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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 reese

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Posted 17 June 2007 - 10:20 AM

I feel like I already know all of you since I have been actively viewing this site for months. So it is time to introduce myself, I am a 33 yr. wife, mother, with #2 on the way with MCTD. I was misdiagnosed at 16 with juvenile arthritis but luckily was placed on plaquenil and went into remission after 3 years. During a 10 year remission, I continued having mild raynauds and arthritis flares only during stressful periods. After the birth of my first child things changed, I refused to take plaquenil during pregnancy since I was feeling great even though doctors advised it and two weeks post partum symtoms came back with avengence. Arthritis in all of my joints, and a nasty rash all over my body that started out like an allergic rash (even biopsied as a allergic rash). The rash eventually turned to a purplish color resembling bruises and finally after a year another biopsy showed it was MCTD with increased collagen production. I have ANA (1:320), RNP (126).

Right around the time of the increased collagen production diagnosis I found out I was pregnant with #2. After discussing my options with two Sclero experts at UT Houston and Hopkins I have decided to continue the pregnancy on plaquenil and predinosine. I am also getting the UVA-1 light therapy 3 times a week which is absolutely amazing! I am lucky enough to live down the street from UT Southwestern where one of the three beds in the US is located. UVA-1 therapy has stopped my overproduction of collagen in my skin which had started to tighten in my hands and forearms. It has also stopped the overproduction in my legs even though I didn't have skin changes there.

I have seen men and women come in for their treatments with severe skin tightening and have incrediable results. One woman started her treatments coming in by wheelchair-she walks in now!

This is a wonderful group of strong-willed, kind individuals and I am glad to be here.

#2 jefa

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Posted 17 June 2007 - 10:27 AM

Welcome, Reese. I am so glad you found us at the Sclero Forums. I am sorry to hear about your diagnosis of MCTD. It sounds you have found a competent team of doctors and I wish you much luck with your pregnancy under these circumstances. This has been a great source of information and support for many of us. We look forward to hearing more about your treatments as they progress.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sweet

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Posted 17 June 2007 - 11:51 AM

Hi Reese,

Welcome to the sclero forums. I am so happy you are now comfortable to post, as I'm sure we will learn a lot from each other.

Sounds like you have a great team of doctors watching and taking care of you.

I look forward to knowing you better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey

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Posted 17 June 2007 - 12:18 PM

Reese,
What a great story you have! Thank you so much for joining the forum and taking the time to share your experiences. I'm thrilled that the UVA-1 therapy is working for you. Members ask about its effectiveness quite often, so it's good to here from someone who has personal experience.

Congratulations on the birth of you first child and expecting your second child. It sounds like you and the baby are in good hands. Please keep us up on how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Rachelle

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Posted 17 June 2007 - 02:18 PM

Wow, thanks for the info on the UVA therapy. I just posted some questions and one was about that. Nice to meet you!