docmartenmom

"Pre-Scleroderma"

5 posts in this topic

Hi Everyone,

 

I was doing my usual online perusing and came across a medical write up that referred to "pre-scleroderma," a condition lasting up to 10 years until actual scleroderma kicked in - it was a research study. Has anyone on this board heard of pre-scleroderma? - Lori

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Hi Lori ,

 

Pre-scleroderma was something that the Sclero specialist threw out at us when my son was first diagnosed at age 18, 4 years ago. He started with a + ANA, speckled pattern/diffuse, + Anti-RNA Polymerase 1/111, a 20 percent weight loss, major fatigue, esophageal dysmotility, restrictive lung issues due to costochondritis. BUT he had no Raynaud's or skin issues needed for the sclero diagnosis. Sine Scleroderma is very rare and he eventually received the diagnosis of UCTD. He was started on Plaquenil 9 months after diagnosis and is doing well, although he has now developed Raynaud's and dry mouth/eyes. To me, it really doesn't matter as long as they continue to treat the symptoms that arise. All of his specialists know his history, know of the possibility of Scleroderma, and treat him accordingly.

 

Take care, Everyone.

Margaret

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Hi Lori

 

I also learned along the way that it could sometimes take up to 20 years for an autoimmune issue to reveal/manifest itself in some instances (on Mystery Diagnosis if I remember right).

 

I could be wrong but perhaps that particular study just put the pre- in front of it because it took that long to actually diagnose the problem? Maybe they couldn't define it until the bloodwork showed up 10 years later although the people in the study may have had all kinds of 'things' going on for the first 10 years, which of course takes us back to only knowing parts of the puzzle during our initial journey. Just a thought.


Sending good wishes your way!

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I've never heard of it but I'm not surprised.

 

I have had Raynaud's ever since I can remember, then fatigue set it early in college.

 

And then my 3rd year in college I was finally diagnosed when the fatigue became unbearable and I started noticing calcium deposits and little red dots all over the place.

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I've just read your replies and it really is a maze trying to get a final diagnosis! I think you're right that it's probably the time period leading up to actual diagnosis time - I was diagnosed a little over 2 years ago with Scleroderma. As time passes, more and more diagnoses are added onto it - sounds like what most everyone else here is dealing with. bless us all ~

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