On Cimzia, CRP/ESR now near normal, so why are all my joints worse than ever? Anyone else had this?

In spite of good blood results for the first time in 15 months, RA is more active than ever, I feel really poorly, pain, swelling, stiffness, muscle weakness, mobility are all increasingly bad. Wondered if anyone else had had a similar experience? And is it likely to improve anytime soon?

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  • Hi Sailaway - so sorry you are having to bear this amount of pain - it must be hellish.

    I can't answer your question at all re Cimzia but I thought I'd just tell you that my ESR is pretty high at the moment - it's varied from between 40 and 65 over the past few months and averages at about 58.

    I am in the opposite place to you because I have very little pain currently. I asked my rheumy how I can have next to no joint pain and yet have relatively high ESR readings like this? He told me that although inflammatory markers often tarry with swelling and pain - when they don't we should take the swelling and pain as the main guides over the inflammatory markers.

    I'm afraid I'm none the wiser about where that puts you or where I stand either because it seems rather sinister to be the other way round to be honest - but I'd rather my doctors trusted the pain than the bloods if they don't match up.

    It appears that the Cimzia is not actually working for you and I just hope you have a rheumatologist like mine, who trusts the symptoms over the blood results. Take care and I really do hope things improve for you soon. Someone did put a link to my question about the ESR so if you look at my questions you should see it a few times back and be able to follow the link and read about how this can often be the case (re active disease with low ESR and CRP markers) Tilda x

  • I found it for you and Feather takes the credit for finding it for me!

    17 Jul 2012

    I checked out RA Warrior, a lot of scepticism there about ESR & CRP as indicators of disease activity. Found a link to an article that suggests not just that low ESR & CRP aren't good indicators of remission but also that high values can occur when disease is inactive: jrheum.org/content/36/8/156...

  • Hi Sailaway

    Sorry to hear of your situation. I have been on Cimzia for nearly two years and it was great until March this year, when I had increasing pain and terrible fatigue. The ESR and CRP were fine and my rheumy gave me a general steroid injection after I made a huge fuss. Unusually this made no difference, but she also put me on Hydroxychloroquin with the MTX and Cimzia. A month later I was a bit better, but my bloods showed I had had an infection of some kind. I had no symptoms of infection apart from the RA flare. The ESR and CRP had gone up by then. Now I'm better than I've been in ages. Clearly the infection has gone and I presume the Cimzia is still working. I'm hoping to stay on Hydroxy and come off MTX since my dose makes me terribly nauseous, but I also hope to stay on Cimzia, which is so much easier to inject than the Enbrel I was on before (Enbrel stopped working after 2 years).

    I hope there is some simple explanation for the problems you're having at the moment. It was terrible to be feeling so bad with no blood indicators; I though I would never feel better.

    I do hope and pray you'll feel better sometime soon.....

  • I have monthly blood tests and ESR is always okay no matter how I feel - in pain or not. Check with your rheummy department if you are worried

    Sally

  • I am on Cimzia which has been very successful in bringing my RA under control but I am the same as you, my joints have been aching and painful for the past few months.

    I believe it is the weather. I find that if there is a lot of moisture in the air, either rain or high humidity, my joints ache. With all the rain that we have had I have been in agony some days even though my inflammation is quite low.

    When we had the week of fine weather recently I noticed that after a couple of days I felt a lot better, in fact back to the way I should feel on Cimzia.

    Perhaps this is what is happening to you.

    Jo

  • Thank you so much for all your replies, it's fantastic to have this support! It's good to hear your real experiences. Have just seen my GP who took urgent bloods, he thinks it's simply the disease being active but wants to check there's nothing else going on (reaction to Cimzia, infection...), so we'll see.

  • So, have seen my GP & Rheumatologist - what's happening is that the disease progressing in spite of the aggressive medication regime, no drug reactions and no infections are showing up. It would be worse without the mtx, Cimzia & Celebrex so I'll keep taking them and hope they stem the tide. I'm just grateful that I have access to doctors who listen to me and work with me as a real person, and it's good to have this community to let off steam with!

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