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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Kadi

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Posted 25 December 2012 - 09:59 AM

Hello all and Happy Holidays

I am new here. I have been having issues with my scleroderma and fingertips the past few months and decided to do some internet research and stumbled upon this forum. I am hoping for some advice or suggestions.

For the past few months I have been battling hardening around and under my nails. The skin gets hard then cracks or just breaks off if a piece gets snagged on clothing or something. What is left is a raw tender area similar to when the skin comes off a blister. There is also a numbness to some of my finger tips. I have been managing to keep it from getting horrific with constant lotioning, neosporin and bandaids on the cracks and sores, managing the pain with ibuprophen.

Does anyone else experience this? What do you do for it? Mine started up during a particular high stress period which I have eliminated but it just won't stop!

Thank you for your assistance. I am looking forward to reading the many different posts on here.

Kadi

#2 Joelf

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Posted 26 December 2012 - 06:17 AM

Hi Kadi,

Welcome to these forums!

I'm sorry to hear that you've been suffering with raw, painful places on your fingers; I've experienced similar, and I can empathise; it can be most unpleasant and you're almost guaranteed to catch and knock the effected finger(s)!!

Although I suppose, strictly speaking, they are not actual Digital Ulcers, I have included a link for you to our medical page and also to Fingernails, Fingerprints, Nailfolds, and Cuticles to give you some more information.

I've found that the tips of my fingers are always worse in the cold, wet weather (such as we experience most of the time in the UK! ;) ) and have resorted to rubbing cream on them to try and soften the skin and putting cream on at night, under a pair of cotton gloves, which did help to keep the skin supple. As I no longer have horses of my own when my hands were constantly in the wet and cold during the winter, my finger tips have improved.

We do recommend that our members, if possible, consult a Scleroderma expert, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

Now that you've found our forums I do hope that you will continue posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#3 Shelley Ensz

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Posted 26 December 2012 - 01:34 PM

Hi Kadi,

Welcome to Sclero Forums! I am very glad you found us and delighted that you posted a message. This sounds like a new issue for you, so it is something to consult your scleroderma expert about. Although you are concerned by the skin hardness and tears, your doctor might be even more concerned about your hand mobility and may want to check to see if it is time for you to begin occupational therapy to keep as much hand mobility as possible. Also, they may want to change your treatment program.

A temporary help might be to apply a thick moisturizing lotion (such as Udder Cream) and then put on plain white cotton gloves at bedtime. If you can safely do so, you can try filing down any calluses (extra skin or the parts that are going to snag) with a sterilized nail file. During the day, always put on the same lotion and then plastic gloves before using any cleaning products (even hand washing dishes). This not only protects your skin from further damage but also gives it an extra "treatment".

If your doctor sends you for occupational therapy, one of the things they will probably prescribe and teach you how to use is a wax machine. You dip your hands in the heated wax, then cover with plastic wrap and thermal mitts and leave them on, typically for half an hour. Then the wax is peeled off and your softened hands are warm enough to do stretching exercises.

Other treatments for skin tightness include UVA1 Phototherapy, which can alleviate skin fibrosis in both localized scleroderma (such as morphea) and in systemic sclerosis (such as diffuse and limited/CREST scleroderma).

So you see, it is time for a doctor visit, and please let us know how it goes.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#4 Amanda Thorpe

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Posted 26 December 2012 - 02:12 PM

Hello Kadi

Welcome to the forums! I can't add anything to what has already been said as I don't have this problem or know anyone with it. I hope the suggestions made help.

Take care and keep posting.
Amanda Thorpe
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#5 Sweet

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Posted 26 December 2012 - 02:13 PM

Hi Kadi!

I have not experienced what you are describing, but I'm sure sorry you are having to deal with it. Big hugs to you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 barefut

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Posted 30 December 2012 - 05:06 AM

Hi and welcome Kadi ~

I have experienced the same thing you are - with my finger tips splitting and bleeding - it is very painful! Everyone has given great advice - I LOVED my hot wax bath! I would use Aquaphor as recommended by my doctor - slather it on and then use the wax bath. Very soothing! Also drink lots of water to help with your skin's hydration.

Feel better soon!