Anti CCP 900+!!!: I have been battling my GPs for a... - NRAS

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Anti CCP 900+!!!

I have been battling my GPs for a couple of years now to recognise that my symptoms pointed to an inflammatory condition and they weren't all just down to osteoarthritis and obesity... especially since Prednisolone that was prescribed for a chest infection gave me such significant pain relief as a "side effect"!! Nothing ever showed in my bloods and I was told I had Fibromyalgia.

Until today! Apparently my anti CCP, which should be around 20 was 900+!!! I feel vilified and justified, but also pretty worried. GP has referred me to rheumatologist urgently and prescribed 10mg Prednisolone for now. I have most of the symptoms of RA, but also some of Lupus. Has anybody else ever had such a high result, and what was the outcome? I know we can't second guess but it would be good to know that maybe it's not so bad as I'm now fearing. 😔

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I had the same love x GPS didn’t believe me even tho I could hardly walk!! And when I did I was in agony!! I yelped to sit on a loo as the pain was so bad!! A year down the line I seem to be in a better place x 😃😃 Try and be patient take one day at a time and be kind to yourself ☺️ Once you are on drugs that suit you life does improve xx

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Hi Deb - Wow - That IS a high result. I'm sorry that it has taken so long, and so much, for you to be recognized as suffering. I have not actually seen or heard of one that high, but I'm sure there are other out there. Gentle hugs while you try to get this straight..

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Hi mine was 750 my ccp sero positive but the consultant told me it doesn’t indicate how bad the RA is all’s it proves is you have it and it’s not borderline it’s a definite indication you have RA.

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Yes. I had similar blood test results. Rheumy said hadnt seen such high markers for few years and km sero neg. I so relate to the 'loo' comment above, couldnt sit due to tree trunk legs and pain etc...anyway, 18 months later and shed loads of meds, which i am fortunate no severe side effects if rather unpleasant, I am very close to remission. Its a long road but worth it. So I would encourage you to trust your rheumy but remember its a partnership. I have learnt that from advice I have read on here and found it worked for me.

All the very best and take care.

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I also had a very high CCP level so was started on methotrexate right away. That was in November and when i saw my rheumy in February i was in remission! He was very surprised because he said it usually doesn’t work that well, that fast! But he and I are both thrilled with how I’m doing! I have been basically pain free (except for my right thumb..but only on palpation...movement is fine) since about 5 weeks after starting the methotrexate. And that was after about 8 months of pain in my hands, feet, elbows, shoulder and ankles. So don’t give too much mind to the lab results! :)

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Hi there,

My anti CCP was above 1000 and my RH factor was 127. It’s been 2.5 years since diagnosis and I’ve tried 4 meds and I am now currently on Orencia IV every four weeks previously but now starting every three weeks. It’s been a long process but I have found something that works and I am pleased to say that I have improved about 95%. I work, workout and even started doing a little running. Life is good. Don’t stress about the numbers too much, just work with your Rheumatologist to find what works best for you. Be honest about what your experiencing with the meds as there is many kinds and hopefully you’ll find the one that is best suited to you. Take care😄

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