Anti-CCP testing

Nicchick
Nicchick Member Posts: 191
Hi!

After a bit of advice about anti-CCP testing and I've drawn a blank with google...

After the meeting at the hospital on Friday during which I was supposed to get some answers to questions about my treatment - apart from saying 'sorry' repeatedly and passing many to my new consultant I didn't get much out of them apart from an admission of inaccurate note taking which they are in the process of amending. One thing that I particularly wanted to know was why I had only recently had an anti-CCP test as in the NICE guidelines it says that if there is inflammation and the Rheumatoid Factor test comes back as negative then it should be done. They couldn't say why I hadn't had it apart from saying that it may not have been a common test in 2009 when I was referred and tested.

I've been trying to find out when the practice of following up a negative RF test with an anti-CCP one was first recommended.

Any information or advice would be most appreciated!

Cheers, Nicchick

Comments

  • helpline_team
    helpline_team Posts: 2,765
    edited 30. Nov -1, 00:00
    Hi Nicchick

    The only information we have on CCP tests in relation to the RF test, is from an article in Arthritis News from 2008.

    It says that 'CCP is a relatively new (and more expensive) test that can detect RA more reliably than the RF test. It is sometimes done if the result of the RF test is negative and you have other symptoms of arthritis'.

    For more information on the different blood tests see http://www.nras.org.uk/about_rheumatoid_arthritis/the_inflammatory_arthritis_patient_information_pathway/step_4.aspx.

    Sorry we cannot be more specific.

    All the best

    Nick
    Helplines Team
  • Nicchick
    Nicchick Member Posts: 191
    edited 30. Nov -1, 00:00
    Thanks!

    I'm thinking that their argument for not testing is pretty weak given that I have been flaring for most of the three years since referral and going through my notes it's obvious that each particularly bad episode has always ended in a course of steroids calming it down slightly.

    I've been flaring since February and it's so bad that I'm currently having difficulty walking, dressing and am so dosed up on tramadol I keep forgetting what I'm doing.

    I seemed to have received the minimum level of care according to their guidelines. If I had been tested sooner then I feel my treatment would have been better - the assumption has been made that I only have PsA and this appears to not be the case after all.

    I heard that the test is about 30-40 quid. Seems disgraceful that I may have to stop working for the sake of such a relatively small sum of money and the amount of time I am now having to spend at the hospital!

    Thanks for your help, I've been assured of better treatment from now on....

    Nicchick
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Nicchic

    Not sure if this link would help you, issue date February 2009:

    http://www.nice.org.uk/nicemedia/pdf/CG79NICEGuideline.pdf

    Look at Page 10, 1.1.2 Investigations

    Elna x (forum member)
  • Nicchick
    Nicchick Member Posts: 191
    edited 30. Nov -1, 00:00
    Thanks Elna!

    I had a printout of that with me at the meeting and all they kept saying was 'sorry' the Matron didn't even know what CCP was and struggled with a lot of the terminology...

    Thanks again for seeking that out for me, Nic x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    :lol: Nicchick. Good for you for having this printout. WHAT! The matron did not even know what CCP was????? Frightening, isn't it? We put ourselves in their hands, trusting these medical people and sometimes have to suffer unneccessarily because of their shortcomings.

    So you are assured of better treatment from now on. Too right, A**** treatment, more like.

    I wish you well.

    Elna x

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