Where did your skin thickening start?
Posted 17 March 2009 - 12:29 PM
Posted 17 March 2009 - 02:55 PM
Where did yours start, KD?
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Posted 17 March 2009 - 06:27 PM
My skin thickening started in my feet. Traveled up my lower legs to my knees. Don't know where else it is going to go. Diagnosed January 2009.
Posted 17 March 2009 - 10:31 PM
My skin has been thickening in my fingers, the undersides. This started at least two months ago. Is this typical for the fingers, or is it the topsides? Also, how long does the thickening last?
This is a great question! I have been curious, also.
Posted 18 March 2009 - 09:03 AM
Posted 18 March 2009 - 10:29 AM
My skin thickening started as a small patch on my right shin that sat there for about 3 years then started growing, appeared on the left shin then down to the ankles and both feet. It appeared on the wrists and forarms next, midriff, hands,thighs, upper arms and shoulders. I am told this is atypical as it usually starts with the hands.
I think the thickening lasts during the active phase which I think is 3-5 years?
The interesting thing about sclero is how everyone can be so different therefore one person's progression may be totally different from anothers.
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Posted 19 March 2009 - 01:04 AM
I was told by my rheumatologist that while I have many symptoms of scleroderma, it can't be sclero because my fingers aren't getting thickened skin. He discounts the fact that I was told on two different occasions that the skin on my arms near my wrists is thick and hard to get a needle through. He also couldn't see that my face seems to be tightening up along the hairline mostly.
I don't have significant skin involvement as of yet. I mostly have trouble with the esophagus, fatigue, dryness, and lately joint pain. My upper lip is less flexible than it used to be. It is especially hard to sneer . The times when you would like to sneer come up infrequently, but when they do, it is a great loss . I also noticed that if I try whistling, I have a little trouble puckering up until I stretch out my lips.
I also noticed that the skin on my wrists and feet is getting smoother and shinier. One more week until I see a new possible primary care doctor. Then one more week after that until the GI specialist at the University. It will be interesting to see what they think of all this.
Posted 19 March 2009 - 02:03 PM
I have fairly severe diffuse, so don't think yours will necessarily follow the same route. Mine started as swelling in my hands shortly followed by thickening of the hands and arms. My rings no longer fit. Then the skin on my arms became 'salt and pepper' discolored- people started asking me where I got my tan. As the thickening spread, that area of my body would have small black dots all over it, called hyperpigmentation, along with terrible itching. I could no longer make a fist or hold pencils, or open jars or bottles. Then it spread up the arms, started in the feet and up the legs, then to the abdomen and face. My facial skin is so tight that my mouth is a small little 'o' and I can neither raise my eyebrows or frown, or open my eyes wide. So I have to say 'I'm really surprised!' or 'I'm really angry!' since my face no longer shows my emotions. My hairdresser says it's like working on a plastic doll, my scalp is so tight. Just now my shoulders and upper back have begun the itching and discoloration, and I am four years since the start of symptoms. At my most recent rheumatologist visit though he seems to feel the skin is getting softer, hooray!, which seems to follow the conventional wisdom of 3-5 years of thickening followed my a relaxation period, which I am looking forward to.
I moisturize like a fiend and baby my fingers -and toes- in particular because ulcers are nasty, painful, and to be avoided at all costs if your fingers get stiff and hard. Good luck dear and let us know how you are doing.
Love, Mary in Philly
Posted 19 March 2009 - 03:58 PM
dx Jan 2006
Posted 21 March 2009 - 08:56 AM
I have two "flat" right below my notrils and out a bit, they have grown over the last several months........
I am not ready for the skin involvement, but then again not ready for sclero either but handling it well I would venture to say. I had not put this together yet on my last visit, but remember rheumatologist mentioning mouth/face & said that one of his patients called it a face-lift
Also, does anyone know or have the purple/red patches on my knuckles? Mine are extending to my first finger joint and also have appeared at the base of my thumbs.
Take Good Care!
Posted 21 March 2009 - 01:14 PM
That was almost eleven years ago and now I don't have the skin tightening or thickening. But I still do itch sometimes!
Posted 22 March 2009 - 04:33 PM
Posted 22 March 2009 - 05:25 PM
Although my scleroderma is in remission, still I find skin on back is much softer than my chest.
Posted 22 March 2009 - 05:57 PM
Kelcie's is much different, when she was 2 we noticed that when she was in the sun parts of her skin would tan, and other areas would stay white. The doctors just kept telling us it was a pigment problem.
Then last October we found out she had an extra bone in her right foot so her orthopedic said we needed to have it removed.
That is when the rash popped up, in the same area were they deaden her leg for surgery, the orthopedic thought it might be a reaction from the shot.
But she has nothing on her hands, only legs, back, stomach, ankles, arms, face and back of knees.
Posted 23 March 2009 - 03:16 AM
Posted 30 March 2009 - 02:47 AM
The skin on my lower back feel thick & stiff, but under the top layer of skin & much more so on the right than the left, if I lay on my back in bed, I always have to adjust that side -- sounds weird I know. On the front side, I just feel like my skin is attached to the lowest ribs, so if I stretch my arms up or take a deep breath it pulls on my ribs.
A few months ago I started noticing a loss of range of motion in my shoulders, just when I go to pull shades closed or when I am washing the kitchen table with big circles, and when I shave my pits (haha) I have to make a conscious effort to lift my arm as high as I can otherwise my armpit gets cut. It took a number of times of shaving to realize that was why I was suddenly getting cut every time. lol.
Posted 31 March 2009 - 09:57 AM
I am sorry for the challenges so many of us are facing but honored to be among such a strong supportive group
Since I wrote the original post, I fear I may have started skin thickening. I have two flat patches just under my nostrils and a white patch between two knuckles that had gone from a dot a few weeks ago to about 1cm square now. My cuticles are pretty swollen too, some with red blood vessels just under the skin. Will bring this up with the rheumatologist during my appointment next week but hoping for input from you.
Also, have any of you been prescribed 200mg/day plaquenil instead of 400 mg per day? Curious about that, though I believe it has helped my severe fatigue some. I pretty much crash after 1-3 pm but I am getting SO much more done in the mornings, darling hubby is thrilled to have clean clothes and dishes again and I am slowly regaining control of my messy house!!
The plaquenil has not helped the sausage fingers unless they could have been worse than they are now which is possible. I slather my hands in lotion and bag balm but the red/purple coloring persists on my knuckles, and lower 1/2 of fingers and thumb.
Hugs to all and thank you for all support!
Take Good Care!
Posted 01 April 2009 - 02:03 AM
Hi KD ,
My son is on 200 mg Plaquenil, once a day.
Take care, Everyone.