Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

new in forum


  • Please log in to reply
9 replies to this topic

#1 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 15 September 2010 - 03:59 PM

Hi, I am new. Three months ago I woke up and I could not move, everything in my body was swollen up, and I had a lot of pain and fever. I went to my rheumatologist and they ran some tests. I test positive for the ANA titer,and the Scl-70 (+5.6), so the Dr said it is Scleroderma. Now I am taking prednisone, baby aspirin, calcium, and Mobic. I still do not know enough about scleroderma, my swelling went down a little but still have problems with my hands, knees, and feet, They are running tests on my lungs,heart,etc.

If anyone can tell me more about this crazy thing I will appreciate it. I strongly believe that if I know more I will cope better,

thanks and hugs

Patty

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 16 September 2010 - 12:03 AM

Patty, you have come to the right place to learn more about Scleroderma. You will have so many new helpmates guiding you through this disease process. Everyone's story is so different. Amazing that we all have the same disease. Welcome to our Forum. I hope the Mobic gives you a noticeable amount of relief. Look through our many pages of information and ask anything you feel you need to talk about. We talk and discuss just about everything you can imagine, and then some other things. Ha!
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 16 September 2010 - 03:52 AM

Hi Patty!
Welcome to the forums. I'm really glad you've found us, but I'm so sorry to hear about your diagnosis. As Sheryl stated it can be so different for so many people. There is a lot of information on this site, take your time look around, and throw out questions in posts along the way. Here is a link to get you start, on What is Scleroderma.

I hope you find it helpful, and again welcome! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 16 September 2010 - 08:25 AM

Hello Patty

Welcome to the forum, you're in the right place for all things scleroderma. Usually once you've had the first round of tests like the ECHO, lung function, chest X-ray and so forth they then decide upon a treatment plan like immunosuppressants.

It can all be a bit of a blur in the beginning, I went from wanting to know everything to nothing and back again, from everybody with sclero to nobody and back again. However you feel is going to be appropriate for you because everyone's experience of scleroderma is unique and everyone with scleroderma is unique.

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)

#5 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 16 September 2010 - 03:21 PM

It is such a wide ranging disease but if you have a specific question, people here are very likely to be able to offer you information on similar issues.
Your situation sounds like quite a sudden and scary one. With me, I had been increasingly whining to doctors who didn't do anything for about 4 years before I got a diagnosis. So as you can see, it affects people differently. I knew things were not right but only had scattered symptoms to point out.
What I found myself doing when I got the first diagnosis was trying to read everything in the information sections but it became too obsessive for me. I found that if I limited myself to about 1/2 hour per day, I didn't get so overwhelmed.
Please feel free to ask and ask and ask.
(((Hugs)))

#6 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 17 September 2010 - 06:11 AM

Thanks for your warm welcome.

I have been taking mobic since 2002. After my back surgery I took Vioxx and when they took the Vioxx out of market, doctor started me with the Mobic. Now with this the rheumatologist gave me the prednisone and the mobic. Let's see, I got another appointment by October 25. Again thanks.

Hugs,

Patty

#7 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 17 September 2010 - 06:13 AM

Great Pamela,i look at it very informative but also scary, anyway thanks for your welcome. I look forward to keeping the contact.

Hugs,

Patty

#8 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 17 September 2010 - 06:16 AM

Amanda, thanks for the welcome. It's true I start reading and it is really scary and overwhelming. I do not know what to say, too many questions.

Thanks again and many hugs,

Patty

#9 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 17 September 2010 - 06:24 AM

Well thank you for the welcoming response. Yes it is scary and too sudden, but now I don't know if the fibromyalgia, the rosacea and the psoriasis were signs or independent conditions. It took a very overwhelming episode to get every test done. I got my next appointment by October 25, and on top of every thing I am losing hair and a red hard patch show up in my face now. Again I have too many questions and I don't know how to start in the middle.

Take care,

Patty

#10 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 17 September 2010 - 08:40 AM

Hi Patty

Wanted to welcome you too. You'll find a lot of support and factual information here, it's a great place to ask your questions. Fibromyalgia is a separate disease from Scleroderma. I was diagnosed with fibro many years ago.
Sending good wishes your way!