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Kathy D

Where did your skin thickening start?

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Where did your skin thickening start?

 

I'm curious!


Diffuse Scleroderma Diagnosed March 2009

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My skin tightening started primarily in my knees, of all places. However, it's my understanding that it is more common (or considered to be more typical) for it to begin in the fingers.

 

Where did yours start, KD?


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.

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Good Question!

 

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.

 

HONEY

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Hi Everyone!

 

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.

 

Hugs,

 

Janet

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My skin thickening started on the fingertips, back of hands and face and then my arms, the fingers themselves have little thickening.

 

Lizzie

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Hello All

 

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.

 

Take care

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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This topic is very interesting.

 

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 :lol: . 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.

 

Mando.

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Hello KD,

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


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Mine started on my right index finger and quickly spread to my entire body except some patches on my back. I had one softening phase and then another hardening phase which has been worse than the original one. I started IVIG a few months ago and now it is softening again. Crazy!


Rosa

Diffuse Sclero

dx Jan 2006

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Hi all,

 

Happy Saturday!

 

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!

 

KD


Diffuse Scleroderma Diagnosed March 2009

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Good question. In my case, I had aggressive systemic scleroderma and experienced the symptoms immediately within a sort time period. From diagnosis in 4/98 when my skin was still flexible, my skin tightening began within seven to eight months. It began with extreme itching all over, arms, legs, chest, shoulders, neck, back etc. It felt like a bad case of dry skin. Then I recall my skin on the tops of my hands, arms and shins taking on a shiny appearance and the density of the skin started feeling very hard and thick. It became uncomfortable when the skin from under my chin down to my chest became very taunt. I couldn't move my head upward because the skin was so tight it would pull the skin on my chest. :blink:

 

That was almost eleven years ago and now I don't have the skin tightening or thickening. But I still do itch :huh: sometimes!

 

Hugs,

Razz


Live well, Laugh often, Love much

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Great question, I am so happy with all of the responses since sometimes I feel like nobody else can really relate unless you experience this diagnosis yourself. Mine started in my fingers. I first noticed the Raynaud's in 2004, I blew it off as Raynaud's until I noticed my fingers were constantly "fat" My thickening stayed primarily in both my hands. I had no other issues until after the birth of my daughter 3.5 months ago. since then it has rapidly gone up my arms and is in my face and neck. I find it difficult to turn my head to talk to some one with out feeling like the skin on my face is being pulled the opposite way. I just noticed "spots" on my neck last night I now feel like a cheetah. I also have started with tightening on my hips. All in a matter of 3 months. Any suggestions on getting it to relax is welcome. I put coco butter on my neck daily but I feel like it has no relief.Hope this helps!

-Anderson

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My skin tightening started on my face and chest almost four years before officially diagnosed with Scleroderma.

Although my scleroderma is in remission, still I find skin on back is much softer than my chest.


Kind regards,

 

Kamlesh

 

 

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Hello again,

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.

 

tjw

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My hands are puffy and tight but the real tightening is in my forearms from just above the wrists to just below the elbows. The skin is tough as leather and my forearms are visibly deformed from the restriction. It's like a really wide rubber band around the forearms.

Robin

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The underside of my hands first, soles of my feet, & my lower back, but I feel like I'm getting thick & stiff from the inside out and my entire body is worse on the right, the left side always follows suit though. My face feels tightest around the hair line, I feel my skin pull tight on my neck when I turn my head & tight at the waist when I bend or turn at the side.

 

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.

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Thank you everybody for your kind responses!

 

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!

 

KD


Diffuse Scleroderma Diagnosed March 2009

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<<have any of you been prescribed 200mg/day plaquenil >>

 

Hi KD ,

 

My son is on 200 mg Plaquenil, once a day.

 

Take care, Everyone.

Margaret

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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,

 

Peggy

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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?

 

HONEY

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Hello.

 

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.

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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.

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