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Peggy

Remission?

8 posts in this topic

I was wondering if anyone else's doctor said anything about this disease going into remission. Mine said that after the onset usually 2/3 years later it goes into remission. If so, what about the 5 other autoimmune diseases that I have too - do they go into remission also? What does she mean by remission? Will all of the symptoms subside and when do they come back?

 

Thanks and warm hugs,

 

Peggy

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Peggy,

 

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.

 

 

Razz

:)


Live well, Laugh often, Love much

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Peggy,

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.

 

Take care,

Emmi

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Peggy:

 

My doctor said the same thing about the 2-3 year period but made reference to the CREST symptoms stopping and evening reversing.


Tru

 

It is what it is...........

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Peggy,

 

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. :lol: )

 

Take care,

Christy


Love makes the world go around!

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Hi Peggy,

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.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hello All,

 

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.

 

Amanda


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)

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Mine has never said it would go into remission, but he did say that if a person reached the 5-6 year mark with very slow or minimal progression, that was a good indication that a person would stay at about that level without progressing much past that.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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