High Anti CCP

Nervouskuz Member Posts: 3
edited 28. Nov 2023, 14:08 in Living with arthritis

Hi everyone!

On Weds my Gp informed me my anti CCP came back at 340, which is the max level the test gives. She has told me that combined with the symptoms I have- pain swelling in fingers, wrists, feet & knees since Dec, that I have RA. I’ve been referred to the early arthritis clinic.

She advised me to speak to work & inform them which I have done. But now I’m panicking this is too premature? She said the official diagnosis has to come from the Rheumatologist. Is it likely that this one score could be wrong? I tested negative for RA & the inflammatory test was on the level between high and normal. Is a high anti CCP always RA?

Also I’m struggling to come to terms with the possibility of RA, and just how it will impact my life. The flares since they started in Dec have been so hard to manage and work through, And the fatigue I’ve been experiencing is now explained, but so hard to manage. My husband isn’t the most supportive, we have 8 year old twins and I work full time as a TA. I just don’t know how to manage the good days and the bad?

Thanks in advance and I’m sorry I’ve waffled! X


  • anneb82
    anneb82 Member Posts: 317

    Hello @Nervouskuz

    Welcome to the online community and thank you for joining us.

    So you have been advised by your GP that you have Rheumatoid Arthritis (RA) after scoring a 340 on a anti CCP blood test. You have swelling and pain in your fingers, wrists, feet and knees which has been there since December. You have been referred to the early arthritis clinic. You were told to inform your work, which you have done, but are worried that you should have waited until you had seen a rheumatologist and had the diagnosis confirmed. You have previously tested negative for RA and the inflammation test was on the level between high and normal. You are wondering if a high anti CCP test always means RA. You feel like you are struggling with the diagnosis, especially with how it will impact in your life. You have a husband, who isn't the most supportive, twins that are 8 years old and you work full time as a TA.

    Firstly, welcome to the RA club! I am also a fully fledged member so can completely emphasise on how you must be feeling at the moment. It is a very scary time on its own, let alone when you have to deal with everyday life as well. It sounds like you are overwhelmed with this news, which is completely understandable. There is no timetable to how quickly you have to accept what you have been told so don't punish yourself with expecting to have it all together.

    Things have change somewhat since I was diagnosed, but I think if your numbers are that high and your GP is referring you to that clinic then it is probably more than likely that you have RA. I'm sure other members will be able to give you some feedback on how they were diagnosed as well as any tips that they may have picked up along the way.

    I know it is a time of uncertainty for you but the good thing is that once you have seen a rheumatologist to officially confirm the diagnosis, they will be able to treat it. Most people find that they can keep it relatively under control with medication and maybe some changes to your lifestyle but it will come with time. I'm not going to lie to you and say everything is always great, because it isn't, you will have flare ups at time, you will find there are things that you aren't always able to do or that you need to adapt in order to do some things but you will learn what works for you and most importantly, you will get through it!

    I appreciated that your husband may not give you the support that you need at the moment, but you will always have us here in the online community to offer support, answer any questions that we can and be here if you just need to have a rant.

    Below is some information that I think you may find useful to have a read of. There are plenty of other bits and pieces on the main Versus Arthritis website and you may find it useful to have a look at the Newly Diagnosed section as it is very informative.

    Please do let us know how you are getting on and if you have any other questions than don't hesitate to ask. We are always looking to make new friends here on the online community so please do continue to stay involved.

    Take care

    Anne (Moderator)

  • Nervouskuz

    Thank you for Your reply.

    I am a worrier by nature, and I think because currently I have minimal pain, in my head it’s all a fuss over nothing, despite having been in considerable pain for most of the year so far!

  • JenHB
    JenHB Member Posts: 137

    Hi, I was initially referred to rheumatology last October as I had a very swollen knee so had gone to a sports physio who wrote to my GP and told them to do bloods. This showed high rheumatoid factor. At my first appointment, they drained the fluid and gave a steroid injection into the joint which seemed to calm things down for about 3/4 months. At this stage they were 'watch and wait' as it wasn't acting like typical RA. Then my knees were getting stiffer and the middle knuckle on my right hand became swollen. I've not really had any pain, really just some stiffness. They have now repeated the bloods and I've been on MTX for six weeks now. I used to do a lot of running and they are quite positive that once it is controlled by MTX I should be able to be as active as I want - I have now gone back to run-walking round parkrun each week. Hope this helps!