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RebekahS

Morphea, new sites forming after getting better 3 years ago...

6 posts in this topic

Hello everyone. I am 27. I was diagnosed with localized scleroderma, or morphea, about 5 years ago.

 

I had a big spot on my anterior abdomen and a very large area encircling most of my right breast, and a couple of tiny ones. I was diagnosed via biopsy after 3 different fungus creams--that obviously didn't work--and all four doctors at the clinic scratching their heads. The spot on my breast actually dug into my skin so badly that it deformed my breast severely.

 

So, over the past couple of years, the spots got better. The one on my abdomen has gotten really thin (without using the steroid cream) and you can see my veins in the area. The one on my breast has gotten better too. There is still a lot of thick skin, but it has relaxed enough that the shape is closer to normal.  

 

Over the last couple of weeks, I have noticed one starting on my left breast. At first, I wasn't sure, but now the thickening has begun as well as the shine. On most of the websites that I have read, it mentions morphea kind of stopping after 3-5 years, sometimes getting a little better; however, I don't recall seeing any that talk about it coming back.

 

My question is, have those of you with morphea (or knowledge of it), heard of it coming back? Do you think if I go to the doctor and get the steroid cream (mine expired long ago and I always forgot to use it) that it will help prevent my left breast from becoming deformed too? Thank you for taking the time :)

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Hi Rebekah,

 

I'm sorry to hear that your Morphea appears to have flared up again.

 

I have no medical training, apart from a now out of date first aid certificate; however, I do understand that it's quite possible for new patches of Morphea to appear. Thankfully, I've not suffered with Morphea myself, but I know Amanda does have it and will probably be able to advise you further.

 

I would suggest that you do go back to your doctor; however, currently, UVA1 phototherapy is widely recommended as a first-line treatment and it is also used for treating well-established morphea. I've included a link to our medical page on Treatments for Morphea, to give you some more information.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Rebekah

Welcome and sorry you have morphea in such a place. I have it all over my thighs, back, upper arms, oh, and butt. I also have systemic scleroderma.

Scleroderma can wax and wane and although it is supposed to follow some sort of pattern, doesn't necessarily. When I saw my scleroderma expert recently, he saw my disease hadn't read the book, neither has yours!

Reality is that scleroderma can do anything it likes and frequently does.

Jo has given you treatment details and I can't add more.

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Rebekah,

 

Jo and Amanda have given you great advice.  I am just swinging by to welcome you to Sclero Forums.  I hope you are able to begin a proper treatment program for Morphea soon!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Thank you all for your feedback and greetings.

 

Hopefully I will be able to see a specialist soon.

 

 All the best!

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