Hi All-
I just discovered I tested positive for the CCP antibody. (35 Units which my Rheum said was a 'low positive') I tested negative for RF factor. No symptoms of RA but have slight osteoarthritis in my hands which is why I saw this specialist doc. Does this mean I am DEFINITELY going to get RA in my future or can someone be CCP positive their entire life & never get RA? I am obsessed with reading articles, blogs, etc & can not get this thought out of my mind. I am terrified! Thank you!
I forgot to mention I am a female and 46 years old.
Hi Ngold,
you may find this interesting reading if you haven't seen it already:
nras.org.uk/laboratory-test...
Regards
Beverley (NRAS Helpline)
It still doesn't answer my question. Is it a definite confirmation that I am going to develop RA in my future based alone on the positive CCP antibody? It looks as though The CCP test has only been around since 2000? Is it possible to have a false positive ? Or does this mean I need to expect an RA diagnosis in my future? Please be honest!
Hi Ngold,
there is more information on this site:
labtestsonline.org.uk/under...
It says:
CCP may also be requested to help evaluate the likely development of RA in patients with an undifferentiated polyarthritis (those whose symptoms might suggest but do not yet meet the full criteria of RA). The reason it is useful in difficult clinical presentations is that CCP is a more specific test for RA then the traditional RF. According to American College of Rheumatology, approximately 95% of patients with a positive CCP will develop RA in the future.
CCP antibodies are much more specific for diagnosis of RA, meaning that if present they are more likely to indicate the presence of RA.
However, CCP may be less sensitive than RF, resulting in more false negatives, and hence RF remains the first-line autoantibody test.
Beverley
The anti-CCP test has a sensitivity of around 65-75%, which is the percentage of results that will be correctly positive. Tests with lower rates of sensitivity will produce more false negative results.
It also have a specificity of around 95%, which is the percentage of results that will be correctly negative. Lower rates of specificity will produce more false positive results.
So it doesn't often produce false positives - sorry! But mine was 340 when diagnosed, so 35 is really quite a weak positive. The research Beverley quotes that says 95% of people with positive anti-CCP go on to develop RA is quite old, and doesn't factor in the potential for lifestyle changes to keep it at bay.
I can imagine it feels frightening, so better to talk about it than let it fester. I've read a lot of research etc about RA since I was diagnosed 6 years ago, and I think you could consider this a wake-up call. It seems that a lot more people have the genetic markers than actually have active RA. The theory is that as well as the predisposition you also need a trigger. And triggers can be physical, like smoking as there's a strong link between smokers & RA, or emotional like stress, or environmental factors like bad diet.
So try not to let it frighten you, but maybe think about cleaning up your life. If you smoke, then stop. If you're overweight try to work on that. And if you eat a rubbish diet try to improve. My favoured approach is the "eat, not too much, and mainly plants" but don't torture yourself with being too extreme as the stress won't help! And if you do have a high stress life, try to tackle that too.
And also do bear in mind that if it does get triggered you will be able to tackle it very early on, and anyway for most of us who respond well to treatment life with RA is really quite manageable. It is only the minority of people now who are unlucky enough to have the most evil & unmanageable RA. So try not to fret too much.
@helixhelix: Thank you SO much for your response. Everything you said is exactly what I am holding on to to avoid a diagnosis. Could it be possible that someone could be born with the positive antibody & can live their entire life without ever knowing they have this antibody and never get RA? This has been a huge wake up call for me. I was an avid athlete who worked out for 2 hours a day 6 days a week but got divorced and my lifestyle has changed drastically. I returned to the workforce while being a single mom of two very young children then got laid off from my job last year. I have been searching for a job for 12 months (still unemployed) and had to sell my home of 14 years. The stress I have gone through has depleted my health as I turned to cigarettes, lots of wine, & too stressed to exercise (& too poor for a gym membership now!) Being told I have a great likelihood of developing this disease has been a big eye opener. I will never touch another cigarette & although I eat pretty healthy, it makes me think twice about reaching for an Oreo. From my obsessive research about this disease it appears a clean diet & a healthy gut can prolong the disease. Thank you for commenting and leaving me with a positive feeling.
I would have thought it's entirely possible that there are people around who are anti-body positive and don't know it, and don't have active disease. It's not something that's routinely tested after all. And even if it is right that 95% of people with positive anti-CCP go on to develop RA (which I am cynical about), there's nothing to say you can't be in the happy 5%. And that's the thing to aim for.
But don't go overboard tho' about healthy living, all too often people set sights too high and can't achieve them and crash & burn. Smoking is the most important one, so start on that and work forward. In a year's time you'll have forgotten how worried you were and just be living a healthier, calmer life. Good luck.
Guess it all depends. I am not positive for the ccp antibody but was for the rf antibody so it's not even and indicator in every insividual. Like you I went into a full blown tizzy following a divorce. Last year I took a promotion that just amped up the stress and started this ball rolling although I've had psoriais for years and years suddenly I could barely walk with achilles tendon issues. I too have gained wait, am not working out as I was, etc. Since stress is my huge trigger I have no clue how to manage it since it's job related and as a single parent changing that is not an option since I can't take the hit in income to do so. I do now wish though I had never taken the promotion and kept the job that was far less stressful but there is no going back.
Hopefully things will get easier one day soon. Lots of prayers.xo
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