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Anyone Anti-PM/Scl positive?

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#1 delilah



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Posted 16 July 2014 - 07:03 AM



I am female and in my early forties. Last summer my proximal interphalangeal joints (PIP) joints on my pinky fingers started getting sore. I also have trouble swallowing but that has been for 10 plus years and I have had  an endoscopy as well as manometry a few months ago which both came back normal.


Long story short I was sent to a rheumatologist for the joint pain. He ran my ANA which was 1:80 nucleolar...so barely positive. He ran additional antibody tests and I actually had 2 come back positive. Anti- PM/Scl and Anti-fibrillarin/u3rnp which was mildy positive at 5%. I have no other symptoms. No Raynauds or skin symptoms. I had a 3 month follow up with him and my ANA was negative when tested this time. However, I asked the rheumatologist what the positive antibodies meant and he said I might never go on to develop a disease and to only see him again if I develop rashes, skin symptoms or Raynauds.


I guess this is a wait and see if I'm a time bomb sort of situation. To anyone with a positive Anti-PM/Scl how did you symptoms first start and what was the time frame like?


Thank you.

#2 Joelf


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Posted 16 July 2014 - 10:42 AM

Hi Delilah,


Welcome to these forums!


It's always difficult to obtain a diagnosis of Scleroderma on the results of positive blood tests alone, as it is perfectly possible to have positive anti-bodies for Scleroderma and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Your rheumatologist has probably given you good advice, suggesting that you pursue a more definite diagnosis, should you develop other symptoms.


However, I am able to give you some first hand advice regarding the Anti-PM/Scl antibody, as I have tested positive for it myself. I had Raynaud's for probably three or four years before other symptoms of Scleroderma manifested themselves and it was only when I presented the classic symptoms of interstitial lung disease that further investigations were made, which resulted my obtaining a diagnosis of Scleroderma and receiving treatment pronto! Although the Anti-PM/Scl antibody can be a sign of Polymyositis, thankfully to date I don't appear to have developed it, which proves the point that antibodies are only half the story. I had been feeling generally very poorly and unwell (most unlike myself!) for at least a year to eighteen months before the lung symptoms and also had various problems like Carpal Tunnel Syndrome, swollen fingers and painful joints.


I would emphasise that this bizarre disease does affect everyone differently and so although I do have the Anti-PM /Scl antibody, it doesn't follow that you will necessarily develop the same symptoms as I did and obviously I can't say whether or not you will get the full blown disease, but hopefully, you will continue as you are at present.


Kind regards,

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#3 Amanda Thorpe

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Posted 17 July 2014 - 01:48 PM

Hello Delilah


Welcome to the forums.


Have a look at our videos about diagnosis of scleroderma and difficult diagnosis in scleroderma, the function of the blood test is to support a diagnosis/support ruling one out, they should not be used in isolation to do either. Not only can antibodies change, as you know, but it's possible to have scleroderma with negative antibodies as well as having positive antibodies but no symptoms...ever.


I have systemic and localised scleroderma but my antibodies have always been negative. Based on this I was told it was unlikely I would ever develop internal organ involvement, about 12-18 months after this glib reassurance I not only had internal organ involvement but was life threateningly ill.


Scleroderma should be diagnosed using clinical symptoms, medical history, perhaps biopsy but not just on the results of blood tests.


Try not to think of yourself as a ticking bomb, you may not even be ticking.


Take care.

Amanda Thorpe
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