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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 ksaxo

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Posted 30 July 2010 - 04:52 AM

Hello,

I'm very happy to have found these forums, I never thought I would be able to find so many people who are going through the same things as I am. So far just reading through a few posts have made me feel a little better because I have had morphea untreated for 10 years with no major complications besides spreading.

I'll start off with, I am a 20 year old woman, and had been diagnosed with Morphea at the age of 10, though it started around the age of 7 or 8. It began as small white spots on my upper back, and slowly began to become brown around the white patches. The brown discoloration (where there is shininess and you can see veins very clearly but is not hard or tight) has now spread to most all of my body (I think that's Generalized Morphea?), with a few white patches (which haven't been tight until now and still is only a couple white spots, located on my arms and legs, the hardened patches on my back have completely gone). To clarify, my skin is not tight or painful, it feels like normal skin in most places, it is just discolored and shiny and sometimes feels dry. At 17 I had my first child, and my second at 19, with regular checkups and bloodwork with nothing wrong. But now I have become very worried about myself for my children's sake since there is new spreading.

When I was younger the doctors and dermatologists had no idea what to do for me. They started me on some creams which didn't do anything at all but sting my skin...so they told me there was nothing else I could do but go home and hope the disease wouldn't progress.

From age 12 to 18 I didn't see a doctor about my skin, there were no specialist available in my area I could see, and I certainly could not afford to travel to find one. Though I knew the disease was getting worse. I was always told everything would be okay and not to worry so much. Its not the covering up my skin part that is difficult, but thinking about what could happen to me in the future scares me so much.

Anyway I had finally found a dermatologist last year and was so happy to finally be able to get this under control. Upon my visit, the doctor didn't even ask to look at my skin, he basically handed me a prescription for Methotrexate and bloodwork and sent me out the door (he also said something about maybe starting phototherapy). Being very uncomfortable with that situation I started searching online for "Methotrexate" and was very upset and scared by what I read about the drug. I was never warned about side effects, not being allowed to drink alcohol, or really what the medication did, so once I read it online I decided I was not going to take it, and didn't return to that doctor. I was so afraid after that I didn't want to see any doctor, but recently the hard, dry white spots have began showing up in a new place, this time it trails down my forearm where the brownish discoloration starts.

I guess I am just looking for some advice or opinions from people who understand the disease. I have made an appointment with my family doctor and classified it as an "emergency" but I still have to wait till NEXT Friday to see him, and he has to refer me back to the dermatologist which may take longer. I do have a few other specific questions:

1) If I were to go to a hospital if it continues to spread quickly, could they help?

2) Is Methotrexate something that would be beneficial to me without tightness in my skin?

3) If I start it then decide to stop may my skin get worse?

4) Is this a drug I will have to take for the rest of my life to keep improvements?

5) Also is methotrexate the only medication to prevent spreading? This has been the only drug I had ever been prescribed, so I am not sure.

6) Also is this disease able to be passed onto my children? I've been very upset and terrified thinking that my daughter might have to go through what I did. Again the spots are covering most of my body (besides back of legs and some places on arms neck and face) but are not tight, not painful and are not causing problems to my mobility. Sorry this has been so long, I have just been so upset and afraid over the last few days and have nobody to talk to about it. Thank you in advance to anybody who reads this and may respond, just need some real, clear answers which I have never been given.

KSA

#2 Shelley Ensz

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Posted 30 July 2010 - 08:20 AM

Dear KSA,

Welcome to Sclero Forums! I'm glad you found us, and there will be plenty of people to address your questions. I'll take a whirl at it, but please remember, I'm not a doctor, I have no medical training at all.

First, what I think you might want to do is see a listed scleroderma expert because scleroderma is a rare disease and it is hard to find doctors who are aware of it or who know how to treat it. They will be able to advise you as to whether and what treatments would be appropriate for you, and can answer questions 2-5 regarding your particular case.

The genetic studies done on scleroderma show that systemic scleroderma (a different kind than morphea, which is localized and never fatal) is hereditary about 2% of the time. This means that if the same holds true for morphea (which could certainly be debatable), that there is a 98% chance your children would not develop morphea. That means they are far more likely to get the usual things, such as cancer, heart disease, diabetes, etc. To put that into perspective, a risk level like this would be higher than that of the general population but, the risk for cancer alone is 1 out of 3 (33%) and about 8% get diabetes. See: Causes of Scleroderma: Genetics.
Warm Hugs,

Shelley Ensz
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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.

#3 Jeannie McClelland

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Posted 30 July 2010 - 10:56 AM

Hi KSA,

Welcome to the ISN Forums! I'm sorry you are here because of morphea. I hope we will be able to help you with some reliable information, but bear in mind we are all volunteers, not medically trained, and cannot diagnose nor advise on treatment.

First off, let me recommend the Morphea page. There is a lot of good information there, including treatment options, possible causes, and so on. Secondly, your question #6 is one which many people ask. Although there is a form of sclerodema that is heritable, Familial CRST with sicca symptoms, I think the general thought is that although an increased disposition towards autoimmune diseases may run in families, there is little or no evidence to suggest your children may get morphea. We've got a page on Genetics, if you'd like to read more.

There are a lot of our members who are or have been on methotrexate and the articles on methotrexate for morphea are here and below methotrexate on that page are articles on phototherapy. KSA, you should never be sent away from a doctor's office with a prescription and as little information you were given. It's a good idea to ask about treatment options, too.

Is it possible for you to see a scleroderma expert? We have a list here that might be of use to you. I think most, if not all of us, think seeing someone familiar with scleroderma specifically is a good idea, even if most of your care is done by another specialist (such as a dermatologist). Or maybe you could find a dermatologist specializing in morphea. A University's teaching hospital could be a good place to start your search.

I wish you all the best and hope you'll post often.
Jeannie McClelland
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International Scleroderma Network

#4 janey

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Posted 30 July 2010 - 12:11 PM

KSA,
Welcome to the Sclero Forums! You ask some great questions and have some very similar concerns that many of us have had. Jeannie and Shelley have provided some great advice and links. Please take the time to review some of the studies on those pages, specifically, methotrexate and morphea. It appears from recent studies that it is beneficial. Reading the side effects of any drug is scary. Sometimes I feel that companies list everything but the kitchen sink as a side effect. I was on methotrexate for 3 years and the only side effect I had was a thinning of my hair. I didn't lose it, but it did thin out. Once I got off it, it grew back and now I have thicker hair than I had before. I have systemic scleroderma, but I do feel that the methotrexate was responsible for stopping my skin fibrosis. However, everyone reacts different with medications, so it's impossible to know if methotrexate would help you or not. As far as - will you have to take it for the rest of your life - that's something for you and your doctors to decide. Because my disease is showing signs of stability, we are starting to reduce my immunosuppressant. I hope that in a couple of years or sooner, that I will be completely off immunosuppressants!

Please make a list of questions for your doctor and take them to your next visit. If you could see a scleroderma expert, that would be best. Keep us informed of your progress and please, don't hesitate to ask more questions when they come up.

Again - welcome!
Janey Willis
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#5 miocean

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Posted 30 July 2010 - 02:28 PM

KSA,
I am not familiar with morphea as I have diffuse scleroderma but I can tell you that most of us have gone through what you are experiencing. The internet will scare you to death reading about the disease and treatments. Doctors are unfamiliar with the disease. This site is the best resource for accurate information. Not only does it provide a wealth of information on many subjects, the forum members can offer good advice having dealt with the disease themselves. You have already received good advice and links and I second all that has been said. I wish you the best in finding the help you need.

miocean
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