Scleroderma Support Group

Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.

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Skin & Hair
/ Scleroderma Support Group

Newly diagnosed Morphea

deleted_user
deleted_user
I would like to talk to any others with Morphea diagnosis.

I also suffer with all over itching, Raynauds, and IBS.

The Itching, the Raynauds and the Morphea combo scares the bejeezus out of me that I have sytstemic or limited scleroderma, instead of localized. Neighbor died of systemic, and ... well, it scares me.

Do any of you morphea patients have overlap, or secondaries like lichen sclerosis (I have had biopsy to rule this out, waiting for results).

How is your morphea treated?

Do you have raynauds, and if so, for how long?

I'm scared, I'm concerned, and I'm freaking out...I need to stop reading!!!! Yet have this compulsion to do it always!

I have had a negative ANA
all clear on the anti-smoothmuscle antibody
all clear on the antimitocondrial AB

and have been told that only 0-2% of those with morphea develop systemic...

know what? I'm still scared!
deleted_user
deleted_user
I see your post was about 7 months ago so you may no longer be checking this site....but.....I too have morphea. I have had two relapses in the past 12 years. This is usually not typical. The third time my morphea came back was the only time in which it itched. But yes, that can be very annoying. Morphea is such a weird disease. I also began getting deep tissue morphea which also scared the crap out of me. It was mostly present in my trunk on my sides. My mobility began to decrease and I had to change the way in which I moved for certain things. The skin was very tight and painful at times. It's true, the more you read sometimes the worse you feel. There are so many cases out there and different variables that can affect one person differently than it would for others. I am currently on methotrexate injections once a week. It has been helping but it is a very slow moving drug, but very potent. I was also on prednisone for the first two diagnoses. How have things been going for you? Any meds?
deleted_user
deleted_user
Hi, it was a nice idea to bring this topic up again. I hope the person who wrote it is feeling better.

I was really scared when I found out I had Scleroderma. Mine is the Systemic kind I guess. I've had internal problems (Achalasia of the esophagus, arthritis / bulging disk in back, epilepsy, asthma, Raynauds) since '94 and didn't get diagnosed with Sclero. until January 2007. The only difference now is I'm achier, I have a constant really stiff neck and my hands are swollen with less mobility of my hands, neck & back. So it sounds scary but systemic type is not necessarily all that bad. At least not for me, so far I've been lucky, thank goodness. It's painful, but bearable & I can still get around. Hopefully you don't develop the systemic kind though.

Thanks for posting the topic qbuckley.
deleted_user
deleted_user
Hi, I have only been diagnosed since 5/06 with diffuse systemic scleroderma. I was terribly sick and weak because it started with congestive heart failure and extreme blood pressure. BUT, today I have stabilized & have seen some reversal of symptoms.I would be happy talk with you about changes I am making that has been helping me.I have itching too. Hugs!Toshie
deleted_user
deleted_user
Kselibrary and others-
It is scary. It stinks to be honest. Lean on your support team to get you through it!
Lets all support each other through this!
Gotmoxie
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