ESR now 40, still no GCA symptoms

Further to my question 9 April, ESR readings are still going up, 39 & 40 this week (CRP 7.7) they've increased since 4 Mar @ 15 whilst staying on 12mg Pred. After second reading on Friday, GP has upped me to 20mg until I see her again in 2 weeks time. Last time I was on that dose was Oct last year, reduced steadily 17.5 in Nov, 15 in Dec, 14 beg of Jan, 13 by end Jan and 12 on 15 Jan. had antibiotics in January for chest infection, but ESR didn't rise then. Have had cough since then, so went for chest X-ray on Friday. No other infections, kidneys tested recently. As I said before, have felt fine in self during this unexplained rise, so any ideas what could be causing it. Have already lost one eye to GCA so am ultra aware of any unusual head pains, but have absolutely nothing. Both I and GP are flummoxed on this one, and also she says the symptoms are moreimportant than the readings she is also being extra cautious as she missed original diagnosis. Any comments most welcome, thanks as always, Dorset Lady

11 Replies

oldestnewest
  • Hello Dorset Lady

    Well, not being doctors, it's purely guesswork on our part but as you say you've had a cough since your chest infection in January, then it does seem that you might still be harbouring a bit of infection in that area. Perhaps the chest X-ray will show up some left-over infection in which case perhaps a further course of antibiotics might be the answer. I remember long ago when my son was a youngster suffering from a chest infection (as they do!), following antibiotic treatment he was still not right so an X-ray was arranged which revealed a shadow on his lung. He was treated with a further course of antibiotics and completely recovered. I hope it resolves that easily for you. Good luck and do let us know.

  • Hi Celtic,

    Thanks as always for answer. Yes I am hoping its as simple as that, but won't know for a couple of weeks, so fingers crossed. Dorset Lady

  • ESR can be a bit unreliable as it only indicates inflammation is present somewhere but it does not help to pinpoint the problem and in many cases the reason behind a high reading never becomes clear.

    I have a number of co-existing conditions and as a result my ESR is never below 70 and is so ESR no longer considered a reliable indicator. We look more to symptomology and other supporting evidence.

    Its hard I know, but if you are self aware and vigilant and your GP is keeping an eye on things then I would try not to worry TOO much. I hope things settle and/or you get the answers you need.

  • Hi iforget

    I think you're right about ESR being unreliable, but if it is then why do the Medicos put so much faith in it? Doesn't help the patient does it? I'm trying to stay positive, and this forum does help in that aspect. Many thanks for your support & guidance. Dorset Lady

  • Hi Dorset Lady

    I talked to my doc about this ESR business a little while back. She says many docs are becoming reluctant to even test ESR now as it isn't always helpful and can raise patient anxiety levels unnecessarily. But that said in a usually healthy individual repeated high levels can be a sign there is A problem that may need further investigation ..but of course it does not suggest what that problem might be or necessarily guide the type of investigation required, especially in cases of non-specific general malaise

    While ESR alone is unreliable, it can still be useful in combination with other indicators. At the end of the day YOU are the best judge of what feels right (or not) within your own body and if you are unsure seek further information.

    Dis-ease does what is says on the can and makes us uneasy... I too am glad that there are forums like this where we can turn for support and information form others. Hang in there xx

  • Hi,very strange ESR,s mine is hovering tween 50 and 75 the last few weeks,still on 30mg,s of preds,no symptoms regarding mny GCA thank god apart from my backache and i,v had that since last September,you can not rely on ESR,s and the hospital told me that for my age my ESR,s should be round about 50 in any case, I,m baffled, are you feeling OK?I am at the moment, kind regards Anne (ritter)

  • Hi Anne,

    Yes I'm feeling good at present and have been for the last couple of months, so good that I have given myself backache from too much gardening! As everyone seems to say, just as you are getting used to this disease, it throws something different into the mix. When I was diagnosed with GCA my ESR was 68, and everyone went into a panic, but that was probably due to symptoms more than the reading. The trouble is, I think, that nobody seems to agree what a "normal" reading should be. Thnx Dorset Lady

  • Hello again Dorset Lady

    I so agree when you say that "nobody seems to agree what a "normal" reading should be" with regard to ESR.

    What might be a "normal" ESR for some might be quite different for others and I used to wonder whether the high dose steroids lowered my ESR to unnaturally low readings for me (on one occasion my ESR stood at 4!). After all, few of us know what our ESR readings were when we were well before we succumbed to PMR/GCA.

    However, it is accepted that our ESR rises naturally as we age, slightly more in women than in men, and one method is to take your age, add 10 and divide by 2. So for a female aged 70, adding 10 and dividing by 2 gives an ESR of 40, therefore it would seem that anything up to 40 for that age group could be accepted as "normal". Bit in line with what the hospital has told Anne ("ritter").

  • hi,

    i am suffering

    from gca(temporal arteritis)since around april 2011,,when i was in usa.

    my esr was 184 and it was confirmed by biopsy.starting dose was 60mg prednisone.

    i am still suffering from this and there appears to be no sign of abatement.doctors say that it may get cured in 3 years time or may continue for lifetime.i hvae had to undergo cataract op,of both eyes within 1 year of the onset of gca.

    my esr comes to about 20 whan on 60/50mg

    however as soon as i come down to 20 mg esr goes up to 40/50.pain in the temple area,restlessness,short temper,laziness also begin.

    thru trial and error i now immediately go to 60 for 3 days and then gradually reduce in 10/5 units(prednisone).

    as others here have said, doctors are not clear in the matter.

    i do feel that there would not be any harm in taking prednisone of higher doses in consultation with the family doctor.

  • Hi Dorset Lady

    I'm not sure what my ESR is. I am due a blood test. However, three weeks ago I changed what I ate to leave out all the inflammatory foods. I just have a list of inflammatory and non-inflammatory foods. It looked a bit drastic when I started but within 24 hours I felt a bit better. Now I feel like a different person. I haven't felt hungry or missed the foods I can't have. My GP checked the diet and his only comment was 'no dairy' and possible lack of calcium but then as I take Calceo + Vit D he said that was fine.

    I am still on 7.5mg of Pred and will continue to reduce by .5mg per month which means another 60 weeks at least unless I have a flare up. It is difficult to explain what exactly feels different. I didn't think I was depressed before but I definitely feel so much more cheerful than I have felt since I was diagnosed in Nov 2011.

    It might be worth talking to your GP about diet?

    Good luck, Penny

  • Hi sorry you are having problem ,ESR and CRP does seem very high ,and understand how you must feel having lost one eye ,as i did due to GCR [i still wake up each morning and worry ],but i wonder if these blood tests are relevant to PMR AND GCR .Mine have been normal though it all over two years ESR 10 CRP 7.7 .One day a more positive diagnosis will be possible .good luck hope soon feeling better .

You may also like...