Low positive CCP at 23 no RF

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My reaummy thinks I have probable RA has anyone had such a low CCP with RA? I have stiff burning body and a little swelling on left knee

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  • Posted

    hi Emily.

    just read your post. fascinated with the lingo. had RA 25+ years. havent a clue what CCP is. is it important? my advice is don't worry about such things. let rheumy do that. that's why he's there. enjoy your life. RA isn't the end of the world. take care Emily and all the best for the future. ivan.

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  • Posted

    It is possible to have something called sero-negative RA - even a positive anti-CCP doesn't mean you necessarily have RA. You can be negative and have RA or positive and be perfectly healthy. And negative doesn't mean nothing is found, it just means low.

    Unfortunately I can't give you the direct link here but a very good rheumatology site, the National Rheumatoid Arthritis Society, says:

    "The blood test that is ordered by the doctor in order to help establish the diagnosis of rheumatoid arthritis (RA) is looking for the presence of two proteins in the blood. One of them is called rheumatoid factor (RF). This is a very old but tried and tested investigation that was first introduced into rheumatology in the 1940s. The other test is called anti-CCP and is more recent. Anti-CCP is more sensitive than RF and may appear much earlier in the course of RA.

    The presence of either of these tests may indicate that RA is present. However seropositivity is only one criterion of several that makes the diagnosis of RA likely (some of the other criteria are outlined in the next section). If the other criteria for the diagnosis are present then seropositivity is an additional clinching factor. A positive anti-CCP test is marginally stronger than positive RF test for the diagnosis.

    A positive RF or anti-CCP test does not mean that you have RA. Other features must be present such as symptoms of pain and swelling in the joints, involvement of many joints with inflammation, morning stiffness in the joints for longer than 45 min, x-ray evidence of the characteristic bone damage in the joints and extra-articular features of RA (meaning features that are outside the joints), such as nodules. Other blood tests commonly used prior to diagnosis include ESR and CRP, which measure the amount of inflammation in the joints. For more information on blood tests please see our article: ‘Laboratory tests used in the diagnosis and monitoring of rheumatoid arthritis.’ "

    Hope this helps.

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  • Posted

    Hi Emily,

    yes all my bloods have been 'normal' but I have been diagnosed with RA - it is called seronegative RA which you can research.  Mine has come on suddenly and very severely this year, and I am on methotrexate, prednisone, anti-inflammatories, and panadol, and still not ok yet.  At least I can walk -and work- now.  There is lots of hope for much improvement with drugs and it is best to get onto treatment because the earlier you do the higher your chance of getting a 'remission' and avoiding wrecking your joints for the long term.  It is just a sad time of readjustment I think.  All the best. 


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    • Posted

      Hi :-) ,

      the prednisone (steroids) made the most difference to my movement (I only started in Feb with two sore knees but quickly went to wrists, elbows, feet, ankles, neck, jaw, fingers, shoulders).  You can't stay on these at a high dose for a long time because they wreck you but they make you feel so so much better.  I was a runner and surfer, running 25 km a week and surfing 3-4 days.  I have found a group of runners with RA on Facebook and the general consensus is that it seems to take a year or two to find the drugs that work for you.  My Rheumatologist says they are aiming for us to feel 100%!  I have read several very positive stories about all the different drugs.  I think the 'biologics' are supposed to be best?  but in NZ where I live, you can't go on them til you have tried and not done well on everything else, which takes over a year.  Methotrexate is working a bit for me, only maybe 50% so I think next step I get more drugs added. Have you been given much info?  There are some great stories out there about people doing well, travelling overseas, sky-diving, having kids, etc.  Once the right drugs are found for you.  Plus I do think they are discovering new and amazing drugs/cures all the time and we have many years of life to come so there is much hope. 

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    • Posted

      Thanks for your reply, you sound like me I was so fit and healthy. I eat well, walk and jog far regularly and never stop....ive just had a baby too .... Best of luck hope you are 100% soon, it sounds like you have a good ruemmy too xxx
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