Posted 14 August 2008 - 01:04 PM
Thanks and warm hugs,
Posted 14 August 2008 - 03:56 PM
That's a good question. I've heard of SD going into remission after 2-3 years, but if you have multiple autoimmune diseases, I'm not sure how it affects them. Maybe someone here has had that experience. Should be interesting to find out.
Posted 15 August 2008 - 06:07 AM
in my case (I have juvenile linearic scleroderma) the disease was in remission for many many years. I was just so small that I didn't realize anything about this back then, but doctors didn't notice any progressing so we stopped traveling to the capital city for check ups. I also quit physiotherapy and everything was fine.
Then last year I started to notice new areas, felt skin getting tighter and started to experience pain on my shoulder blades. I can feel it progressing again and I can see it too.
But they say that sclero can go to a remission almost whenever; it might happen unexpectedly. I've been living with this for 12 years, I've grown up with it, and only now it has started to affect my life.
Posted 15 August 2008 - 07:52 AM
My doctor said the same thing about the 2-3 year period but made reference to the CREST symptoms stopping and evening reversing.
It is what it is...........
Posted 15 August 2008 - 10:44 AM
My doctor said the same thing to me about remission. I have diffuse scleroderma plus 3 or 4 other autoimmune diseases, but she only mentioned scleroderma where remission is concerned. I'm 99% sure lupus can go into remission because my sister had it.
Another thing the doctor said was that having MCTD does have a bright side. They are all trying to fight each other so the problems each of them cause may not be quite as severe as if we had 1 CT (connective tissue) disease. When I see her in a couple weeks, I'll get more information from her (here's where the good ol' memory comes in to play!!! It's NOTE time. )
Posted 15 August 2008 - 11:44 AM
I have diffused SD no vital organ involvement todate. My Sd has been very aggressive, skin score is 40 and I am just approaching the 3 year mark with no slowing down and my mobility in all areas is becoming very limited. My rheumatologist who is considered an expert in SD has said it is time to stop it. I see her in Sept to go on cytoxin for 1 year.
First Sympton Nov/05
Posted 15 August 2008 - 11:57 AM
My rheumatologists use the term inactive and say the disease becomes inactive at some point, 3-5 years gets mentioned also. whether this means you then get thinks back like soft skin, joint movement or stay as is seems to be anyone's guess. My rheumatologist said skin softening is possible but that I may still be left with contractures and immobile joints. Explain to me the point of soft skin if nothing still moves properly!
I presume once inactive you just wait and see what happens next and I think any further activity is then internal.
A friend was told by our rheumatologist not to upset the apple cart so her disease stays inactive but did not expand on what that actually entails.
Seems to be anyone's guess.
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Posted 16 August 2008 - 01:48 PM