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LookingUp1979

Linear Morphea (Coup De Sabre)

9 posts in this topic

Hi everyone,

I'm brand new here.

Just got diagnosed with a form of morphea called Coup De Sabre, which is a line running from my eyebrow up to my forehead.

I've been prescribed Methotrexate 15mg, and weekly IV steroid infusions. I'm also using topical steroid creme on the skin.

Anyone else dealt with this, or got any words of wisdom?

It's all a bit overwhelming.

 

Thanks :unsure:

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Hello LookingUP,

Welcome to the Sclero Forums! I'm sorry that I can't provide personal information on En Coup De Sabre, but I can provide a link to our medical page: En Coup De Sabre. This page provides links to professional sites that discuss the complications and treatment of this type of Linear Scleroderma. It also has links to personal stories of patients who are experiencing the same things as you are. I hope you find this information and the stories helpful.

 

Have you started your MTX and steroids infusions yet? I was on MTX for 3 years, so let us know if you need information about it. Please keep us informed as to how you are doing.

 

Again Welcome! We're so glad you found us.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Lookingup!

 

Welcome to the Sclero Forums. I'm really glad you've joined us. Very sorry however about your new diagnosis. Janey, gave a great link, so I hope you find value in it. Looking forwarding to hearing more from you. :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi LookingUp,

 

I'm just popping in to add my welcome to you too! Here's one of our famous ISN hugs: :emoticon-hug: They come with absolutely no side effects (not even weight gain!) and are readily available anytime you might need one.

 

I'm sorry about your diagnosis, but also glad you've found us. We're a friendly bunch and always glad to share our experiences or lend an ear. If you'd like to meet some of us in 'real time', we have twice weekly chats (timed to suit a couple of different time zones). And if you need any help navigating around either the Forums or the medical pages, just ask.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello LookingUp

 

Welcome to the main forum! You've been given some great information already so I'll just 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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I just joined, but I was diagnosed late 2010 and in January 2011 I had surgery where they cut as they called it "the scar" out and literally pulled my head together as my line ran from the top of my head straight down to an inch into my forehead. I have a little scar now but I am losing my hair again and it has come back. I was warned before surgery that there was a possibility it could come back, but I don't think I could do a surgery again, is there anything you guys could recommend?... Any support at all, actually, would be really nice. It is hard trying to talk to people about it and no one understanding. I am getting married in April 2013 and I guess I am just feeling really down right now with it coming back and all.

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Hi MandieM,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Linear Scleroderma and that it's troubling you again now. I can understand that you don't want to have further surgery especially as you're getting married next April and there is information on the link I've given you about other treatments, although I'm afraid this condition can't actually be cured.Thankfully, I don't suffer with linear Scleroderma, so can't advise you from my own experience; however we also have some Patient and Caregiver stories and another Linear Scleroderma thread which I hope you'll find helpful and interesting.

 

Now that you've found our forums and joined our community, you will find a wealth of support and help here and I'm looking forward to reading your future posts.

 

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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Hi Mandie,

 

Welcome to Sclero Forums! I'm glad you've found us and hope that you can also hang around to serve as a resource for others who have en coup de sabre.

 

I'm sorry it is reactivating. I'd say the very best thing would be to consult your scleroderma expert about this. Treatment options are always improving and there may be something they can do to help prevent it from worsening.


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 Mandie

 

Welcome to the forums!

 

Sorry the scleroderma has come back despite surgery, you must be so disappointed. I wouldn't want surgery again either.

 

Concentrate on your upcoming nuptials, get lost in the sheer fun of it, choosing dresses, most importantly yours of course, the accessories to go with them like jewellery, the cake, oh yes and the groom's stuff as I assume you're choosing that all as well!

 

Of course now that you're one of the family we will want photos posted in our gallery so we can see how fabulous you look, how yummy the cake was and so forth!

 

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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