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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Stacey

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Posted 06 December 2009 - 02:42 PM

Hello all...I joined the group in November 2007 and haven't really been involved this past year. Sorry about that.

I have Scleroderma with an overlap of Polymyositis. I was first diagnosed back in September 2007 and went on 60 mgs of prednizone. Fortunately I was able to taper and come off of the last year in October. This year though, I started into another flare with the Polymyositis so I had to go back on the steroids. It's been rough but I'm young and can handle it...I think.

Have any of you got the H1N1 vaccination? I was told by my doctor that I need to get it but it's extremely hard to get where I live so I'm not sure if I should push the issue and make sure and get it.

Well hope that everyone is doing well.

#2 epasen

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Posted 07 December 2009 - 12:27 AM

Hi Stacey,

It's good to hear that you have a positive attitude towards this, it's really helpful when you're dealing with scleroderma. I hope everything is going to turn better with you.

I did get H1N1 vaccination since I'm on methotrexate which means I have to get it. It was like a month ago. I was pretty sick couple of days after the vaccination, a bit of temperature and a very sore arm but it passed pretty quickly.

Take care,
Emmi

#3 relicmom1

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Posted 07 December 2009 - 04:19 AM

Yep, I got the H1N1 vac and I didn't have any type of reaction. Strangely enough, where I live (in central Virginia, USA) I was able to get the H1N1 BEFORE I could find a seasonal flu vaccine. I have had both . Our local health department had clinics for the H1N1 and that one was free Posted Image
Peace :)
Barbara aka relicmom1

#4 Shelley Ensz

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Posted 08 December 2009 - 11:58 AM

Hi Stacey,

I just want to jump in to say, "Welcome back!"

If your doctor said you need to get it, call their office and ask when they will have it for you. Most of them should have it by now, you'd think. Let us know what you find out, okay?
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.

#5 Deb1million

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Posted 08 December 2009 - 12:14 PM

Hi Stacey,

I got a letter from my doctor to advise me to go in and have the H1N1 vaccine. He said that the risks of side effects are nothing to worry about - compared to the really bad effect the virus would have on any one of us with an impaired immune system. So I had the first jab last week. Apparently, I will have to have 2 shots (I'm in the UK) as it takes more of the drug to work with the immune-suppressants I take.

My arm was very sore, but apart from my usual symptoms I get with my collection of 6 autoimmune conditions, I couldn't tell if I had any reaction to the vaccine or if it is just the usual fatigue, joint pain etc.

Anyway, I hope you have your vaccine soon, Stacey, and don't get any type of flu or anything else this winter!

Best wishes,

Debs

#6 Stacey

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Posted 10 December 2009 - 06:11 PM

Thanks for the information. I will try to get the vaccination but do not have high hopes at this point. It's extremely hard to get. So I'll continue washing my hands and using sanitizer and **** that I don't get it. I didn't even know that I was supposed to get until a month ago. When I first got diagnosed and started treatment my doctor told me not to get it, that it wouldn't help me. So last year I didn't get it. SO I was a little surprised when he told me that it was important for me to get it. The joys of having a over active immune system :)