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Biomarker for Diffuse Scleroderma skin has been discovered!


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So what now?

Morphea/scleroderma

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#1 Kvdn

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Posted 10 September 2012 - 04:54 AM

Well I have morphea on my neck which a year ago was 4x4cm. Now 10x10cm at least and still spreading. I have Raynaud's and asthma which have both developed in the last 6 years. I had an ANA 1:640 and a ENA positive test. What does this mean for me? My own doctor said I need to see my dermatologist who I feel is useless. He did not do the tests for 6 months because he said they would not come back positive. I take methotrexate and prednisolone and am permanantly exhausted. What now? What does this mean?

#2 Amanda Thorpe

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Posted 10 September 2012 - 02:41 PM

Hello Kdvn

Welcome to the forums. The thing is, though, if you read up carefully on morphea, on our page on Conditions Associated with Morphea, you will see that about 25% of patients develop symptoms outside of just the skin involvement. I quote from that page,

"A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up.

It's possible that you are experiencing symptoms outside of the morphea but you will want to discuss this with your doctor.

I also have morphea and unusually, systemic scleroderma. I have over 20 morphea plaques on my thighs and calves and can say without doubt that the morphea is still active right now and I have had both forms of scleroderma now for 5 years. I no longer take any immunosuppressants, by choice, because I kept developing symptoms anyway and thought the side effects therefore not worth it.

Some people find immunosuppressants, like methotrexate, very helpful and you might eventually be one of them, they do take time to kick in.

Take care and keep posting.
Amanda Thorpe
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#3 Joelf

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Posted 10 September 2012 - 03:12 PM

Hi Kvdn,

Welcome to these forums!

I'm sorry to hear that you're suffering with Morphea. It's a shame that you haven't more confidence in your dermatologist; we do recommend that our members if possible consult a Scleroderma specialist who then could perhaps recommend another dermatologist to you, who would also explain the results of your blood tests to you.

Amanda has given you lots of helpful information from our medical pages on Conditions Associated with Morphea and I've also found another thread on Morphea to give you some more information which I hope you'll find helpful and interesting.

Now that you've found our forums, do keep posting.

Kind regards,

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#4 Shelley Ensz

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Posted 12 September 2012 - 12:08 PM

Hi Kvdn,

Welcome to Sclero Forums, I am glad you found us. I'm sorry you have morphea. I may be wrong (I often am!) and please keep in mind I have no medical training at all. But it is my understanding that the ENA is always broken down into the specific antibody(s) that are positive, and those can sometimes help pinpoint possible illnesses more closely. However, it's normal for people with morphea to have abnormal antibodies of some sort or another. So the blood tests themselves usually aren't half as important as your actual symptoms.

My guess is that you'd want to be consulting a scleroderma expert who specializes in localized scleroderma (such as morphea) who could explain the complexities and oversee your treatment. They would probably also want to see if you have anticentromere antibodies, as they are the antibodies that usually appear in scleroderma patients who are at risk of developing systemic scleroderma. That's very rare, about 0 to 4% of morphea patients, depending on the study. And as Amanda pointed out, it is normal for morphea patients to have one or two symptoms outside of their skin involvement.

You might also want to take a gander at our Morphea Treatments page, including UVA Phototherapy.

Here are some warm hugs to welcome you!
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Warm Hugs,

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