high Anti CCP result - lupus plus Rheumatoid too?

I had a new rheumy who did full set of bloods (9 vials no less!) as an mot. I've had Lupus diagnosis for few years. My joints seem to be crunching badly and hands hurting. While seeing my endocrinologist last week about my adrenals he mentioned my bloods for the Anti CCP test was 129, whereas range is 0-20. Apparently that is very high and indicative of aggressive rhuematoid developing. My back is killing me at the moment but I'd just put it down to lupus. Anyone had this?

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  • I had a DVT in 2008. With it came a lot of blood tests and the only result was a high anti CCP test. I was put on Warfarin and Plaquanil to prevent the RA . I still have had no symptoms of joint pain but they say I have 99 percent chance symptoms will come. Don't know if the Plaquanil is keeping it away. I have not been off it since. Right now I have more symptoms for Hughes syndrome than anything else, but do not test positive for it. Doctors also mention it could also be Lupus but I don't test positive for it either. So I just treat the same until I get other symptoms.

  • Hello! Thanks for replying. Well unfortunately I have loads of joint pains but thought it was because if lupus or hypermobilty syndrome. Have they done all the anti phosliphid tests on you? I recently got told to take warfin but scared about my bones. Steroids have reduced my bone density to osteopenia.

    I'm pleased you don't have joint pain. What was your CCP reading and how old were you when diagnosed? I'm already on plaquenil so that's one good think ! X

  • I believe it was 79. I was 44 at the time.

  • Thank you. Hope you remain pain free & in good health! X

  • I forgot my rheumatoid factor was positive also. Dr. Said that makes a difference in me having greater chance that the RA is definitely there. I hope your joint pain improves.

  • Thanks so much. My rheumatoid factor was positive too, but wasn't particularly high. I'm seeing the rheumy in 3 weeks and hopefully he'll have some suggestions as to how to minimise it. Xx

  • Hi behappy1. Curious what rheumy told you about high CCP. I am in same boat as you. High CCP (153), little symptoms and on Plaquenil.

  • Hi Onslow

    I was told it's early onset of rheumatoid and that the treatment is plaquenil and another immune suppressant like Azatheoprine or methotrexate. Told to start now to prevent disease becoming aggressive.

    Do you have a rheumy appt to discuss yours? You do need to see someone! )

  • Hello,

    Yes - I have been to rheumy. Have been on Plaquenil since early July. I have follow up appointment next Monday. It is very scary what future will bring. How are you coping with this? Have you heard anything about prognosis for people like us with the anti-CCP and have taken Plaquenil to prevent disease from progressing?

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