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Hello again! I am limiting myself to two questions a day, so I promise no more! :blink:


I have more questions involving skin changes over the past two months.


Over the past two months, I have noticed that the skin on the underside of my fingers has gotten extremely rough and dry. My skin seems to have thickened considerably on the undersides of my fingers and has turned a yellow/orange color. One of the first fingers to do this is now turning a brownish color.


My skin has also been splitting on the undersides, which is extremely painful.


Prior to the last two months, my knuckles got extremely rough and dry, with horrible, bleeding cracks all over, pain and redness. I used a handmade hand cream, which helped immensely, although, at this time they are, once again, getting quite bad.


The other skin issue has to do with the sensitivity in my skin all over my body, but especially on my face. My skin is losing its sensitivity. I am not experiencing numbness or tingling, but have noticed that I am unable to feel anything when I scratch my skin. If I dig my nails deeply into my skin, I am able to feel, but otherwise, not.


I also have a very rough, raised, dry spot behind my left ear lobe. This raised area is approximately one inch long and one-quarter inch wide. It is not painful, but sometime itchy and occasionally weepy. I have had this for many years. Unfortunately, I have ignored this for so long, that I forgot to mention it to my rheumatologist and the dermatologist (who did my skin biopsy). I did research on keloids, but it does not seem to fit the descriptions.


I did mention the new skin issues to the P.A. and asked if they were caused by the medications, and she said "no," but nothing else.


Has anyone else experienced issues like mine? Could they be indicative that my disease is changing?


Also new to my skin changes are extremely dry, splitting lips. My lips split when I smile or eat. I do use lip balm at night, but they continue to dry out and split during the day.


I have also noticed a patch of brown skin developing over my left knee. It is approximately the size of a softball, not raised or rough, but with a strange pattern of brown and white. In a way, it looks like a giraffe pattern.


Thank you, once again, for all of your encouragement and support since I have been here.


Warmest wishes,



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Hi there, Janet-


I also have thickening finger pads, I attributed mine to the fact that I have nerve damage in both my hands and forearms and because of this I can burn my fingertips without realizing it along with other things and I thought the skin was thickening as a result.


I also have brown patches on both my elbows and knees... they look constantly dirty (which is very embarrassing) and the skin is very rough with fissures and can get sensitive and sore. I have tried soaking them and slathering on creams, lotions and ointments. If I grin and bear it I can soak them then scrub scrub scrub until I basically scrub off the dark patches, but that leaves them red and sore and the patches come back within days, sometimes worse than before.


I have Sjogrens, and one of the things that I have because of this is dry lips that always seem to be cracking and peeling. I also can get thrush very easily. I have tried just about everything on the market for my lips and find that plain old petroleum jelly is sometimes my best defense, but about three years ago even that was not helping and the corners of my lips were so sore and split that I could not open my mouth at all without them bleeding. I then went to the mouth care isle in the store and found a lip balm made for fungal infections and tried that... and within a few days it was almost healed. It is not a cure, but it definitely helps when my lips are at their worst.


Be very careful when choosing a lipstick, many of the long wearing types are very drying and I have found that glosses or tints are best. You have to keep applying it all day but it is gentler. Also, replace your lipsticks or glosses every three months on average to prevent bacterial growth. (This advice was from a friend of mine who is a cosmetologist.)


Hope the part about the lips helps and as for the rest, if I get any answers from the Dr's I will definately pass it on.




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Hi Penny :)


How odd that you would mention burning your fingers all of the time. I have been doing that, also, in fact just now cooking dinner. It seems that every time I cook I burn myself badly, not just the superficial burns that I used to get, but the deeper burns that leave scars. I never thought about the fact that I may have nerve damage in my hands, however, part of what I have been experiencing for the past few years are tingling, complete numbness, and bad carpal tunnel in both hands. You really turned a light bulb on for me on this one. Thank you!


I plan on showing the brown patch of skin to my doctor on my upcoming visit. It is very embarrassing, and as you say, I feel like it looks dirty, or at the very least, just odd! If he gives me a good solution or answer, I will pass this on to you.


I have been wondering about Sjogrens lately. I have such a very dry mouth and eyes, and the upper part and back of my throat are so very dry that it hurts like a bad sore throat. I didn't know that Sjogrens also affected your lips. They split when trying to eat, smile, anything. I will go and find the lip balm you suggested!! It is so painful to deal with.


I do use the long-wearing liquid lip color. It didn't occur to me that it was probably not so good to wear, but it actually does get dry to the touch, so that makes perfect sense. (I really wonder sometimes why I can't come up with the obvious on my own!! :) )


Yes, you gave me some very good advice and insight.


Thank you very much, Penny.


Take good care,



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I also have thickend skin on my hands, my hands tend to swell so much that they tend to be difficult to bend at times. Mine started off with just my right pointer finger turning blue that was 3.5 years ago now all my fingers turn blue and most recently extends into my palm. i can not feel things with my finger tips really anymore. espicaly when they get this calloused feel about them. i get infections in the ulcers. i just started on cellcept I am really hoping that it will loosen my skin. my skin in my throat is also very tight and makes it difficult to turn my head completly left or right with out feeling like my face is being pulled the other way. i have a difficult time temperature in my hands.

i don't know if this helps at all but I thought you should know your not alone. do they have you on any meds that are benifical? i will keep you posted on the cellcept I only recently started it. good luck!!!


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Hi, Anderson:


Yes, it does help to know this!! In fact, a lot!! Alot of these strange symptoms baffle me, I either think it is just me or all in my head (perhaps conditioning from all of the doctors who have told me so :) ), so to know I am not experiencing these things on my own really helps.


I also have this loss of sensation in my fingertips and toetips and callouses in places that shouldn't be calloused. I've noticed that they get so thick that the edges eventually start lifting, then start catching on fabrics.


I haven't experienced blueness in my hands, but extreme white and red. Also, the swelling, Anderson. The undersides seem so puffy and red all of the time. My rings are so hard to get on anymore! The undersides of my hands also peel frequently. It is nothing painful, but the very top layer just flakes away. This is new for me, also.


I don't have the ulcers, I am sorry that you do, Anderson. It would be so painful to have the infections in the ulcers! Yes, please let me know about the cellcept. I really hope that helps you.


Are all of these symtoms related to Sjogrens?


I am not on any medications for the skin issues. Except for the thickened fingertips and toes, everything else is new within the last two months. I do go back for a followup in about a month, so hopefully, I will get more answers that I can post as well.


Best wishes,



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I have noticed a loss of sensitivity to my skin, too. Mostly just in the hands and feet so far. As far as dryness, petroleum jelly is about the only thing I've found that really helps. I put it on my lips throughout the day and on dry patches at night (face, elbows, feet, hands). Such a simple thing and it works better than the pricey creams. I wondered if anyone has noticed that their skin scars very easily with even minor scratches? My skin has become fragile so it scratches easily and just doesn't heal as quickly or completely as before.


Hope you find some relief!


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You know, that nasty scarring from even a minor scratch was one of the first things I noticed! Even a pinprick will result in an inflamed area and then a scar eventually. (Things do take a while to heal.) I did wonder if that was part of the disease or just me. I suspect it might have something to do with the general fibrotic process and our dry, dry skin.

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I dread whenever I sustain any type of injury because it takes so long to heal. I mostly get cuts, nicks or nasty bumps on my knuckles just from handling dishes, pots and pans or even chopping vegetables. If I try and move a heavy object like a chair, box or laundry basket, I end up banging my shins or bumping my knuckles :( trying to get through the doorways. As much as I take my time and use extra care it's unavoidable sometimes.


The only good thing I can say, these injuries heal much faster :) than the ulcers I get, which lasts a long long time.




Live well, Laugh often, Love much

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My skin seems to scar with just the tiniest of scratches these days and it didn't use to. I have scars on my arms from blood draws and the bleeding time test where they make a little nick with a razor. Plus I have the kind of calcinosis that causes white liquid paste deposits under the skin. After it dries up it leaves behind a sore that scabs over and leaves nasty scars. My forearms are covered in these scars. I never read anyone else talking about the liquid calcinoisis deposits, but I've read about it before on this website and other sites. Anyone else have this going on? Its looks like white paste they used to use in school that came in a jar with a brush in it. Very white and thick though sometimes it has yellow watery liquid inside.

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