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Biomarker for Diffuse Scleroderma skin has been discovered!


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Skin Manifestations of Scleroderma


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#1 Dazzie

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Posted 07 January 2010 - 01:54 PM

I am 36 years old and I was diagnosed with Scleroderma over two years ago, after a number of other diagnosis, including seborrheic dermatitis and folliculitis. My symptoms are primarily associated with my skin (face, neck, chest, hands), but I also suffer from Raynauds and GI problems. From the last set of blood work, it appears no other organs are affected. There are times when I believe that I am having some sort of flare up because I feel fatigued, I have rashes on my skin and just feel overall, blah! I am currently getting light therapy, but only general UVA (not UVA-1), but no meds. My dermatologist doesn't have experience with scleroderma patients. It appears not many doctor do. Today, I felt compelled to join this forum because I just need to relate to others who are going through the same thing, and because I hope someone out there can share what has worked for them. I feel like my whole upper body itches -- my scalp, neck, chest, shoulders and portions of my arms. When I wake up in the morning, my hands are swollen and tight. The skin on the back of my neck and my chest is discolored (peppery, vitiligo-like) and scarred. It there anything out there to help the itching and the scarring? I just can handle the itching anymore. Nothing seems to work. Please help, or just say "hi." Thank you!

#2 Amanda Thorpe

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Posted 07 January 2010 - 02:14 PM

Hello Dazzie

Welcome to the forum, you are in the right place for all things scleroderma.
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#3 Jeannie McClelland

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Posted 07 January 2010 - 02:15 PM

Hi Dazzie,

Welcome to the Forums! It sounds like you are suffering one of the most frequent complications of scleroderma - frustration. Posted Image
Is there any chance you could have a consult with a scleroderma expert? Here's a link to a list of doctors who are recognized experts in the field. Most doctors who don't have experience with the disease will welcome a second opinion.

I can't help you with too much personal experience of the skin problems you have except the itching. That can really drive a person crazy, can't it? We do have a section on Itching and I'm sure others will also chime in with what works for them. Most of my itching has been caused by sicca syndrome (dryness) and what helps most is keeping my skin moisturized, avoiding hot baths, and all but hypoallergenic soaps.
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#4 Amanda Thorpe

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Posted 07 January 2010 - 02:30 PM

Hello Dazzie

Itching or pruritus is something most people with scleroderma have experienced at one time or another. For me it was an early symptom before diagnosis and it drove me mad. I am so glad it is now occasional and mild.

There are many things that can be tried for itching such as antihistimines and steroid creams, have a read of the information we have on site about itching.

You haven't said what form of scleroderma you are being treated for but based on your treatment I would guess morphea. As you say your dermatologist is not familiar with morphea you may wish to consider seeing a scleroderma expert who is. That way you would know you had a correct diagnosis and appropriate treatment.

I hope this helps and take care.
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#5 miocean

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Posted 09 January 2010 - 04:29 AM

Hi Dazzzie,
I am sorry you have scleroderma, it is not an easy disease to deal with because everyone experiences it differently. I have diffuse sceleroderma and my skin, lungs and kidneys are affected. Many of my early symptoms were like yours. My hands were swollen and I itched terribly. My skin was very hard. After five years I am no longer swollen and itchy and my skin is practically back to normal. Fatigue is a constant issue with the disease, for me the hardest to deal with.

You have come to the right place in finding this forum. It has been a tremendous help to me. I am sure you will find answers here.

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#6 Dazzie

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Posted 11 January 2010 - 08:30 AM

Thank you for all the responses. It appears that I have diffused scleroderma, but it is primarily affecting my skin and esophagus (heartburn). I do have Raynauds and suffer from swollen hands too. My rheumatologist believes that there are other interconnecting issues, but has ruled out Lupus. I feel like I go through flare-ups several times a year, when my whole upper body develops some sort of an allergic reaction and my skin starts changing again. I am usually very fatigued during these times. I have been experiencing a "flare up" for the past month. I am noticing that my skin is continuing to scar in the places that are most itchy and changing color. Nothing seems to relieve the rashes I'm developing. I think that it is the most frustrating part of it all right now. I know that I should be thankful that all my essential organs are intact right now, but I can't help thinking that this may all change. Does it? I hear that with time, if your internal organs are OK for the first five years of the disease, than they will likely not be affected. Is this true? I believe that my earliest symptoms manifested after I gave birth to my son over six years ago. Something happened then that triggered the disease and I haven't been the same since. However, it took almost four years to get diagnosed. The most changes I have seen, have happened in the last two years. My neck, chest and shoulders become more discolored and scarred with each flare-up. It just seems like the disease will continue scarring the rest of my body. Will it then move to my organs? Don't know, but wish I did. I guess, as one of the responses stated, I'm suffering from a serious case of frustration.
Thank you for allowing me to vent.

#7 Amanda Thorpe

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Posted 11 January 2010 - 01:01 PM

Hello Dazzie

Congratulations on graduating to the main forum!

Scleroderma symptoms can wax and wane for sure and flares are all part of the fun. Having said that it may be an idea to discuss the flares with your rheumatologist to see what they suggest, although scleroderma can't be cured there are treatments for the symptoms.

Scleroderma can have an active phase that lasts 3 to 5 years and then the disease can plateau. I don't think anyone can predict whether someone will have internal involvement or not or indeed when this will happen. When the disease plateaus you don't need to have lung function tests, ECHO's etc every year like you do during the active phase but as far as I am aware you can still develop internal organ involvement. The unpredictability of this disease is one of the reasons it's so hard to come to terms with, you never know what you're going to get or when. In the meantime we sclerodermians get on with the business of living as best we can.

Keep posting and take care.
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#8 kaykay

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Posted 14 January 2010 - 05:58 AM

Hi Dazzie - I can relate to that mad itching! Let me know if something works for you.

Amanda - tell me, how long between the itching and the diagnosis - or the onset of other distinctly SSc symptoms was it for you?

I am currently diagnosed with lupus, but seems like we can't rule out scleroderma at this point. For me the main symptoms are GI, mouth sores, joint pain, Sjogren's and recently a cough etc which I am going in for PH and other tests on 1/29. Now the itching -

#9 Amanda Thorpe

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Posted 14 January 2010 - 07:30 AM

Hello Dazzie

My scleroderma started on my shins and with the skin changes the itching came. My disease went mad from February to diagnosis in August 2007 with the itching being worse from June onwards. The itching continued to be an issue for a year then just began to ease off thankfully! When it was at it's worse it was awful.

Take care.
Amanda Thorpe
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