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Biomarker for Diffuse Scleroderma skin has been discovered!


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Skin Changes


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#1 fri83

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Posted 18 May 2008 - 04:32 AM

Can you please describe the skin changes that occur with scleroderma? I can only find information that says skin thickening and hardening.

I have patches on the outside of my ankles and elbows that are hard and thick, it resembles elephant skin and its scaly at times. is that similar to the skin changes that happen with scleroderma?

Thanks for any input.

#2 barefut

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Posted 18 May 2008 - 05:01 AM

Hello fri83,

Welcome to the forums. I can describe my skin changes for you. Specifically my hands and face - my fingers have become thick in that they resemble sausages (yea, not too pretty) In normal hands you can pinch the skin on the knuckles but you can't on mine. I can forget about wearing rings anymore.

My face has become tight and as a result, my mouth has become smaller. The skin itself is supple to the touch but it's like all the muscles and conntctive tissue is tight. Stretching exercises in the warm shower every morning helps a lot.

My elbows sound like yours too and they also feel like they have paper cuts or glass shards in them at times. Consistent use of a good, thick moisturizer helps my elbows.

Don't know if the elbow thing is sclero related - I think a lot of people have the dry, elephant-like skin on elbows.

Glad to see you posting. Looking forward to hearing more from you.

#3 omaeva

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Posted 18 May 2008 - 05:14 AM

I don't have any 'official' (that is doctor says it is) skin tightening. But I'm positive about the skin around my nails being shiny, and I do have the razor blades in my elbow, the skin seems to pinch quite a bit. Lotion definitely helps. I also have the elephant skin ankles but I've always had them, and recently I'm finding exfoliants and lots of lotion right after a shower or bath really helps by locking in the moisture.

#4 anonym4444

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Posted 18 May 2008 - 11:24 AM

Hi,

as far as the elephant skin on the elbows goes...

a) I have that too and I had it all my life as far as I can remember....for sure I had it at least 20 years before I even knew the word scleroderma...(so in other words, well before I had any symptoms that would have brought me to the idea that I have scleroderma - I know for sure the date (very sudden) were my scleroderma suspected problems started and that was only about 1 year ago. However despite having elephant skin there (that sometimes also scaled in the past), it is still such, that I can pinch it and it doesn't feel hard or shiny even now (something I suspect would be different in real scleroderma cases that involve the elbow).

B) unless that was a precursor for being susceptible to the disease I think this has nothing to do with it.

However I also have thicker skin (that is extremely dry) on the hands and on the fingertips it feels a bit like I have superglue on them and as my fingers are also swollen, wearing my wedding ring also became impossible- the skin over the knuckles seems harder especially on that finger...and if I pinch it, its about double as thick as on the other sides finger....now that could be due to hurting the skin by trying on and off the ring from time to time just to see how bad things have gotten...so far I can still pinch the skin there and if you see the previous response, that it seems that further into the disease you couldn't anymore. (or I dont have it which would be great...)

Question would be: how long did it take to become so hard and tight.

So far I only have the slight sausage like appearance (mainly due to swelling, not thickening) especially in the mornings.
And I have the strange feeling on the fingertips which feels like superglue which I attribute to the disease. And the skin wrinkles strangely in the bathtub and feels horribly dry even with a lot of lotion and scales on the fingertips.

But: as I have no diagnosis yet (heavily likely though that I will sooner or later have it), I can not tell for sure, that these are the right signs.

K.

#5 luvbnmom3

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Posted 19 May 2008 - 05:12 PM

My fingers feel like super-glue-ish when they're swollen & it is humid, like I can't golf because my fingers all stick together & are too fat. I don't know if that's the kind of sensation you're speaking of. My fingers stick together like... like 2 rubber/silocone type objects that don't slide if rubbed together... they just stop eachother from sliding & kind of stick. That's how my fingers are.

OOh Ooh! I know... ever experienced the texture of a baby-bottle-nipple that is getting worn out some & fuzzies start to stick to it (or a pacifier)? My fingers are sticky JUST like that... is that what you mean?

#6 epasen

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Posted 20 May 2008 - 07:43 AM

Hiya,

with me, the skin is getting tighter, and actually thinner rather than thicker.. At least on my tummy I can see the blood veins right through it. I haven't noticed any thickening.

Pigmentation also changes. In my case it's like dark brown with a hint of blue.

Emmi

#7 Piper

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Posted 20 May 2008 - 01:22 PM

Hi, My fingers are tight and shiny till the first joint then swollen & shiny above.Also getting hard bumps on the first joints that hurt like the dickens when you knock them. I can't spread my fingers apart and the palms are hard and pulling my fingers in from the palm side. Anyone's like mine?I also have hard patches on the outside of my elbows that I've had for a year or so now.

Hugs, Piper

#8 Shelley Ensz

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Posted 21 May 2008 - 06:01 AM

Hi Fri,

That's a really good question!

Please keep in mind I have no medical training at all. But it is my understanding that thick and scaly skin on both elbows and ankles would not be due to scleroderma, and would not be diagnostic of scleroderma. Scleroderma does not cause scaling skin and this is not a typical pattern or distribution for systemic or localized scleroderma.

It's possible this could be simple calluses, but perhaps even ichthyosis. There are many different types of ichthyosis, as well as other skin conditions like dermatitis and psoriasis. Ichthyosis is often referred to as "alligator skin".

I'd highly recommend you read up about these conditions, and if it seems to be more than a callous, which can be self-treated, then please consult a board-certified dermatologist for accurate diagnosis and treatment.

Even if you have scleroderma (elsewhere) it is not likely that these particular spots would be due to scleroderma. And a tip for all of us it to never assume that any new symptom we get is automatically due to scleroderma, even if it is listed as a scleroderma symptom. If you think about it (or read our Scleroderma Symptom List) nearly every symptom imaginable can be encountered in scleroderma...but many times they are due to other things, or are simply an entire illness in themselves, and it is important for our doctors to evaluate each symptom individually and not just chalk it up to scleroderma.

Also, nearly anything you imagine can be encountered among a wide spectrum of scleroderma patients (such as on this forum) because on top of having scleroderma, we are all susceptible to every other condition and illness, as well. So sometime it is hard to sort out what is, and isn't, due to scleroderma, which makes discussions like this valuable for all of us.
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.

#9 RobinAustin

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Posted 22 May 2008 - 12:44 AM

Without being able to look at your hands, it kinda sounds like you might have calcinomas. Do they sometimes break open and ooze a little white stuff and then take FOREVER to heal? I've become an amateur wound specialist as of late due to the fact that my dermo prescribed the strongest steroid cream out there for my forearms and hands and it was too strong so I developed these nasty sores after a few weeks of treatment. That was two months ago and I'm still trying to get them to heal properly. The scarring is the worst part ... The calcinomas are common with sclero patients. They're little deposit of excessive calcium ... apparently harmless but not the nicest things to feel or look at it. I also have very dark pigmentation on my arms and hands. Looks odd when I rest my hands on my legs while sitting :o ) The contrast is pretty remarkable! Skin changes are apparenty specific to each individual ... everyone's are unique to them so, if it you didn't have it before the diagnosis, ask your Dr. if it is sclero related ... chances are that it is. My hands feel like sandpaper more so than rubber nipples these days ... possible my skin is at a different stage? They still feel like sausages at times depending on humidity, etc but mostly they're excessively dry and have lots of bumps and scar tissue. I have hyper pigmentation (always have and not new) so any trauma to my skin results in dark scarring that lasts forever ... the scars and bumps are usually the first thing people notice about my arms. I've got the answer to "what happened to your arms?" down pat to 2-3 sentences :o ) pretty succinct and if I know the person well enough, I'll elaborate but otherwise it's usually enough to satisfy acquaintances and wo-workers. Good luck and just keep trying different things until you find something that works for you ...

#10 mando621

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Posted 22 May 2008 - 05:36 AM

I got into the rheumatologist today and discussed my issues. He checked things out, said I definitely had Raynaud's, dry mouth, dry eyes. At this point, he checked the nail folds and while the capillaries weren't hooked, they were enlarged and slightly abnormal. He pinched my skin and thought it might ever so slightly be thicker on the outer most digit of my fingers, but not enough to consider a problem. He didn't think I had thickened skin above the fingers.

I was sent out for labs, and depending on how those turn out he will see me in 3 months if anything shows up.

Can someone test for skin thickening by pinching? Sclerodactyly, he said would make the skin fixed and he wouldn't be able to pinch it.

He did mention that my upper lip looked funny. It doesn't move like it should when I try to talk, and my teeth are pushed in by my lip.

When I had an IV put in for a test, the nurse remarked that my skin was thick on my wrist. Rheumatologist said it could be that I have naturally thicker skin and the needle resisted slightly.

Anyone ever heard of that?

Thanks.
Mando.

#11 jefa

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Posted 22 May 2008 - 06:29 AM

Hi, Mando. I am similarly frustrated by the subjective nature of these tests. The problem is that the people who make the assessment often have never seen the skin in its 'normal' state.
Warm wishes,
Jefa

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#12 lizzie

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Posted 22 May 2008 - 08:18 AM

Hi Mando, I think that pinching the skin is the standard way to test for skin thickening. When one of the rheumatologists did my skin score I had to strip down to my underwear and she pinched the skin in a number of different places to check for thickening. She actually pinched the skin or her own fingers to guage it against the skin on mine.
Lizzie

#13 mando621

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Posted 22 May 2008 - 11:31 AM

Would a dermatologist do something different to test for skin thickening? I've heard of a "punch test" on this website. I can't imagine that is too much fun, especially if they take multiple samples.

Mando

#14 anonym4444

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Posted 26 May 2008 - 06:14 AM

Hi,

what I ment with superglue feeling is this strange numb like sensation (as the superglue makes the skin harder and lets the normal fingerprint creases disappear...and that is exactely like it feels...totally smooth (so that I have trouble opening a juice bottle, as the nomal grip is missing...hey and I am male and have still all the strength...but if your fingers just slide over the bottle lid...)).

So that is what I ment with superglue feeling...even having trouble operating the trackpad on my company laptop.
And its not the track pads fault...it is brand new and nicely textured...just my index finger tips are smooth like plastik and not like normal skin.

K.

#15 anonym4444

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Posted 26 May 2008 - 06:19 AM

Hi,

the palm pulling sounds a lot like mine. The swelling for me however is especially on the lowest part of the fingers.
And if they are more heavily swollen sometimes then I also have the difficultly spreading them apart (and you can see the skin that is between the fingers being much thicker than normally...basically the part of the skin which dugs use to swim...it is especially thick between index finger and thumb on such heavily swollen days...yet in contrast to many I can still make a fist...but if it is haeavily swollen it hurts if I try to often and you bet I constantly do...)

K.

#16 janey

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Posted 26 May 2008 - 01:03 PM

Mando,
Apparently there are several ways to measure skin fibrosis due to scleroderma. On our skin fibrosis page under diagnosis, there are several methods listed. Information on a new sensing devices called a vesmeter was posted in the newsroom a couple of weeks ago. Here's the article:

Quantification of hardness, elasticity and viscosity of the skin of patients with systemic sclerosis using a novel sensing device (Vesmeter): a proposal for a new outcome measurement procedure.

Others articles talk about ultrasounds, a laser-based technique to create images of the skin layers, microarrays to analyze skin cells, and durometers that measure the depth of an indention made in the skin thus indicating its elasticity. They all sound very interesting and less invasive than a skin biopsy. But then my doctor alway used the standard pinch and look technique. :blink:

Big Hugs,
Janey Willis
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#17 Piper

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Posted 28 May 2008 - 02:15 PM

Hi K, It's good to hear that someone else has the palm pulling in. I only see my G.P who tells me that it will get hard down the complete length of the finger before the palm starts to harden. Well, my palms are as hard as a rock, and my elbows also on the top. Don't know what's causing that then.
Hi Mando, My Dr. doesn't pinch my fingers he take one between his thumb and forefinger and sort of wiggles it back and forth to see if it's hard. Mine move above the 2nd joint but not below, they seem to be solid down there and won't move.
I don't think my bumps are calcinosis as they've never opened up. I was told my fingers are bent due to osteoarthritis so maybe that's what the bumps are.
Take care,
Hugs, Piper

#18 jefa

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Posted 29 May 2008 - 07:01 AM

Hi, Piper. I have had the same discussion with one of my rheumatologists who insists that the hardness must progress from the tips of the fingers down and that the back of the hand should be hard before the palm. Well, I have hard skin on the sides of my fingers and the very tip and very hard and shiny palms. The backs of my hands can still be picked up with a pinch. The undersides of my fingers are puffy and shiny.

Mando, I asked my dermatologist about a biopsy. She said that in general, they don't like to do biopsies for skin in scleroderma - when you get to the stage where you can see something in the biopsy, you usually have plenty of clinical evidence. She said in particular they don't like to disturb the hands with such a procedure unless there is a risk of some kind of malignancy.
Warm wishes,
Jefa

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