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Help For Thickened Collagen

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#1 Jemnibabe



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Posted 26 October 2006 - 01:19 PM

Hello everyone. I am new here but everyone seems so friendly and helpful. I am hoping someone can help with my problem. I have tightening skin, collagen thickening and hardening and my thighs and calves and even up my back somewhat, are becoming so stiff that it's difficult to walk far without extreme back pain. Does anyone have this problem or are you aware of any type of treatments to perhaps soften the collagen and give me back some flexibility? Stretches are almost all I can do in the form of exercise. I would be so grateful for any help or even ideas as this is beginning to really affect my mobility. Hope everyone is having a pleasant and peaceful evening. Judy

#2 janey


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Posted 26 October 2006 - 04:31 PM

Welcome to the forum! I'm sorry that you are here due to your having scleroderma and continuing problems with your skin hardening, but I think you will find this is a great place for support and information.

What is your rheumatologist doing to help try to slow the progression of skin hardening? Are you on any type of immunosuppresants? As scleroderma patients we are collagen producing machines, so rather than treat the hard skin, the method is usually to slow down the collagen production. I would discuss this with your rheumatologist. In the meantime, I am providing a link to the ISN page on dry skin and some of the recommended treatments. I hope you find this helpful.

Again welcome. Keep stretching. That sure has helped me.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Dee


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Posted 26 October 2006 - 06:14 PM


I'm so sorry you are struggling with mobility problems. That is a challenge that affects many areas of your life. Janey is right. I don't know if an immunosuppresant would be right for you, but talk with your rheumatologist.

I've not experienced the amount of skin thickening you have. At first my fingers were really swollen and then the skin hardened. My rheumatologist put me on Plaquenil, an immunosuppresant drug that helps stop the progression of the disease. My fingers softened and it really helped with pain and fatigue. I also lost a lot of dry skin on my feet. I believe it is the Plaquenil. My sister who has lupus and takes Plaquenil, also lost a lot of dry skin off her feet. We both found a lot of dead skin came off by just rubbing our heels. But I don't know if this is for you . . .

My rheumatologist strongly encourages me to do water aerobics and stretch to maintain flexibility. Our YMCA offers a course on water aerobics especially for people with arthritis. It is very easy, inexpensive and helped me regain mobility and decrease pain. Also sometimes hospitals offer water classes. Perhaps your rheumatologist would prescribe water physical therapy? My insurance covered it.

I'm so glad you found this group. You will find a lot of support and information. Be encouraged. There is hope!



#4 Heidi


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Posted 27 October 2006 - 03:46 AM

Hi Judy,

I am so glad you joined us over here. I am not sure that everyone here read your first post on the other message board explaining that you have "Scleredema" as opposed to "Scleroderma". I had never heard of "Scleredema" before you posted your message on the other board. What medications are you taking? What does the rheumatologist suggest for slowing the collagen down? I do hope you can find some relief.

Warm wishes,

#5 Shelley Ensz

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Posted 27 October 2006 - 04:44 AM

Hi Judy,

Welcome to Sclero Forums!

I'm sorry to hear you have scleredema. We always have to be careful on our main website to not "correct" scleredema to scleroderma, since everyone always seems to think it is just a typo.

Our section on scleredema is:
It would be nice if you would submit your patient story to our main site, as we only have one story on scleredema so far, as it is very rare.

You'll need to work closely with your medical team, and keep in mind that treatment and care for scleredema can be different than that for scleroderma. But our forum is for people who are interested in scleroderma and related illnesses and symptoms, so you are definitely in the right place.
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.