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Morphea -- Reactivating?


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#1 j3ss

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Posted 10 June 2008 - 02:32 AM

(Of all the luck.)

I posted my story in a "get to know you" thread, but here's the short version:
I developed morphea when I was somewhere between age 5 and 7. The initial flare-up was pretty bad and soon covered the entire front of my right leg (I honestly don't even remember this happening .... In my mind it's like, one day I was fine, then I had a little red rash, then I couldn't bend my leg). I didn't begin any treatment until I was thirteen because my parents couldn't afford to take me to a dermatologist. Anyway, after I finally did begin treatment with Clobetasol and Dovonext, we saw a lot of improvement. I think some of that may have been attributed to the eventual burnout as well, but either way it was nice to finally be able to regain some flexibilty. My skin also softened a lot. All was well for a while. I learned to deal with my condition and became confident that maybe it would just stay as it was forever--no better, no worse.

Then, this past year, right after I got married, the area on my hip started to change. It had never really concerned me before, because the plaques were pretty light, no indentation that I could see, etc. At first, I thought I was seeing things: was that vein more visible? Was that spot there before? Was the skin always that shiny? Now, it's unmistakable. Especially the pain that I feel most days, just under the skin. Also, the atrophy has begun to set in.

Is this normal? Any idea how much worse it'll get? I'm afraid that the process has begun to speed up a little. I'm due for my first phototherapy session in a couple weeks, so I'm hoping that it won't get irrepairably worse by then.

On a side note: In February ('08), I enrolled in a morphea study by the University of Texas Southwestern in Dallas. The doctor there is the one who referred me to the dermatologist who'll be doing my phototherapy.

Thanks for listening.
-Jess

#2 smac0719

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Posted 10 June 2008 - 11:26 AM

j3ss,

I can't speak to your particular issue, but just wanted to welcome you and wish you well with the phototherapy. Hopefully someone here will have some information to share. I too have morphea and my sclero specialist calls it keloidal morphea. My plaques are appearing at a faster pace so I truly understand the "was that spot there before". :)

I have not tried any treatment for them. Haven't been to the dermatologist lately as I'm in what I call my "dr overload" phase (too many appointments). Keep us posted on how the phototherapy works out for you.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 Jordan's Mommy

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Posted 10 June 2008 - 01:01 PM

Hi Jess,

My 7 year old was diagnosed with linear scleroderma when she was 5. It is only on her left arm, but it is from her shoulder to her fingertip. I find myself analyzing her skin at least once a week, trying to figure out if I see anything new on her body. Every little spot, bump, cut, or bruise is enough to send me for a loop! She was also on Clobetasol and Dovonex for a while, but she is now just on Plaquenil. Her arm gets much darker in the summer when she is exposed to a lot of sun--even with lots of sunscreen on. You might want to talk to your doctor about Plaquenil, as it is *supposed* to halt the progression of scleroderma/morphea.

Please let me know how your results from phototherapy go--my daughter's rheumatologist has asked if anyone I know has tried it--I know there are a few people on this site who have tried it.

Take care,
Jennifer

#4 j3ss

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Posted 12 June 2008 - 12:50 AM

Thanks you two. I'll be sure to keep you posted.

Jennifer - Haven't heard of Plaquenil, but I'll look into it. The last time I went to the dermatologist (a couple of weeks ago) he prescribed Elidel. I haven't used it yet because when I picked it up from the pharmacy, it came with two printouts about the plethora of side effects it may produce, including cancer. Call me crazy, but that's the one thing I don't have yet, and I'd like to keep it that way.

(fyi - I forgot to mention that my morphea is the linear kind)

#5 smac0719

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Posted 12 June 2008 - 02:26 PM

I am currently taking Plaquenil as well, but it was prescribed for the arthritis. It is not helping with my morphea.
I may have Scleroderma, but Scleroderma doesn't have me!