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

Finally admitting it

  • By Jrls · Posted 11:31 am
  • Discussion in How my diagnosis has changed my life · 0 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 ...

Tips to ease the pain

  • By sg518 · New reply 11:14 am
  • Discussion in Systemic scleroderma · 6 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 ...

Kindness of Friends

  • By Barnsey · New reply 11:07 am
  • Journal · 8 replies
  • I know that so many of us have stories that involve loss...of independence, of family support, of friends turning away. I just wanted to share an incredible story of this past weekend, and the kindness ...

Seeking More Natural Therapies

  • By Hannah7287 · New reply 10:45 am
  • Journal · 3 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 ...

ini Metdown at Dr

  • By joylav · New reply 10:24 am
  • Journal · 2 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 ...

Cyclophospahmide Effects on me

  • By missmarshmallow · Posted 10:12 am
  • Discussion in Systemic scleroderma · 0 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 ...

test came back negitive?

  • By HyeGyong68 · New reply 10:12 am
  • Discussion in Newly diagnosed · 6 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 ...

Cousin just diagnosed

  • By Kzoo · New reply 10:00 am
  • Discussion in General discussion · 15 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 ...


  • By Shanzie · New reply 9:54 am
  • Discussion in General discussion · 3 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 ...

Digital Sympathectomy & or Joint Fusion

  • By mizoo5 · New reply 7:01 am
  • Discussion in General discussion · 1 reply
  • 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 ...

Nose bleed

  • By LT565 · New reply 6:13 am
  • Discussion in General discussion · 6 replies
  • Hi all, Periodically I get nose bleeds. They do not last long, but I wonder if it is sinus infection, as I have sinusitis, or a problem that can be associated with Sclero. Thanks in advance for any ideas ...

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

  • By Johanneinsc · New reply 2:13 am
  • Journal · 22 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 ...

Digital Ulcer - need advice for treatment options

  • By theswordpen · New reply 12:40 am
  • Discussion in Systemic scleroderma · 14 replies
  • Hey guys, I'm newly diagnosed so I don't have a doctor I 100% trust yet. My current rheumatologist has put me on 5mg of Norvasc and also is having me put on nitro cream daily. Now he wants me to get a ...

Face Inflammation

  • By MahmC · New reply 12:14 am
  • Discussion in Treatment options · 12 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 ...

why doesnt family understand

  • By sharn · New reply yesterday at 11:51 pm
  • Discussion in Systemic scleroderma · 4 replies
  • I've ben trying to find the post about family members not understanding and being I sensitive. I've had reason to reflect on this, especially with events going on in my life . Its gotten me thinking about ...

Vitigilo and Scleroderma

  • By alij32 · New reply yesterday at 11:29 pm
  • Discussion in General discussion · 6 replies
  • Hi. I am new to this forum. I am 39 and recently diagnosed with UCTD. I have tested positive for the Scleroderma antibody numerous times. I have an elevated SED rate and Creative protein for the past ...

Where have all the AT docs gone?

  • By possumpig · New reply yesterday at 11:26 pm
  • Discussion in Treatment options · 17 replies
  • Hi again, everyone. I'm looking into AT for my CREST. I've been reading the recommended books and learning all I can about it. I wrote to the RoadBack organization to request the name of docs who offer ...

Retainer for my teeth

  • By Bella428 · Posted yesterday at 10:56 pm
  • Discussion in General discussion · 0 replies
  • 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 ...

Raspy voice anyone?

  • By 5Jeni5 · New reply yesterday at 10:44 pm
  • Discussion in Systemic scleroderma · 26 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 ...

any helpful drug treatments for sjogren's?

  • By deborahjean · New reply yesterday at 10:40 pm
  • Discussion in Treatment options · 10 replies
  • hello my fellow suffer's on the journey : ) i was diagnosed with scleroderma and sjogren's about 20 years ago. this past year, however, i've had a significant sjogren's flare. my whole head feels freeze-dried ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders

Inspire others

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.