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#1 amberjolie


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Posted 07 July 2013 - 08:37 AM

I was at the rheumatologist a couple of days ago and she thought my skin might be starting to soften.  She might be right.


I had a question regarding remission.  If the skin softens, it seems (in my online research) that it also means that the danger is past in terms of organ damage (assuming none had occurred yet, which seems to be my case).  Is that true?  If the skin softens, does that mean things are going into remission?  Does that mean I would be out of the woods in terms of organ issues?


What does that mean if I've got more of a mixed connective tissue disease?  Does the myositis part of it also go into remission or no?  What about the Sjogren's?  Or is it just the scleroderma part of things that dies down?


Any info or experience you could share would be great.



#2 miocean


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Posted 07 July 2013 - 03:57 PM



My skin softened but since then my lungs have worsened. 


Another question, once your skin softens, can it harden again?



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#3 Amanda Thorpe

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Posted 08 July 2013 - 03:45 AM

Hello Amberjoile


This can be quite a contentious issue. A former friend (passed away) with scleroderma asked this question during a consultation and was advised that the term remission is not used but rather inactive because scleroderma does not go away but it may not be active.


Skin softening is not an indication that possible organ involvement is over, in my experience. I think any doctor would be hesitant to say the danger had ever passed because scleroderma can be so unpredictable.


I have had large areas of skin affected by systemic scleroderma soften but still went on to have scleroderma affect my heart causing myocardial fibrosis leading to serious heart failure. Other symptoms have also worsened despite skin softening, symptoms such as gastro issues, fatigue, pain, mobility issues, ulcers caused by skin breaking down, incredibly slow healing to name but a few. In addition I have had an increase in areas of skin affected by localised scleroderma.


My guess would be that scleroderma can become inactive but skin involvement is not necessarily an indication of this, certainly in my case it was not. At my last visit to the Royal Free it was decided that my scleroderma is now stable, that's the term that was used which to me means I still have scleroderma but at the moment it's not active.


Hope this helps and take care.

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#4 marsha


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Posted 08 July 2013 - 07:54 AM

Thank you Amanda for answering this. I have wondered this, from what I read and what  a "specialist" has told me recently it seemed I was going to get "all better".  I will tell you my fatigue is off the charts and joint pain and of course the swelling. ERRRG...there is so much misinformation or maybe its just that its relayed wrong. I'm not sure but thanks again for your insight!


Love ya guys,

#5 Shelley Ensz

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Posted 08 July 2013 - 10:03 AM

Amanda, to tweak your line, "it was decided that my scleroderma is now stable, that's the term that was used which to me means I still have scleroderma but at the moment it's not active" -- I think it might be better phrased, "at the moment it is not getting noticeably worse."


After all, you still have all the effects of the cumulative damage for everything that has gone on, and often scleroderma progresses silently, so sometimes damage is accumulating even though we don't feel like we are on another downhill slide. And then again, sometimes it relents and sometimes it even improves a little in some ways but not necessarily in all ways.


Marsha, keep in mind that your specialist's definition of "all better" could be entirely different than your definition. It's easy enough for them to overlook or ignore the symptoms that you have to live with every minute of every day.  They might be looking at a big picture of being relieved that you haven't yet developed x, y or z that they were worried about. They don't feel the fatigue and joint pain so to them those are just words, they are not a reality that has to be coped with all the time.


They might also be comparing you to another patient, perhaps one who just passed away.  Then by comparison you are doing fabulous, simply because you are still breathing! 


The doctor might be trying to say that the worst of getting worse might be over for you and that there are reasons now to be optimistic about your long term survival. That is cause for rejoicing, in its own right, but it does not mean you are better, or cured, or even entirely out of the woods.


Systemic scleroderma is unpredictable. It might ease up a bit, it often becomes stable for a spell, but never enough to allow you to skip out on annual exams.



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#6 Joelf


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Posted 08 July 2013 - 11:37 AM

As Shelley and Amanda have stated, in my case the Scleroderma has stablised; hopefully, my lungs will not get any worse, having made a dramatic improvement when I had the Cyclophosphamide treatment and now I'm trying to reduce the Prednisolone without any adverse effects, whilst still taking Azathioprine.


I accepted the fact when I was first diagnosed that it was for life and that was it, really!! (I'm nothing, if not a realist!!;) )


Kind regards,

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