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Best treatment for scleroderma

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#1 Chimama



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Posted 18 October 2010 - 07:32 AM

I see so many of you on different medications, in regards to disease modifying drugs. I see things like Plaquinal, methotrexete, even stem cell transplant and chemo. For the diffuse form I know it's important to hit it early to try to stop the damage. But with what? Those who have diffuse, how do you choose between the usual medications or going for a clinical trial or to extremes such as traveling out of the country to where newer treatments are.

I am wondering if travel and money were no issue, where would someone go for the best treatment and what might that treatment be?

I have seen some positive results from stemcell transplants as well as chemo but is that the best we have? Thanks

#2 Jeannie McClelland

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Posted 18 October 2010 - 07:58 AM

Hi Chimama,

That's an interesting series of questions.

Part of the answer is easy - our doctors evaluate our condition and prescribe the treatment they think most suitable. At that point we have the option to accept or refuse the treatment, whatever it might be. I think it is our responsibility to do our own research into what is available generally and what is offered to us personally and to ask questions of our doctors.

As far as traveling to obtain treatment unavailable where we live, I think my own answer would be mostly no. I would travel to get a second opinion, but not to have treatment that would require a long stay elsewhere. For me, that would be a big burden on my family and emotionally distressing to me. I'm fortunate enough to live where most of what is available is accessible without travel, so I guess in my case it is a moot question. I have had to think about how much moving to a lower altitude/more humid climate/warmer climate would benefit me, but at 63 and having a tremendous support system and family here, I'd really hate to move.

Now, about "is that the best available to us" - well, since the symptoms can be treated, but not the disease itself, I guess the answer is yes, for now that is the best. Scleroderma is finally getting a lot of attention and great strides are being made in understanding the disease. I feel sure better treatments are just around the corner.

Best wishes,
Jeannie McClelland
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#3 janey


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Posted 18 October 2010 - 12:38 PM

Jeannie just about said it all so I'll just add a little to what she has already said. My sclero came on very, very fast, and luckily, I was diagnosed quickly. My rheumatologist put me on the standard first line treatment at the time. It was methotrexate (low dose chemo or immunosuppressant) and low dose prednisone. It did the trick and slowed the disease progression very quickly. In the 7 years, I have had to switch drugs for various reasons, but have never had to really consider something as aggressive as stem cells. Usually doctors, and definitely insurance companies, don't even consider something like stem cell transplant (SCT) unless other avenues have been tried and failed. Personally speaking, if my condition had continue to progress as it did in the beginning even after having been put on methotrexate, I would probably have pursued SCT, but, thank goodness, I didn't have to.

As Jeannie mentioned, there is so much to consider with treatment, lifestyle, and things like "where to live". I too live a mile high and my lungs don't really like it. They like sea level so much better, but I manage where I am and, like Jeannie, absolutely love my life here. So we've made the choice to make it work. Lots of decisions come with any chronic illness. Just be sure to explore your options so you can make the decision that is best for you.
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#4 Joelf


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Posted 19 October 2010 - 02:16 AM

Hi Chimama

Like Janey my lung fibrosis progressed quickly, but I had been suffering Sclero symptoms for possibly 18 months before that but just hadn't realised what was happening. I was incredibly fortunate in that I was referred to a top lung specialist hospital and once there my feet didn't touch the ground!! After just about every lung test known to man they put me on a six monthly IV course of Cyclophosphamide which attacked the inflammation so aggressively that I had a really good result at the end of it. But the same treatment doesn't necessarily work as well for everyone; I was very fit so noticed very quickly that my breathing was not as it should be and therefore the inflammation was tackled before it was able to get a strong hold over my lungs.

I think that every person responds to treatment differently and as Jeannie and Janey have said lifestyle and climate have a lot to do with it. Also although I received fantastic treatment from the British National Health Service, sadly I have friends who have not fared so well in other parts of the UK. Even though I do have a tendency to be a bit of a control freak, :rolleyes: I have such confidence in my consultants that whatever they say, I follow strictly; if they say "Jump", I say "How high?" :lol: :lol:

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#5 Amanda Thorpe

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Posted 20 October 2010 - 05:39 AM

Hello Chimama

Interesting question, as already said it's a case of treating symptoms as they come along as well as trying to suppress the immune system being as scleroderma is an auto immune disease. With medication it's always a case of side effects vs benefits, personally I don't think I'd ever consider a stem cell transplant but that's just me.

Take care
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#6 debonair susie

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Posted 25 October 2010 - 04:40 AM

Hi Chimama,

I would like to welcome you to our Scleroderma Family, where we hope that you will feel as comfortable as we do...here!

As you have probably already surmised, we have folks from all over the world who also have health issues. The seeking of support, as well as melding of experiences helps all of us become (better) advocates over our troublesome health.

Keep us posted and hope you post often!
Special Hugs,

Susie Kraft
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#7 Shelley Ensz

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Posted 26 October 2010 - 11:31 AM

Hi Chimama,

Welcome to Sclero Forums!

I suppose my tip would be that instead of pursuing a single treatment, it would be just as important, perhaps lots more so, to focus on selecting the best scleroderma expert that you can manage to see. The experts at the major centers have all the treatments available, or will refer you to centers that do, in the event that they don't offer one they think is best for you. Having a knowledgeable doctor to advise you throughout the entire course of the disease is more important, overall, than any single treatment approach.

Also, if a scleroderma expert recommends no treatment at all, that is a perfectly acceptable (and sometimes very wise) treatment plan, but advice for treatments will vary depending on the stage of the disease and complications. It can be good to save the 'big guns' for later (or hopefully, never). Sometimes the illness just isn't all that aggressive or progressive. Often, just treating symptoms as they arise will work. Sometimes the situation is really severe and major treatments need to at least be considered, such as stem cell transplants. But nearly everything for scleroderma treatment is experimental, meaning, it really might not work, it might even cause an earlier death, and so in some cases the treatment(s) can be worse than the disease.

Given that, I'd first find a doctor I could trust, and then stick with them, through thick and thin, for the best long term results.
Warm Hugs,

Shelley Ensz
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#8 Sweet


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Posted 26 October 2010 - 03:18 PM

Hi Chimama,

Please let me add my warm welcome! :flowers:
Warm and gentle hugs,

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