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lauraw

Limited Systemic Sclerosis and Morphea

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Hello everyone,

 

I haven't been on this forum for 8 or 9 years as I have been getting along pretty well with my sclero.

 

I have a new symptom and I'm wondering if anyone can shed some light on this for me. I have had a discoloration above my left knee for 2-3 months, now. I can't really say if it has enlarged because I haven't really paid much attention to it until recently. It is a cluster of lighter brown spots or patches.This area of skin is rough and the discoloration isn't raised. Looks like the pictures of morphea I've seen.

 

Can anyone tell me if morphea occurs with limited systemic scleroderma? I'd appreciate for any insight anyone might be able to offer.

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Hi Laura,

 

How lovely to hear from you again and I'm pleased to hear that your Scleroderma has settled down.

 

It is unusual to develop Morphea alongside Systemic Scleroderma, but not impossible, as Amanda can testify, having both Diffuse Scleroderma and Morphea. I've included a link to our medical page on Systemic Scleroderma Associated with Morphea to give you some more information. However, in order to clarify the situation, I would suggest that you go back to your Scleroderma specialist, in order to determine any treatment you might need. Phototherapy, UVA and PUVA is now considered to be the recommended first line treatment for Morphea.

 

Please do post again and let us have an update. 

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you so much, Jo! Unfortunately, I just saw my rheumatologist for my 6 month check up 4 days ago and didn't think to show him the skin changes on my leg. I have another visit scheduled for November, so I'll probably just wait until then, unless I see more rapid progression. If it's just a cosmetic issue, I won't have anything done. I do appreciate your warm welcome and the link to information!

 

Laura

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Hello Laura

 

Could it be hyperpigmentation? I had brown spots on my forearms when first diagnosed with scleroderma but they faded after a year. I think you can get pigment changes at any time though. I have posted pictures of morphea in our photo gallery, have a look at this list which includes others as well and see if anything looks familiar.

 

I think it's worth showing your rheumatologist any changes even if we think they're insignificant. Let us know what they say when you do!

 

Take care and welcome back, is there anyone around you remember?


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 Amanda, 

 

I'm sorry it took me so long to get back to the forum to see whether anyone else responded to my question. Thank you for responding. My patches look similar to the image posted by nikisboi25. They are not really like the ones you uploaded. I have seen other photos on Google Images that look very similar to my patches. I feel pretty certain at this point that they are morphea patches.

 

I will show them to my rheumatologist when I have my six month check up. 

 

Thank you for your interest and help!

 

Laura

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Hello Laura

 

No worries, glad it helped? After you visit your rheumatologist let us know what they say.

 

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 Laura,

 

Welcome to Sclero Forums.  Yes I see you joined us in 2006. My how the time flies!  I'm glad your scleroderma has been pretty stable. It's such an odd illness, isn't it, where it can sometimes plod along for years without much change, and then suddenly there can be a monkey wrench thrown into the whole works.

 

Since the patches are on your knee, if it is morphea it could possibly go deeper and affect the range of motion in your leg -- and because there are treatments for morphea now, particularly UVA1 phototherapy -- and because treatments are best at preventing damage than fixing stuff that has already occurred -- I'd recommend that you see your rheumatologist earlier, if possible.

 

One consideration is that they might not be over pleased to think that you just allowed something to worsen, for over six months, while on their watch. So think of this as a way to keep them happy, and to be on the safe side of things too, since it could be just hyperpigmentation, but it could also be morphea, or who knows what else.

 

You know that we don't know how your insurance works, what your co-pay is, how bad it is, etc. ad infinitum, so as always, this is your call, and just my two cents' worth.  Oh wait, I just looked on the ledgers, and you haven't paid your two cents' dues for the year!  Sorry, make that my FREE advice, which is probably about exactly what its worth. :emoticon-dont-know:

 

: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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