Can you tell me how often I should be having blood tests, and should I be able to just phone my GP practice to ask for them if I feel I have a flare? I have had hardly any blood tests over the 3 years since getting PMR - usually only when I'm being tested for something else and just ask them to include the ESR as well, which they're happy to do.
I feel as though I have a flare at the moment, and know that my ESR rate when tested a couple of months ago was above previous levels (28 as opposed to 12 previously). Is that a lot and does it signify a flare? The blood test was apparently passed by my GP without comment but I have become extremely stiff in my lower half. I have increased my Pred to 5mg (was getting down to 3.5mg) but it doesn't seem to be helping.
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Margot27
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Early days with GCA I had blood tests about every month......and between my symptoms or lack of them in conjunction with markers we decided what reduction I would make.
I say we, because it was a joint decision between my GP and myself.......my GCA journey was not as straightforward as some - 18months of her misdiagnosis led to me losing sight in one eye - my initial hospital contact was with Ophthamologist in A&E
not Rheumy ( in fact I didn't see Rheumy until 7 months after diagnosis).
So I downloaded guidelines once I know what I had, gave her a copy and we worked through it together - for the first year or so until I changed surgeries. Once I joined new surgery blood tests were reduced to every 3 months through mutual agreement.
Some people are like you and testing is spasmodic, and I would assume more are going to be because of Covid. Others like me liked to know figures...,but as we are always saying a return of symptoms are the key. I never had an issue with ringing up for tests, but things have changed.
Your last test should have registered with GP, and s/he should have asked for a repeat to check it wasn’t just a glitch. Personally I would ask for another, especially as you are now getting symptoms of possible flare.....and maybe depending on how quickly, hold off increasing dose until it’s done as extra Pred will probably skew the readings....and you really want an accurate result.
Thanks very much Dorset Lady, sound advice. I shall do as you suggest and ask for a blood test. I am having my Covid vaccine on Friday so won't feel quite so nervous about going to the surgery after a week or two. I find the forum very helpful and a great support - thank you for all the helpful advice you and others give.
Hi Margot27, For info - I currently have a blood test every month, the GP gets the results next day, reads them over the phone to me, and uses them to recommend my next dose of Pred. And I've gone along with her, so far. ESR and CRP sank fairly quickly to normal levels after my initial 15mg and it is on this basis that I am now reducing by 1mg a month; that’ll slow right down soon, when I get to 5mg.
Best check with your own doc but I understand that an ESR of 28 would be above normal but not super high. (I was 88 to start off with, not nearly as severe as some people but enough to diagnose PMR. CRP was also raised. ) My GP tolerates some fluctuation - ie between 10 and 13 - because of my age (62). But that's me, your 'normals' might be different, I don't know how it works.
I’ve never seen a rheumatologist.
Both my GP surgery and local health centre are very well set up for protecting against covid - the phlebotomist wears a visor and a mask, new sterile gloves etc. And there’s hardly anyone there these days, so no queuing in a crowded space, not at all. (Although there are more people in the foyer now, heading for their vaccinations. 😃. Me too, soon.)
Hi ImC. Thanks very much for your reply. It is interesting the wide variety of experiences we all have, and there is often someone with a similar story to learn from. You sound lucky in your GP - mine is OK but doesn't always get things right and I don't think is really that interested. Good luck with being offered your vaccination appointment soon. 🤞
You may need to add 5mg to the dose at which the flare has started to get it cleared out - then you should be able to drop back to the level above, where you were last OK, and that is likely to be more than 2 months ago. So you probably need 9mg for a week or so before going back to the lower dose - no problem, you don't need to taper.
The normal range for ESR is 1-20, anything above that is high but for a long time it was thought that up to 30 was fine for older patients. No, it doesn't increase as a natural part of aging, it increases because there is undiagnosed inflammation somewhere. The normal range is the range of values found in 95% of a population of thousands (usually 10,000) apparently healthy people. It is NOT the range that is normal for one person. So if you got down to 12 when you were well on pred - anything above that is either because you have another infection/illness (even a cold will send it up) or because the PMR inflammation is increasing. If you have one raised value, it should be repeated a week or two later to see if there is a trend unless you have symptoms - in which case it is likely the PMR is playing up.
I rarely have blood tests because neither my ESR nor CRP show much for me at all - the ESR should be low single figures and if it gets into the teens it is high for me but that hardly ever happens. But one soon after any reduction is a good idea to see you are still on enough pred and catch situations like this,
Thank you very much for this PMRpro. So do you think I should take the increased dose of Pred and then have the blood test, or have the blood test done first?
Probably the blood test first but it depends how long you must wait for the blood to be taken and whether you can manage with the pain in the meantime.
I am finding that using paracetamol and keeping moving is the key so I think I'll be able to manage for a few days, I'll phone the surgery tomorrow to ask. Thank you.
I have blood tests every month and have done for three years. My CRPS elevate with a flare but the tests also monitor kidneys and liver. I have had two flares over the past year and the symptoms sent me to have an earlier blood test which immediately confirmed the flare. But I have a blood test form which covers a year and says 4-weekly blood tests or less for GCA and PMR on prednisone, lefludomide and mycophenolate. I also have the results (password access) emailed to me as well as the GP and rheumatologist and my rheumatologist responds immediately if the CRPS are elevated with what dose adjustment I need to make.
I assume they mean CRP - c-reactive protein, another measure of inflammation and claimed to be more reliable than ESR (and CRP contributes to the ESR). It is more reliable in the sense it isn't as picky about the speed of transport of the blood sample to the lab but my CRP never budged except in response to a cardia problem whereas the ESR did rise, albeit not out of the quoted normal range.
Thanks, I had no idea about that, but it sounds as though it's not something I need to worry too much about. My request for a blood test has been turned down by my surgery on the grounds that I wouldn't get one for about 3 weeks, and by that time I would be on higher dose and ESR would have gone down. Pretty much what you had said would be the case if I had to wait. C'est la vie!
I don't have any regular blood tests at the moment. I was due a rheumatologist appointment in December, and was to have a blood test beforehand, but as the appointment hasn't materialised, I suppose that's that.
I used to have a blood test every month, my Dr was happy for me to do this. But currently with COVID I have made the choice to be tested every 3 months instead. These are the tests that are done:Full blood count
CRP
ESR
Liver
Kidney
HbA1c
I also have a Vitamin D test once a year. I’m not sure if I should be tested for anything else.
I have been given access to my medical records so am able to look up the results a few days after the test.
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