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Biomarker for Diffuse Scleroderma skin has been discovered!


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New Diagnosis - Advice?


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#1 RM6

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Posted 20 April 2016 - 10:40 PM

Hello All -  Like rlm1988 who recently posted, I am newly diagnosed with Morphea... just a little unsure that's all it is and wondering about your advice.

 

I have had a large patch  since childhood that seemed to spread in my 30's - but whenever I asked doctors they said they didn't know what it was and did not want to investigate.

 

Lately, I've been having breathing trouble, extreme fatigue etc. with exercise and my GP did Spirometry - which has shown a mod -mild pulmonary obstruction that is not alleviated by inhalers.  At the moment, I've just been told to wait and see another 6 month if it improves.

 

Separately, I seemed to develop allergies and was sent to a Dermatologist.  While there, I took the opportunity to ask him about the scarring as I've always wanted to know what it was and as it quite large.

 

The Dermatologist did a skin biopsy and phoned to say it is morphea (and told me NOT to google it!)

 

He's posting me a prescription for a cream.  He told me to measure it to see if it's growing.  He said it's otherwise not a problem and is likely 'burnt out'.

 

My questions...

 

1.  Can a skin biopsy alone diagnose morphea vs. systemic scleroderma?

 

2.  When I go back to my GP, what should I be asking?

 

Thanks in advance for any advice!



#2 Joelf

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Posted 22 April 2016 - 09:15 AM

Hi RM6,

 

Welcome to these forums!

 

Morphea is a form of localised scleroderma and whilst it is a rare occurrence for it to develop alongside systemic scleroderma, it's not impossible, as Amanda can testify. Your doctor is possibly waiting to see if the patches or your other symptoms worsen, which is why he's suggested reviewing in another six months. It may be necessary for you to undergo more tests; as morphea scleroderma is such a rare and difficult disease to diagnose and treat, we recommend that, if possible, you consult a listed scleroderma expert.

 

UVA1 phototherapy is now the recommended first-line treatment for morphea, and I believe some of our members have had this treatment, with reasonable success.

 

We do have many other threads on morphea, which you might find helpful and informative; just enter "morphea" and "Forums" in the search engine on the top right hand side of the screen. 

 

Kind regards,


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#3 Shelley Ensz

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Posted 09 May 2016 - 01:17 PM

Hi RM6,

 

Altogether, it probably wouldn't hurt for you to consult a scleroderma expert. They could figure out if you have "only" morphea or if perhaps you also have an overlap of some sort. They could make sure you have baseline tests done, and determine whether or not you need any treatment.

 

After all this time, it is quite likely that your morphea is "burnt out", meaning that it has quieted down and isn't getting any worse. It's normal for that to happen in two to five years for most people, even without any treatment at all. And only very, very rarely does morphea ever co-exist with systemic scleroderma, from zero to 4% of the time, depending on the study, and although many scleroderma experts claim never to have encountered such an overlap, we do have Amanda here, who has both types of scleroderma at once.

 

An interesting thing is that they can run a blood test, as people with morphea who have anti-centromere antibodies are the ones most likely to develop systemic.  Also, about 25% of people with morphea develop one or two symptoms beyond just skin involvement. It doesn't mean that they are developing systemic, but just that their morphea affects more than only the skin. See Morphea Scleroderma on our main site, for more information.

 

Please keep in touch, and let us know what you find out.

 

:hug-group:


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