was willing to try a stem cell transplant.

 

It was hugely expensive, considering the need to move her to another country, but they funded it through the on-line donation sites and a special fund that is available here to be applied to for extreme cases.

 

The outcome has been miraculous, you would not know she had been so ill.

 

The disease was so extreme in this case that the recovery has seemed to be extreme as well.  I personally haven't heard of anybody else who was so much in need of treatment.   I have thought about this and wondered if I had been diagnosed earlier, would I have benefited from such intervention.   As I have grown older my disease has settled somewhat although the internal effects are still worrying but when I am on top of things I am better than I have been for years.   Who knows what is the best route to follow.

 

Best wishes

Judyt

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Hi Dimarzio,

 

I have absolutely no experience of Stem Cell Transplantation, but would suggest that it really is quite an extreme measure, not to be entered into lightly, without sufficient research into the possible pitfalls. My understanding is that unless you are terminal/nearly terminal it's not a consideration because of the huge risks. I've no idea whether it would be available on the NHS, but I would think it unlikely and I can't imagine that they would be willing to fund it, bearing in mind the dire straits that they're in regarding their cash flow problems.

 

We do have a very interesting thread about Stem Cell Transplant which does have a lively discussion on the subject and I hope you'll find it helpful and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Dimarzio

 

IVIg Treatment in Systemic Sclerosis.

 

Above is a website for a new study concerning IV Ig infusions and scleroderma.  Gareth has internal issues from UCTD, has been on Plaquenil for 10 years, and also has immune deficiencies that require the IV Ig infusions every 4 weeks.  When I discussed other treatment options for his UCTD ((following his neck surgery) his Rheumatologist said there was nothing available  for him, as he is already getting the IV Ig infusions.  She was the first to tell me about IV Ig for scleroderma.  It's not cheap, but you can try discussing it with your doctor.

 

Take care, everyone.

Margaret

Mom to Gareth, 28 years old, DS/ASD

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Thanks for the replies.  I've skimmed the links but will read more thoroughly when time allows.

 

Margaret - this is the first I've heard about IVIG treatment, would you care to elaborate as it seems very interesting.

 

Thanks

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Hi Dimarzio,

 

We have had several of our members who have undergone IVIg treatment, with some success and I've included a link to our medical page on the subject to give you some more information.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Dimarzio,

 

I can't really been more specific since I don't know much about it. Gareth's case is unique in that he started the IV Ig treatments (5 years ago) because of his immune deficiencies, not because of the UCTD, for which he's been on Plaquenil for 10 years. I have read that autoimmune diseases can cause immune deficiencies, but he has always been a very sickly kid and spent many a days in hospitals throughout his life, so I am assuming he had always had the ID and the UCTD came later, at age 18.

 

I asked his Rheumatologist about his medication a year ago, when the surgeon had such a hard time repairing his neck vertebrae due to the fibrosis around his trachea, esophagus, and carotid artery. She was the one who said that they were using IV Ig infusions for Scleroderma. I have no way of knowing if the infusions have slowed/stop the progression of his disease since he has never had a full body scan to show the extend of initial damage; does that make sense? I do know that his esophagus has gotten worse over the years; it's now looks like a contorted, curly straw due to the hardening and he needs it stretched every 12-18 months.

 

I wish I could be helpful.....sorry.

 

Take care, Everyone.

Margaret

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HSCT is the ONLY treatment to date that has shown to put the disease into remission.  It is a somewhat risky procedure that is only being run under clinical trials in the US, particuarly under Dr. Richard Burt at Northwestern Memorial in Chicago.  I went for an evaluation, but he said my disease is currently stable under my treatment, but it if progresses I am welcome to come back.  You must be "sick enough" but not "too sick"  there is extensive testing done for your heart to assess if it strong enough. 

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