The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Well, here I go! Positive test for CREST...

  • By Johanneinsc · New reply 4:23 pm
  • Journal · 23 replies
  • Hello, all! My name is Johanne, and I'm new to this community. I was recently diagnosed with Connective Tissue Disease, with a positive blood panel for CREST. My Rheumy said he hated to even name it with ...

About Fibronectin - swhat they're finding out at Northwestern

  • By DaisyDo · Posted 4:23 pm
  • Discussion in Systemic scleroderma · 0 replies
  • This article should be of interest to everyone with systemic scleroderma: es/14088/20140418/identifying-new-therap eutic-options-for-treatment-of-scleroder ma.htm ...

Finally admitting it

  • By Jrls · New reply 3:53 pm
  • Discussion in How my diagnosis has changed my life · 2 replies
  • So I have Scleroderma and Sjögren's, started plaquenil 6 months ago and was finally feeling really good. I can run again a bit (3 miles max) and I have worked my full schedule for 2 months now. I thought ...

test came back negitive?

  • By HyeGyong68 · New reply 3:52 pm
  • Discussion in Newly diagnosed · 9 replies
  • Hello, I have a question maybe you can answer before my appointment. I was diagnosed with Scleroderma in 2010 that same year I had another test done and also the following year, they all came back positive ...


  • By farmgirl57 · New reply 3:47 pm
  • Discussion in Localized scleroderma · 1 reply
  • Has anyone tried orencia? I'm on MTX 10 mg. per week. I'm also finishing a prednisone taper. RA is getting worse since getting off prednisone. Going to my Dr. on Wednesday. We'll see what she suggests ...


  • By Shanzie · New reply 3:39 pm
  • Discussion in General discussion · 5 replies
  • I wanted to share my newest discoveries with everyone. First of all, let me just fill you in on a few things. I have limited scleroderma and have serious issues with gum recession due to sores breaking ...

Cyclophospahmide Effects on me

  • By missmarshmallow · New reply 3:26 pm
  • Discussion in Systemic scleroderma · 4 replies
  • Hello everybody, wondering what you think about this: I have systemic sclerosis with lung involvment. I am currently being treated with IV Cyclophosphamid, and Prednisone. I have had two cycles so far ...

Raspy voice anyone?

  • By 5Jeni5 · New reply 3:24 pm
  • Discussion in Systemic scleroderma · 28 replies
  • Hi everyone! So my newest issue is a grovely, raspy sound to my voice. While talking for any length of time, I notice my voice seems to get more horse sounding and I feel as though I have to push to get ...

Arm pain, anyone?

  • By possumpig · New reply 3:10 pm
  • Discussion in General discussion · 74 replies
  • Hi, everyone, I'm doing pretty well with limited systemic sclero and RA markers but no symptoms of RA, but just got a baffling new symptom: horrendous pain in my arm, mostly elbow to shoulder, shoulder ...

Face Inflammation

  • By MahmC · New reply 2:35 pm
  • Discussion in Treatment options · 13 replies
  • Hi, I have not been officially diagnosed yet but will see 2 different Drs. Soon. I'm very scared to even think of what I may have but my face feels tight as if I have had Botox around my eyes plus at ...

Skin Itching

  • By Kelownagirl58 · New reply 2:35 pm
  • Discussion in Systemic scleroderma · 6 replies
  • I just sent a post and forgot to mention y skin is extremely itchy right now. I have a lot of body pain as well ...

Digital Sympathectomy & or Joint Fusion

  • By mizoo5 · New reply 2:28 pm
  • Discussion in General discussion · 2 replies
  • Hello all, Can anyone tell me if they have had either of these procedures to their hands to improve the contractures in their hands as well as a way to improve circulation to the fingers and decrease ...

Retainer for my teeth

  • By Bella428 · New reply 2:24 pm
  • Discussion in General discussion · 1 reply
  • I recently had a retainer made for myself My teeth were always so straight but Seem to be crowding now awfully quickly Am I going to do damage by wearing it? I need some guidance and input Thank you ...

Opinions Wanted

  • By Confused16 · New reply 2:13 pm
  • Journal · 24 replies
  • Hello Everyone! I just joined a few days ago and wanted to ask for opinions about symptoms I have been experiencing over the past few years, as well as, blood work results that have received in the past ...

Seeking More Natural Therapies

  • By Hannah7287 · New reply 2:08 pm
  • Journal · 4 replies
  • As I fill up my daily medicine container for the week I am sickened by the number of pills I take. 17, plus 3 others on an "as needed" basis, then vitamins to top it all off. And the number of prescriptions ...

New Video at

  • By maxcel · Posted 2:06 pm
  • Discussion in News · 0 replies
  • We added the following talk this afternoon... “Support, Advocacy & Self Empowerment.” Seth Ginsberg tm This talk was part of the Tri-State Chapter's "Spring Educational ...

Cousin just diagnosed

  • By Kzoo · New reply 1:50 pm
  • Discussion in General discussion · 17 replies
  • My cousin just e-mailed me with the information that she has just been diagnosed with Raynaud's and scleroderma. She is still in shock and baffled. She knows this much so looks like limited and ...

ini Metdown at Dr

  • By joylav · New reply 1:47 pm
  • Journal · 4 replies
  • Today I had a checkup with my GP and had a mini-meltdown. How grateful I am for a doc who listens and understands the frustrations that come with Limited Ssc. I am really struggling with my job right ...

Tips to ease the pain

  • By sg518 · New reply 1:19 pm
  • Discussion in Systemic scleroderma · 8 replies
  • Hi all, my dad is constantly coughing, day, night. It's taking a toll on his body and mental health. I was wondering if anyone has any tips to help soothe the throat or any tips to help deal with the ...

red face and loose front teeth and diffuse dx

  • By fletcher21 · New reply 12:47 pm
  • Discussion in Systemic scleroderma · 20 replies
  • Hello everyone - I have asked this before but it is so frustrating. I have a red face ( sometimes it is very itchy like the sides of my face) and it gets more red at certain times. My teeth in the front ...

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About this community

The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Scleroderma Foundation, an Inspire trusted partner.