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Snowbird

Does anyone have CREST along with Morphea?

22 posts in this topic

Hi Shelley and Everyone,

 

I know, Shelley, that you are a scleroderma encyclopedia, but if I understand your last post correctly, I believe you said that morphea is a permanent condition. I have read that it can go away after a couple of years.

 

I am one of those very rare birds that had morphea and also has CREST. My morphea was confirmed by biopsy and it lasted for about 3 years. It was a large patch on the skin of my stomach. It faded about one year ago. I also have CREST, confirmed by the presence of anti-centromere antibodies and anti-mitochondrial antibodies, Raynaud's, telangectasias, sclerodactaly, and calcinoses, among other things. I just wish I knew what is going on internally or on a microscopic level that causes some people to have both conditions when it is so unusual to have both.

 

Thank you to any of you who have any thoughts.

 

One uncool mom

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Hi One uncool mom,

 

Welcome to Sclero Forums! I'm glad you've joined us and send my best wishes to you for coping with both localized and systemic scleroderma at once.

 

Really and truly, I have no medical training at all. Honest! :VeryHappy:

 

I agree, you are entirely correct in that it is commonly acknowledged that morphea can fade, and in a few cases even go away entirely, in the first two to five years or so, even without any treatment at all. However, and please correct me if I'm wrong as we always strive to be as accurate as possible around here, I have not heard of a documented case of morphea occurring as briefly as Marsha described. Therefore, it is very likely that she had something other than morphea, and if it ever recurs, she should see her doctor to find out exactly what is going on.

 

We have a few other "rare birds" around here as well. Amanda, for example, has the double-whammy of both, so I'm sure she'll be piping in soon to greet you, as well.

 

: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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Hello Oneuncoolmom

 

Welcome to the forums and I'm lovin' the name! I think what Shelley meant is that morphea patches don't come and go in a few months, yes the localised form of the disease can wax and wane the same as the systemic form, but this wouldn't be over a period of a few months but rather years.

 

I have morphea, bullous morphea and diffuse systemic scleroderma with gastrointestinal involvement, serious heart involvement, fatigue, foot ulcers, mobility issues including joint contractures and sclerodactyly. Why I have 3 types of the disease goodness only knows! I am into my 4th year and there are no signs of the disease(s) letting up just yet. :angry:

 

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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Although I still do not have proper diagnosis (lab tests negative) my rheumatologist assumes that I have limited systemic (CREST). Additionaly, for 2 years I have a shiny itching part around my belly button which has started to collapse (small hole within the tissue 3-4 mm wide). Rheumy thinks this might be morphea. For me it would be a very favourable diagnosis because it would mean that there is a chance that I do not have difuse sclero.

 

Regards and a wish for long hot summer.

 

Erika

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Hi everyone

 

My whole thing started with Morphea and Lichen Sclerosus, so I too have an overlap of illnesses. The morphea flares and fades, but never goes away completely. Moisturizer does not cure it up for me either. It is itchy when I get a flare, and the area swells up in my case as well. It is on my right wrist right over that little bone there, and when it flares I get the huge dent in my wrist, looks horrible.

 

And welcome to all the new comers to the forums!

 

Jean

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Recently I have read a medical article about SS and morphea overlap in which the author says that this overlap is not a rare case as it was taught. According to the author it is more frequent in patients which have negative lab work.

 

Here is the link of an article:- Systemic Scleroderma associated with Morphea

 

Regards

 

Erika

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Hello Erica

 

Let me just support the article you have highlighted. I have both systemic and morphea and my blood work is negative and always has been. Weird eh?

 

Take care.


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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