Awaiting diagnosis ... anti-CCP level 900+!!

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I have been battling my GPs for a couple of years now to recognise that my symptoms pointed to an inflammatory condition and they weren't all just down to osteoarthritis and obesity... especially since Prednisolone that was prescribed for a chest infection gave me such significant pain relief as a "side effect"!! Nothing ever showed in my bloods and I was told I had Fibromyalgia.

Until Friday! Apparently my anti CCP, which should be around 20 was 900+!!! I feel vindicated and justified, but also pretty worried. GP has referred me to rheumatologist urgently and prescribed 10mg Prednisolone for now. I have most of the symptoms of RA, but also some of Lupus. Has anybody else ever had such a high result, and what was the outcome? I know we can't second guess but it would be good to know that maybe it's not so bad as I'm now fearing. 😔

I'm also wondering whether to pay for a private consultation with a rheumatologist who also works for my local Health Board, as I've been led to understand there may be a two-month wait. Has anybody taken this route and is it worth it, do they then keep you on their list but under NHS terms, or could I be assigned a different rheumatologist by the NHS eventually? I have found one online that I would like to see and am happy to pay for one consultation, possibly two, but no more. Would welcome any advice about this too.

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  • Posted

    Hi mine was just under 600 I feel for you as felt so unwell. I have taken prednisone 10mg when diagnosed three years ago . I changed my lifestyle. No dairy, no caffeine, no sugar,no alcohol . Drink a lot of water only.Then reduced my physical activity/ use to walk a great deal and started yoga and reflexology. Can honestly say I’m well . I range between 2-4mg of prednisone and have CCP of between 4-11 since. Most of the time apart from tired and hormones affecting it and recognising that . I’m well . I do hope you get some relief soon the 10mg will help a great deal.
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    • Posted

      Thanks Helen, the idea of cutting out sugar and caffeine petrifies me! Were you put on methotrexate? I get so much pain after the shortest walk that I am avoiding it...that doesn't help my weight! I do swim, but more for relaxation. Am learning not to overdo that too now.

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  • Posted

    Hi no

    I found a sympathetic Rhematoid consultant who was happy for me to try diet to help. It honestly worked for me every time I go for my appointment lots can’t walk in unaided and he and the nurse say they wish more would realise diet helps. I had lots of sugar and caffeine before it’s hard but so is being crippled . I’m on no other medication and they are happy for me to continue as I am on low prednisone. Good luck 

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  • Posted

    I’m at all no specialist and can only go on what I have been told by my Rheumatoidist. 

    I too had a high score, (my first ever high score I achieved) jokes aside, I was too battling with different GPs. Until I was lucky enough to come across a GP that had RA. I decribed my systoms and he gave me the blood test. Therefore he knew what was my diagnosis was before my blood results arrived. I can’t remember the exact score but it was extremely high. He then referred my to a private Specialist. Yes I have rheumatoid and I have asked my specialist could it be lupus as it seems extremely the same as RA. He has insured me there is a test on what disease you have. 

    I have been living with severe RA for 5 years and have tried numerous of cocktail of drugs for example methotrexate, Plaquenil, humira and now injections Actemra. 

    I do get flare ups and my specialist now says I have a condition from RA  which is fibromyalgia. I think he really doesn’t know and puts a name on it. My blood tests come back that my RA is under control, however I still get pain. “OH it’s fibromyalgia.” My son is in the medical profession and he says fibromyalgia is a disease they give you when they can’t work out your condition. 

    I have tried all the diets. I really give up. I now have gone back to what I did before. I don’t smoke eat fairly healthy and drink a few glasses of wine a night. I have blood tests ever month checking my liver ect and it’s all ok. I only live with the occasional flare ups. 

    I do think you should see a private specialist to get the necessary medication. I hope I haven’t been too much of a downer and I hope you find someone that can help. 

    Lynn 

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    • Posted

      Hi Lynnie, I have an appointment a week tomorrow and it's with the rheumatologist that I was going to see privately! The GP was right when he said my results meant that I would be seen urgently 😁 This lovely weather has helped I must admit. I was told two years ago that it was Fibromyalgia but was never convinced. Hope you find some drugs that work for you.

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