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3 to 5 years then some improvements


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#1 Lucy

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Posted 09 June 2008 - 03:39 PM

My doctor has indicated to me that the type of scleroderma I have is Diffuse. I don't have any organ involvement, but has been very rapid/aggressive and currently 90% of my skin is involved and underlying connective tissue, will continue to get worse for 3 to 5 years then will level out and will get "some" improvements.

 

I have tried to find information of this "leveling out and then some improvements" on the internet and here on this site. But I have not been able to find anything.

 

Does anyone have any suggestions were I could look? Or have any knowledge about this?

 

Thanks.


Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#2 Shelley Ensz

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Posted 09 June 2008 - 04:33 PM

Hi Lucy,

I'm sorry you have diffuse scleroderma and that it has been rapid/aggressive.

As I understand it, and keep in mind I have no medical training, scleroderma tends to follow a "waxing and waning" course in many people. That is, it gets worse for a spell and then lets up, or even improves. I think the doctors call it waxing and waning while us patients call it a rollercoaster ride, one where you just really don't know what to expect next.

There is no "typical" course of the disease and it is different for everyone. You can get some general ideas from reading diffuse scleroderma patient stories on our main site, Plus there is statistical information in our Prognosis and Mortality section.

Very generally speaking, the first few years are usually the worst, and even without treatment, you may begin to experience a leveling off or at least slower worsening after that. The best thing you can possibly do is to consult a scleroderma expert, as early in the disease as possible, for the best possible treatment program.


Warm Hugs,

Shelley Ensz
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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.

#3 janey

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Posted 09 June 2008 - 05:52 PM

Lucy,
I was told the same by my rheumatologist and have read such a few times. Here's some information I found for another thread. I have no medical training, so following is just some stuff I found on this site and other reliable sites:

I found the following statement on MedicineNet.com - Prognosis.

"Recent data indicates that the critical period of organ risk is generally within the first three years of skin involvement. This means that patients can be reassured that their risk of organ-threatening complications is significantly less after three years of having skin symptoms." (reference from 2003)

You can get even more information from our "[url="http://www.sclero.org/scleroderma/a-to-z.html%5DWhat is Scleroderma?%5B/url%5D" page.

For me, it was one thing after another during the first 4 years, but now in year five things have definitely started to settle down. The last report from the rheumatologist stated that my disease was stable. My pulmonologist agrees and says it's even showing some signs of improvement. I'll take it.

There are several treatments out there that have helped to slow down the progression, so please discuss any and all options with your doctor. Don't accept "that it's only going to get worse". Ask your doctors "how can we keep it from getting worse?"


Janey Willis
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International Scleroderma Network (ISN)

#4 Sweet

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Posted 10 June 2008 - 05:43 AM

Lucy,

I'm sorry you are going through the worries of all of this. Shelley and Janey provided such great information. I hope it is helpful to you. I read it too and it was helpful to me!

Shelley and Janey, you two are amazing, you rock when it comes to finding the right stuff!!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Lucy

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Posted 11 June 2008 - 09:30 AM

Thanks for the replies Shelley, Janey and Sweet I had no idea what to think. I have kept waiting to wake up everyday and be able to move again - have it 50% gone. I knew it was not realistic, but that was my brain.

 

Don't you think it is funny there is not a lot of info on this part of the disease? It is such a doom and gloom disease you think some of the positive would follow along side all of the bad to help us through those dark nights.

 

Thanks again.


Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05