Very high anti-CCP results : Hello, I hope you are all... - NRAS

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Very high anti-CCP results

temirzhan profile image

Hello,

I hope you are all well.

I want to ask for my Father. He was diagnosed with RA in Dec 2020. At that point his anti-CCP was 256. His ESR and rheumatoid factor were also very high.

He has been injecting Metoject for 3 months now, first 12.5mg, now 10mg. His ESR and rheumatoid factor have now become normal. His haemoglobin is still low and platelets are slightly elevated.

However, he recently took another anti-CCP test and his result was 513. Even higher than baseline.

Is there cause for concern given that his ESR and rheumatoid factor are now normal?

Does he need to increase his Metoject dose to make anti-CCP go down?

Or should we ignore the elevated anti-CCP test as long as his ESR and rheumatoid factor are fine? Perhaps, anti-CCP is not a very informative test for tracking the progress in treatment?

He still feels tired all the time, no energy and can’t walk too far but no strong pain. So no remission yet.

Many thanks I’m advance.

12 Replies

Hi Temirzhan, the anti-CCP indicates that RA is present, the higher the number the more likely the RA will become severe - though it is just an indicator. My own levels are very high but my disease is controllable, so really don't worry about the numbers too much. The medication and the level of disease control they give is the most important factor. Feeling the fatigue badly may well suggest that his RA is not properly controlled yet. For some Methotrexate doesn't do the job on its own.

Hope he soon feels better.

Try not to worry too much, RA is not pleasant but control can be achieved but might take some time.

in reply to Brushwork

Perfect reply Brushwork

temirzhan profile image
temirzhan in reply to Brushwork

Thank you very much for your help and kind words!

Twiggy111 profile image
Twiggy111 in reply to Brushwork

Hello brushwork,Hoping you are still active on this site. I also have positive anti-ccp. What are you taking for meds and are they still working?

Thanks

Brushwork profile image
Brushwork in reply to Twiggy111

Hi Twiggy111, I’m still here.

I’ve been through all the DMARD’s and a few biologics. I’ve been on Tocilizumab for a couple of years now, it really does the job. RA is controlled pretty much, I just get short lived minor flares occasionally.

As with pretty much, all meds, we react differently so finding one that works for you is the key.

Go gently

You do really needs to discuss this with his doctors.

It is not common to do repeat testing of anti-CCP and RF to guide treatment as they are generally just used as diagnostic tests. It does happen, but not often as the presence or absence of antibodies are not great indicators of progress, as so variable between individuals. Did the doctors say why they were doing this?

ESR and CRP, which are the inflammation markers, are the usual way of looking at whether treatment is working. So it is good that his ESR has returned to normal. Was that high to start with?

But the best way of telling what is going on is how people feel! He is on a very low dose of MTX, which could be because of his age - is he over 80? Did he have painful and swollen joints on diagnosis? What were his energy and walking levels like normally? It could well be that if his inflammation was not that high, and his physical symptoms were mild to start with they decided to treat very conservatively and are just using the anti-CCP to double check. You need to ask....

temirzhan profile image
temirzhan in reply to helixhelix

Thank you very much for your advice! He is 69 and was diagnosed four months ago. His joints were never swollen, all fingers are fine. He had pain in his leg, so they checked for RA and discovered it. ESR, CRP, anti-CCP and RF were all very high to start with, at least twice the upper limit. He injected 12.5mg for a couple of months but after his ESR and RF had normalised, the doctor lowered the dose to 10mg. He is not in much pain, just tired all the time and can’t go far. So perhaps he needs to go back to 12.5mg. Or maybe 4 months is still too early for remission? Thanks.

helixhelix profile image
helixhelix in reply to temirzhan

69 is no age at all! So perhaps he needs to be a bit more demanding with his doctors about what kind of quality of life he is aiming for. I spent the whole of the first year constantly asking my rheumy whether this is as good as it gets.. They idea of not being able to “go far” at 69 is awful. If he was 89 perhaps...

Everyone is different but for me my inflammation markers are not much of a guide. They did drop after I started treatment but I still felt rubbish, so kept nagging.

This is early days for him, so a lot of room for improvement but he needs to say so. Often doctors are so busy that they assume all is well - especially if blood test looks good. And we are so polite then when asked “how are you?” will often say something like “oh, not too bad”. Which doc assumes means you're fine, when you actually mean it’s not as awful as it was but I would like to improve more.

Brushwork profile image
Brushwork in reply to helixhelix

My neighbour is in his 70's with RA for over 20 years, he tells me he is in pain, very stiff in the mornings and often very tired. He had been taking Mtx for 12 years and believes it is working! I have suggested that maybe another medication would work better for him but he doesn't want to mess with it. Sometimes, it is about what the patient feels ok with.

However, we can aim for a close to normal life and many/most (not all) can achieve it, with the right treatment plan.

I’ve been trashed for ten years!! I am on Mx 25mg and sulfasalazine 1000 mg twice a day... it may well depend on how severe your RA is. I’m a baby at 52 and was diagnosed at 41/2... My life has been severely compromised.

Anti-ccp is only for diagnosis purposes only. It says RA is here. It doesn't predict disease progress. My anti-ccp is wayyyyyy higher than his (I also have a high Rheumatoid Factor) and yet I DON'T use any meds for my RA. If he hasn't already considered it, an anti-inflammatory diet can be a great complement to his meds. It can bring down the inflammation even more and maybe allow for a lower dosage. If there's one thing I can recommend it's to eliminate refined sugar. But often that's difficult for people. I hope he finds relief

If you haven't already I think ordering the New2RA pack of information for your Dad would be helpful. Also ask the rheumatology team to refer him to the NRAS Right Start service. nras.org.uk/refer-a-patient/ There is a great deal to learn about managing RA when first diagnosed and it is still fairly early on in his diagnosis and may take a little longer to agree the right treatment regime to get his RA under control. nras.org.uk/resource/newly-...

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