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Where did your skin thickening start?

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26 replies to this topic

#21 Peggy


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Posted 01 April 2009 - 06:27 AM

Mine started with my ankles swelling to the size of basketballs and then when the swelling went down the skin on the top of my feet was as tight as it could be. I also had really, really tight skin of my hands to the point I could have been an hand model. Now that I'm on the cellcept the wrinkles have come back and the top of my hands can actually be pinched together to form a fold! That wasn't possible 9 months ago.

Warm hugs,


#22 Honey


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Posted 02 April 2009 - 04:53 PM

Hi, Peggy.

Boy! My feet are so tight that I can barely rotate my ankle. If I stand on my toes to reach for something.. WOW! What pain. And my hands are also tight, so tight that I cannot make a fist. I can barely touch my thumb to my fingers.

How long did your feet stay tight? Was it the medicine that made the difference?


#23 Mousey



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Posted 13 April 2009 - 11:09 AM


My husband's thickening started on his forearms. We noticed discoloration and then hardening. This has since spread to flat oval-like hard spots on his abdomen, thick-ball-like lumps in his chest then flat hardening on his thighs and now thick-ball-like lumps up the backs of his legs.

#24 Eos


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Posted 13 April 2009 - 03:23 PM

It reversed??? Really??

#25 Shelley Ensz

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Posted 13 April 2009 - 03:47 PM

Hi Eos,

Yes, the natural course of systemic scleroderma is for the skin to tighten and then, sometimes, go back to normal, either in whole or in part. It doesn't happen to everyone, but it happens just often enough to mess up every small scale clinical trial for scleroderma. Regardless of what is being tested, most doctors and patients think we are on the verge of a cure until it gets to large phase 3 trials. When they unblind the trial to discover the test results, they are generally astounded to find that the patients who received the placebo improved just as much as those who received the medication they were testing.

So, there is always hope for all of us! Not everyone with systemic sclerosis develops skin tightening and sometimes it even reverses, either all by itself or along with treatments. For example, Razz' skin tightening lessened after her stem cell transplant.
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.

#26 beanie


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Posted 22 April 2009 - 01:19 AM

Mine was my face and hands. Interesting, someone mentioned skin not tanning in the sun on her child. My skin on my face is really tight and during the summer, it just doesn't tan. The rest of my body will be brown and my face is pale. I use a self tanner on my face in the summer to help even out the difference.


#27 doodlehead



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Posted 01 May 2009 - 05:24 AM

I haven't been diagnosed with scleroderma. My rheumatologist classified it as undifferentiated connective tissue disease (UCTD) right now but lab and physical look like sclero (some things lean to lupus also, could this be overlap?).

I have the red spots on face, chest, arms and now they are starting to show up on my belly. I have skin thickening right below my right eye and at the corner (next to tear duct). I have had many other symptoms for years (joint pain, fatigue, unexplained weight loss, gynecological issues (premature ovarian failure, early menopause, etc.). When I had surgery (4 times) all of my scars became extremely fibrous. Any time I get even a small cut it takes forever to heal and then becomes thickened. I'm not hoping for sclero but it would be nice to know what I'm dealing with. I'm new to this website and am finding it extremely helpful. At least now I know I'm not the only one that has been searching for years for a explanation as to what's been going on (other than hearing we can't find anything physically wrong, must be in your head).

Thanks guys! :rolleyes: