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Anyone With Morphea Skin Patches?


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#1 meredithinpa

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Posted 11 November 2006 - 08:59 AM

Hi
I was diagnosed with morphea, I have patches on my legs, trunk, back, and all started with patch on the breast one year and half ago...

As I was not diagnosed when started, I was diagnosed recently...

My doctor was very kind, Im using creams, corticosteroids, the vitame D one also...
but I'm so scared...

he said if this didn't get better he was going to try giving me oral medication...however he wanted to try with the creams...and see if it helps ..because he says the medication has side effects...

so, that leads me to think that the medication must be about immune depressants...I have no idea...

Does anyone has experiences with oral medications? or anything that slow the progression? or send it to a remission??

thanks
Monica

#2 Heidi

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Posted 11 November 2006 - 09:48 AM

Hi Monica,

Welcome to the forums! I am glad that you have joined us, but sorry it is because you have morphea. I don't know if you have had a chance to read much about morphea, but here is a link to information we have about it on the ISN web page:
Morphea Scleroderma
There you will find information about creams as well as oral medication.

I am sure others who have morphea will jump in soon. Again, welcome!

Warm wishes,
Heidi

#3 meredithinpa

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Posted 11 November 2006 - 10:20 AM

Hi thanks!
I hope I hear from people with localized or generalized morphea, with skin alterations...

I think it is very helpful when people can discuss what are the meds theyare taking and what treatment , and how they are responding...since it is a rare condiition, sometimes even the dermatologist may not be aware of other treatment options...

For what I have read, I learned that morphea on the skin doesn't affect organs, and the course of the condition can last from one year to five???
at least I have not had any indication of organs involvement according to my dermatologist..however I know I t is a good idea to have it checked with an intern medicine doctor...

My history...One year and seven months ago all started with a small patch in a hiden area in one of the breasts...I thought was breast cancer...like IBC wich is a also a rare , dedliest disease...My ginecologist didn't have a clue..so I had a surgery for a biopsie ..and no cancer was found...but the doctor didn't have an answer...I was uninsured so guess what ..I'm still making payments on that...

For all these months I started to get more color skin changes on my trunk, I have one patch in each leg, on my back and arms. I really thought I had cancer, and maybe dermatities and fungus or something like that..
the worse patches are in the breasts...so, I had to be courageous and I went to the dermatologist and he biopsed five areas....It is all morphea.
I asked him if he had other patients with this, he said yes....I wonder if that is true...He was so kind...he said it was " hard to cure"... My skin could improve, but it would never be the same....I'm using those creams...in hopes that it will at least tame this thing. He said if we don't see improvement, then he will try oral meds...but they pres3ent side effects...But I'm all for anything that send this thing to a remission...At least I'm thankfull that he knows about it...I know there are doctrors out there so clueless...

My body presents those brown spots, since I'm caucasian...
On my arms the spots are rosy, but are barely noticeable... didn't change color ..
On my belly, but it is not ugly. I don't have it on my joints, I don't feel pain or skin tightening at all...I'm not itchy...

I can deal with patches on my body, on my legs, arms, but I'm so so scared that it will appear on my face....

So, if anyone has experiences to share, anyone trying PUVA, UVA1 treatments, creams, immuno depressants and the like?

thank you all,
you all stay welll

#4 tmgilbertpt

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Posted 12 November 2006 - 03:15 PM

Hello,

I just started UVA light treatments for my morphea. I have morphea patches everywhere, but my face. In the past I was getting the spots injected with steroids to help them loosen up and ease the pain. This treatment did work but now I have too many areas to be injected. One of the medicines my dermatologist recommended for morphea was methotrexate, but unfortunately I cannot take this due to lung involvement. I have also been prescribed Dovonex and Protopic creams for the morphea patches....this does help...just a pain to use when you have so many spots. Good luck, Tammy

#5 mowingqueen1

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Posted 13 November 2006 - 08:02 AM

I have morphea also from my lower back to my knee. Mine is very deep and has crossed two joints. I was not diag with morphea until about 5 years ago, however my skin started changing about 20 years ago. I have been on several meds in the last few years and I can tell you that everyone's body is different. Just because the meds did not work for me it might work for you. Some of the meds I tried were Dynacin, Dovonex, and Captopril. I also did the PUVA for 6 months 3 times a week. I did the injections every 4 weeks for 2 years. Keep in mind that I do have pain because of crossing joint and extremely deep harding skin. At this time I am taking Decadron. I just started this month. We won't know if it works until about 2-3 more months. The best thing I have found for myself is this message board. I read it often and on my doctor appts we talk about everything others are trying to see if it is for me.