Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


How Long Have You Been Diagnosed?

  • Please log in to reply
4 replies to this topic

#1 bowbec


    Senior Bronze Member

  • Members
  • PipPipPip
  • 43 posts
  • Location:Ooltewah, Tennessee

Posted 01 September 2008 - 02:37 AM

I have been diagnosed since May 2005

I feel that my disease is progressing. I just had all my tests done and it is in my lungs now. :angry:

I feel better on meds. We tried tapering off and I just couldn't handle it, but we think we have it under control. My main symptoms now are GERD, Indigestion, Constipation. At the time of diagnosis, my main symptoms were muscle soreness, fatigue, joint pain etc..

Overall, I do think I am doing well. I am still working 31 hours a week. I plan to do so as long as I possibly can. As hard as it is sometimes...I NEED the motivation!

Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 01 September 2008 - 01:27 PM

Hello All,

I was diagnosed 2007.

Is it progressing? I have just had what the sclero nurse referred to as a flare up so I can't see how it's not. :angry: If areas of skin had loosened a little (still nothing like normal skin) and then become stiff again despite being on Cellcept for 10 months, I don't think it can be anything else but progressing. In addition to which I now have bowel issues whereas I did not at diagnosis. I am also having other intermittent symptoms that I intend to ignore until they formally declare themselves. This policy has worked thus far.

Yes I feel better on meds and do acknowledge that overall Cellcept has helped my skin tightening. I can't pinpoint any side effects to it either which is always a bonus.

I don't feel it's under control as my symptoms determine what I do/don't do all day everyday whether I like it or not. However positive or determined I may be if I plan to do something and am then unable to because I feel awful there's nothing I can do about it and I never know how I will feel from one day to the next.

My main symptoms now are mobility issues (walking aids/wheelchair required outdoors), contractures on every finger which means they are bent over at the middle knuckle, immobile joints at ankles and wrists, tight skin most everywhere, loss of flexibility of all joints, fatigue, pain, itching, bowel issues and the kitchen sink.

At diagnosis all of the above except bowel issues, however, of the above all were worse at diagnosis than they are now. I like to think this means I am moving in the right direction but it probably means diddley.

Hope this helps as the posts have made very interesting reading.

Look forward to hearing more from you.


...it's my disease and I'll cry if I want to...
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)

#3 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

Posted 01 September 2008 - 10:58 PM

I have split this topic because the original is a couple of years old. The questions asked in it are still relevant:
How long have you been diagnosed?
Do you feel your disease is currently progressing?
Do you feel better now that you are on meds?
Do you feel you have it under control?
What are your main symptoms now?
What were your main symptoms at time of diagnosis?
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 02 September 2008 - 05:55 AM

I was diagnosed in August of 2007 after a year of suffering. My life has changed so dramatically that I'm not the same person. I have skin involvement, stomach and reflux really bad, terrible fatigue, terrible muscle and joint pain - especially in the legs, and skin involvement all over. I started on cyclophosphamide but had to quit it as it started attacking my bladder. I am now on Cellcept and for a while it was working on the skin but it is now starting to tighten up again. I should I think be in my magical "remission" that's supposed to happen about now but I think the opposite is happening and I am actually getting worse. I am so thankful that I have my quarterly appointment coming up in October as I am so concerned on what's going on.

Warm hugs to all,


#5 kellyA


    Senior Bronze Member

  • Members
  • PipPipPip
  • 73 posts

Posted 03 September 2008 - 05:03 AM

Here's a few questions...

How long have you been diagnosed? 2 Years, although I think I had this for a very long time, when I was pregnant with my first 9 years ago my doctor kept telling me my fingers were puffy,,

Do you feel your disease is currently progressing? YES
Do you feel better now that you are on meds? Not on any meds yet
Do you feel you have it under control? A little
What is your main symptom now? Hands are tight and shortness of breath
What was your main symptoms at time of diagnosis? Puffy fingers and feet