Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Would you share your diagnoses story?


  • Please log in to reply
6 replies to this topic

#1 Kimberlygolden

Kimberlygolden

    Newbie

  • Members
  • Pip
  • 8 posts

Posted 31 August 2015 - 07:21 AM

Hi,

Would anyone be willing to share your diagnoses story? Your first symptoms, how long it took to get diagnosed? If you have diffuse or limited?

Thank you!

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 31 August 2015 - 12:05 PM

Hi Kimberly,

People are certainly welcome to share their story in this thread.

You may also want to read more posts throughout this forum, and also look at our incredible patient story collection, of over 1,000 patient and caregiver stories (in many languages) on our main site. Over 300 of these stories were included in our Voices of Scleroderma book series. And each of the stories are linked to relevant medical pages on our main site, so that people can see examples of what it is really like to live with an illness, or symptom.
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.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 September 2015 - 08:13 AM

Hi Kimberly,

 

The other members of the Forums will be very relieved that I'm not intending to bore everyone again on the subject of my symptoms and diagnosis (at one point I was at risk of becoming a social leper, as all my friends were heartily sick of hearing every minute detail of my medical tests and treatment. :wink: ) I've included a link to my ISN profile page detailing my symptoms and diagnosis and another link to one of my original threads about the treatment I received.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Kimberlygolden

Kimberlygolden

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 8 posts

Posted 02 September 2015 - 07:23 AM

Thank you both.

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 06 September 2015 - 12:57 AM

Hello Kimberly

Welcome and my diagnostic journey is also a personal story, in fact it's that feature that brought me here.

Have a read of them, it's helpful to see how other people arrived here.

Take care.
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)

#6 greypilgrim256

greypilgrim256

    Senior Bronze Member

  • Members
  • PipPipPip
  • 74 posts
  • Location:New Jersey

Posted 24 September 2015 - 02:59 PM

Hi Joelf, I read your story back from 2009.  Are you still on steroids?  They really are like the miracle drug.  I am down to 3mg per day but can't seem to go lower.  My joints in my left hand howl with pain when I do.



#7 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 26 September 2015 - 12:26 AM

Hi Greypilgrim,

 

I'm on 4/3mgs of Prednisolone at the moment and trying to reduce further with a view to coming off them completely.

 

When I first went on them I felt so much better and also was feeling rather smug, as I didn't appear to be suffering any of the side effects. However, having now been on them for six years, I'm afraid most of the side effects have manifested themselves. :sad:  The weight gain, paper-like skin that damages easily, a Colles fracture and worse of all Avascular Necrosis, which has mucked up my hips, have made me much less enthusiastic about them than I was!!  :wink:  They do help my lungs and joints though, so I'm not sure if I'll be able to come off them completely. Also, because I've been on them for such a long time, it's possible that I may need a substitute, as my body no longer produces it's own steroids.

 

Although they can be seen as a "miracle drug" they should be used with caution, for Scleroderma sufferers. Please see our Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)