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Question about Morphea


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#1 Monica38

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Posted 07 March 2009 - 05:06 PM

Hi,
I'm 38, I have generalized morphea. I was diagnosed with a biopsy in 2005 or 2006 because it was spreading rather quickly. I was prescribed two expensive drugs.

But, well, I think the skin of my hands (actually the skin on top of the knuckles) is getting weird, a bit inflamed, is dry, and seems a bit rougher for a few weeks now. Maybe is the morphea being sneaky again?

I got an appointment with the dermatologist in two weeks. Couldn't get earlier. In any case, the dermatologist seems to know a lot about morphea but I'm researching a lot in order to ask him about phototherapy or other options etc.

In any case, I have a question...

Did anyone with morphea buy and read this article? I wonder if I can find the info elsewhere? If not I think Im going to buy the article. It is from September, 2008 and is in the page on morphea treatments under bosentan: "New developments in locallized scleroderma"

Talk soon!

Positively
Monica
Monica In PA
generalized morphea /probably + Sjogren's

#2 janey

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Posted 07 March 2009 - 06:33 PM

Monica,
Welcome to the ISN forums. Sorry to read that you have some new symptoms with your morphea. I don't have the localized form of scleroderma but I can direct you to our pages on morphea. You'll see the abstract of the article you mentioned. We don't have the full article available nor have I read it. It sounds quite interesting and something you might find very helpful.

You mentioned phototherapy. We do have a section with some studies on phototherapy and morphea. You might check them out. From what I've read, this therapy has been helpful for some. I think we've had a couple of forum members use it. Hopefully, they'll chime in.

Again, welcome. I hope you find some good information. Let us know how your rheumatology appointment goes.

big Hugs,
Janey Willis
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#3 Jeannie McClelland

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Posted 07 March 2009 - 06:46 PM

Hi Monica,

Welcome to the Forum. I'm sorry you are experiencing new symptoms.

The article you referred to doesn't seem to be available as free full text; only the abstract is available free online. You might see if your local public library can obtain a copy of it for you. My library has been very helpful to me in the past.

I hope all goes well with your dermatology appointment.

Best wishes,
Jeannie McClelland
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#4 Monica38

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Posted 07 March 2009 - 07:12 PM

Hey thanks for the speedy reply.
well, I have been through all links. and reading so much on morphea, that I think I am getting to anxious. I read a lot but I have not really talked or met anyone with morphea and checked what has helped them.

Besides dermatologists, what doctor can help screening for other conditions? I see people go to rheumatologists and pulmonologists. Well, I am also going to see an internal medicine doctor next week, and I since I'm going there for my little aches and pains, I want to ask if she could test my blood for anticentromere antibodies (ACA), and other things, to check my health. I did read that people with morphea rarely progress to systemic sclerosis but I guess it is time for me to check that, or I will drive myself nuts :lol: :lol:

I think Im going to get that article, and read it, and see if there is some good news in there! I guess $35 is not going to break the bank ahahahaha

Take care you guys!
talk soon! :blink: ;)
Monica In PA
generalized morphea /probably + Sjogren's

#5 evomal

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Posted 08 March 2009 - 12:02 AM

Hi Monica,

I am like you. I was diagnosed with Morphea in 2006, and I am 37. I have it on my arms, legs, and stomach. It looks so ugly and the only treatment one specialist gave me was light therapy, which did nothing to my condition. Another specialist told me that I will just have to live with it for the next seven years. I am in Australia (not sure where you are), but I don't think anyone knows much about the condition here.
It would just be nice to talk to someone who is going through the same thing. Could I also ask what were the names of the pescribed medicines, and did you try them?
Regards

Connie

#6 Amanda Thorpe

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Posted 08 March 2009 - 04:14 AM

Hello Monica

Welcome and please keep us informed of your progress.

Please also bear in mind that blood tests are just part of the picture, they can be helpful but aren't necessarily the be all and the end all. For example most people with sclero have a positive ANA (anti nuclear antibody) but then some don't so blood tests alone should not be the only diagnostic tool for sclero but rather a combo of symptoms and tests.

As you say rarely does morphea develop into sclero and I trust your diagnostic combo will confirm this.

Take care.

Amanda
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#7 Penny

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Posted 08 March 2009 - 09:39 AM

Hello Monica and Connie and welcome!

I am sorry to hear about the morphea but glad that you stumbled upon us here, this is a great group of people.

I do not have morphea so I can't help you in this area, but I am sure that other members will pop in that can help direct you to great information and share experiences with you.

Penny

#8 Amanda Thorpe

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Posted 08 March 2009 - 11:19 AM

Hello Connie

Welcome to the forum!

When a doctor says "live with it" that actually means "I have no idea what to do and don't have the guts to say so!"

Yes we have to learn to live with our conditions because they are incurable BUT they are treatable. There are things to help manage the symptoms brought on by the morphea and hoepfully others with morphea will be able to advise you.

Take care and look forward to more of your posts.

Amanda
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#9 Wohali

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Posted 09 March 2009 - 02:53 PM

"When a doctor saysm "Live with it," that actually means, "I have no idea what to do and don't have the guts to say so!" "

That reminds me of what the rheumatologist said to me. he said "Your ANA is borderline so you don't have CREST yet. But it will probably kill you and there is nothing I can do for you."

Hence why I am treated by a very brilliant primary care physician for CREST as, yes, my ANA eventually sky rocketed and I got worse. The rheumatologist would not even treat the pain and he's the only rheumatologist for 300 miles. At least my primary care physician has kept me alive this long and does treat me for pain.

#10 isobelle44

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Posted 10 March 2009 - 04:41 AM

Dear Monica, I have generalized morphea and have had it since 2006 possibly longer. I have been through uva 1 treatments and am now on plaquinil. It seems we have our spots in about the same places, though mine also run down my arms and there are a few on my back. I didn't purchase that article you talked about but would love to know what is in it. The uva 1 treatments slowed or stopped the quick progression I was having and seemed to burn out the white centers of my spots as well as thinned them. Because of my many spots and them running together my skin is pretty tight in areas so my doctor is trying plaquinil to soften. It seems to be working between the uva thinning and the plaquinil softening but I havent been on it that long yet. it will be 9 months in June my next appt. My doctor said the spots won't go away. But I don't care so much about that anymore. Sharon