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I have read so many varied things about what percentage of people with systemic sclerosis (either limited or diffuse) get PAH. I have read anywhere from 15% - 65%. That is a big range. Also, the onset time of PAH from diagnosis of scleroderma varies from 1-15 years.


What scares me is that it goes undiagnosed a lot of times and will they catch it early enough. Is the yearly echo and PFT enough? Should I consult with a pulmonologist or a cardiologist or wait until my rheumatologist refers me?


What have any of you read about this or what do the doctors say?



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Hi Kristi,


You are right that it is a wide range - this is due to the disease being so unpredictable. If you are really concerned about this, please talk with your rheumatologist. If you feel strongly about it, he will refer you. Most cardio's need a physician referral. If you have a good rapport with your current doctor, I'm sure he'd be glad to schedule the appropriate testing to put your mind at ease.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Thank you for the response. :)


Sometimes I just get over anxious, and usually it turns out to be nothing. I have to trust my doctors and be glad when my tests come back good. I have to stop second guessing everything or it will drive me crazy!


Thanks again for everyones reassurance and encouragement here.



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