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JustME

Can CREST change later to Progressive systemic sclerosis?

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Hi,

I was diagnosed with CREST a couple of years ago and I'm wondering if anyone has ever been diagnosic with CREST in the beginning and later got worse and it changed to Progressive systemic sclerosis? I've just started to have some mild Pulmonary Hypertension and was wondering the possibilties of it getting worse.

Thanks,

Kim

California

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Hi Kim,

 

I have CREST as well. You can get pulmonary hypertension with it. My rheumatologist states that is the only thing I should progess to in addition to the possibility of getting skin tightening, which he states in CREST usually sticks to the hands and face. I'm in need of a face lift, so the face part can start anytime! :lol: Actually that is no laughing matter. Anyway, I've heard some doctors say "yes" you can progress to progressive systemic scleroderma and others say "No".


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Kim,

I have had CREST since 1966 - that is I have had the symptoms appearing over the years since then - but in fact I didn't get a diagnosis until 2003 when I had a crisis and ended up in the emergency room.

 

Since then not much has changed except that my esophageal symptoms have become slowly worse and my anal sphincters and rectum have become involved. My Gastro Dr. is starting to query Progressive Systemic but I don't think my blood work has changed much. In saying that, I haven't read my latest blood results yet.

 

As well, I have developed mild Pulmonary Hypertension, but just last week I had a clear Lung CT and my PH seems entirely due to Mitral Stenosis. I would have developed the MR anyway, even without Sclero, because I apparently had Rheumatic Fever as a child.

 

At first we ASSUMED the PH was from lung disease, so unless you have had a proper work up don't assume anything with this disease we have.

 

What I have read says that 40% of CREST people will develop PH but on the other hand 60% won't.

 

Take care, be brave, ask questions, stay warm.

 

Warm windy Hugs from New Zealand.

 

Judy T

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My rheumatologist definitely considers CREST a form of progressive systemic sclerosis, or scleroderma (another term for PSS). CREST tends not to have the quick, whole-body effect of the diffuse form, though it effects internal organs, as with pulmonary hypertension. I have CRST, without esophageal symtoms, but have pulmonary hypertension.

 

The more people that I get to know, especially through our scleroderma support group, the more it appears that the disease is unique to each person, and the old "CREST" term may be too dated a way to differentiate.

 

I tend to think of diffuse as "raging" scleroderma, since it tends to come on quickly, with obvious disabling problems. CREST, for both me and my father, started out as nothing but cold hands for the first decade or two and progressed slowly to be incapacitating. Thus, I think of it as a condition that slowly creeps up on you.

 

Good luck,

 

Craig

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