Myriam

Has anyone tried Scleroderma Stem Cell Transplant treatment?

3 posts in this topic

My name is Myriam and I was wondering if anyone out there has tried the Scleroderma Stem Cell transplant treatment?  I've been researching it now for about 9 months.  I understand it's available in Northwestern Memorial Hospital in Chicago, Illinois, under a Dr. Richard Burt but they can't confirm their 80% success rate.  I understand they take out your stem cells, store them, wipe out your old immune system with intense chemotherapy, then place your stem cells back.  I understand there's a time period between when they wipe out your old immune system and when your new one comes in that you've got no immune system.  I was told that during this time, if one little bacteria hits you, you die.  They try to be as careful as possible, but still one in ten die.  Even after your new immune system comes in, you're still immunocompromised for a while, so you still have to virtually remain sterile.

 

Another brand new treatment is called Riociguat.  Is anyone trying it?  How's it going?

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Hi Myriam,

 

Welcome to Sclero Forums. Your scleroderma expert can provide the best advice regarding stem cell transplants, and whether or not you are a good candidate for one. As you pointed out, they are very serious indeed and pose a lot of risk for scleroderma patients, and very few people with scleroderma qualify for them.

 

Riociquat is a medication just for pulmonary hypertension. There are a variety of medications for pulmonary hypertension.  It's not a treatment for scleroderma, per se, at least, that's my understanding right now.  It is in our section on our main site for Scleroderma Treatments and Clinical Trials, along with many other treatments.

 

Many of us are on a treatment plan of watchful waiting and treatment of symptoms as they arise. The real key is to be under the care of a scleroderma expert, as they are able to tailor the best approach for each patient.  The illness is so unique for everyone that there is no one-size-fits-all treatment plan -- not even the stem cell transplants fit that bill. It is a constant careful weighing of strategies because very often, the treatments can be worse than the disease.  So in comparison, sometimes living with the disease is not as bad as aggressively fighting it.  But then again, sometimes the illness is more aggressive and the "big guns" are called for.

 

Anyway, welcome to the forums and I hope you settle on an approach for your own care that you find both bearable and sustainable. 

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Myriam,

 

Welcome to these forums!

 

We have recently had another thread on Stem Cell transplants and I've also included a link to our medical page on Stem Cell Transplantation, both of which I hope you'll find helpful and informative.

 

As stated previously, I understand that this is not a procedure to be entered into lightly and as Shelley has advised, sometimes a treatment of alleviating the symptoms as much as possible and close monitoring by a Scleroderma specialist can be as effective as a more radical treatment such as stem cell transplantation, especially in terms of the side effects.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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