Big thanks & somewhat confused!!!!!

Firstly a big thank you to all the fellow forum users for helping me last week. I asked about taking MTX, it was making me feel grotty, many of you suggested that I take it in the evening to try to alleviate the side effects. This week I did and I must say although I still had the side effects it was easier to cope with. So once again a huge thanks.

Now to my confusion!!

As some of you will know I am newly diagnosed. When I read some of the postings I sometimes don't understand exactly what is being said as I don't know all the short cuts to the long medical terms are for example-------ESR. CRP. DEXA. CCP. I have figured some out such as MTX. RHEUMY. & HYDRO.

Also today I received a copy of the letter that my Rheumy has sent to my G P and she has said that ( anti CCP strongly positive ( 340 ) I don't really know what this is or if it is low normal or high, and also it says ' rheumatoid factor negative ' I find it so confusing. Please can anyone enlighten me.

7 Replies

  • There are two "things" in your blood that give an indication of what could be wrong with you. Neither are 100% guarantees that you have RA, and you can have them and not have RA as well just to confuse matters.

    The first is the the rheumatoid factor. This is less specific, so if you are positive for the factor there's about a 60% chance that you might have RA (about 40% of people are positive but don't have RA). But if you are negative it basically doesn't mean anything either way. It's a test that's often done by GPs, and one of the problems is that lots of people test negative so the GP tells them to go away....but they actually could have RA.

    The second anti-CCP test is usually only done by rheumies. It's much more specific so if it's positive then I think it's about 85% likely that you have RA. Anything over 20 is positive, so 340 is a pretty strong clue. There's a lot talked about whether the higher result means that your RA will be worse, but I'm not sure that that holds true for everyone either. So try not to fret about the numbers - anyway they do change over time!

    But the importance of them is that these blood test results, plus your physical symptoms, plus how you feel, should all be used to get to an accurate diagnosis. which it sounds as if you've had? A bit like GCSE's really, in that whether you get an A or a D seems hugely important at the time but once you've passed them then really doesn't make much difference.

  • Thankyou helexhelex for your rapid response. Maybe with my long and numourous questions I may have confused my situation. I have already had the bloods done by a rheumy and she has diagnosed RA. But I have only just got the results in a copy of the letter sent to my G P and quite rightly so said that numbers don't matter but it still confused me can you tell me what CCP is please. Maybe I am getting old and my rheumy told me or too much info to take in at once.

  • It's an antibody (called the anti-cyclic citrullinated peptide). So the same principle as if you have some kind of bug then your body builds up antibodies to fight off that bug. With this one the the theory is that your body develops this antibody in response to the effects of rheumatoid arthritis.

    There is a huge amount of info to take in, so just take it a bit at a time.

  • I agree - it is well confusing, especially at the beginning. Have a look on the NRAS website for: Laboratory tests used in the diagnosis and monitoring of rheumatoid arthritis. If you put lab tests in their search engine it should come up. And is good too. They were the best places for info I have found so far.

  • Do you hold your own drug monitoring record book? Not everyone does, particularly if you have your bloods taken at hospital but if you do you should find all the terms & their normal values explained at the back of the book. If you don't have one I copied them once for another member, if you'd like a copy I'll try & find it & copy it for you.

    A DEXA scan is used to measure the density of bone usually recommended for those on steroids for some length or those with osteoporosis. I have one every couple of years.

  • HI Diddydriver,

    I have put a link to our article on blood tests for you to look at. It talks about ESR, rheumatoid factor (RF), anti-CCP and CRP blood tests:

    I have also put a link to our article about seronegativity and seropositivity:

    A DEXA scan is to look at bone density:

    Some of the tests are used for diagnosis and/or monitoring. When monitoring the condition it is perhaps more relevant to see if the levels are increasing or decreasing as what is normal for one person may be high for another and individual labs as well have different control levels.

    Hope this helps Diddydriver. If you have any other questions please feel free to call the helpline and have a chat with us on:

    0800 298 765 Monday - Friday 9.30am - 4.30pm

    Beverley (NRAS Helpline)

  • Thanks, It would seem that I have an awful lot of reading to do before I can fully understand just what is going on within my body. I feel sure that with the amazing help of the forum I will get there in time.

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