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Sunshine81

Positive ANA/Centromere/Raynauds

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In 2013, I started having Raynaud's in a few fingers along with a few other things that caused a ton of anxiety and I went to ER who then referred me to a rheumatologist. After a ton of blood work, I was told I had a positive ANA and anti-centromere. I see a rheumatologist every year and nothing has really changed other than some GERD that bothers me on a fairly regular basis. I had an echo and PFT about a year and a half ago and have felt like it seems unnecessary to do it yearly since I have no other symptoms or diagnosis.

 

However, I’ve been reading that I could be having organ problems even if I don’t have external symptoms and now I’m an anxious mess. Wondering what you suggest or if anyone is in a similar situation. It feels like I’m just waiting to get worse and it’s a horrible way to live.

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Hi Sunshine81,

 

Welcome to these forums!

 

Regarding your blood test results, please see our sticky thread here. 

 

Of course it's not beyond the realms of possibility that you could develop "organ problems", but unfortunately without second sight it's impossible for anyone to predict the prognosis of the  disease, or how things will progress for you. Such is the complex nature of scleroderma that it does affect everyone differently.

 

Please note I have no medical training and so I would suggest that if you are feeling concerned you should consult a listed scleroderma expert, to enable you to discuss any further treatment necessary.

 

Kind regards,


Jo Frowde

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International Scleroderma Network (ISN)

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Hi Sunshine81.  My Raynaud appeared in 2015 followed by a Ssc diagnosis and GERD issues in the same year.  Neither seems to have got significantly worse so far, though both are quite unpleasant. I do have problems with stiffness along with joint pains that are gradually increasing in severity.

The reason for the echo and PFTs yearly are to measure any decline in heart and lung function and the results will be measured and compared with previous years results.  One of the things I know they measure is the width of the pulmonary artery, which tells them whether you may have pulmonary hypertension.

 

Provided that the test results are OK, then I would try to stop worrying about it and carry on trying to enjoy life as much as you can.  Nobody knows what the future holds, whether you have Ssc or not.  In some it develops quickly and in others more slowly.  

 

I too was fixated on it, waiting for it to get worse, though did find that many of my problems arose from an initial misdiagnosis resulting in prescribing inappropriate medication and improved when I stopped taking it.

 

Try to live as healthy a lifestyle as you can with plenty of exercise, think positively and make the most of the 10,20,30,40 or 50 years you may have left.

 

I also meant to say that annual kidney function tests are a good idea, though assume that you are having these too.

 

Best wishes and good luck for the future,

Dimarzio.

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