inflammation markers - ESR "old-fashioned"??? - PMRGCAuk

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inflammation markers - ESR "old-fashioned"???

humlies profile image
51 Replies

Thanks to all your expertise I now know a bit about ESR and CRP. I recently discovered that our surgery never gives ESR tests, which they think is an "old-fashioned" approach. My latest CRP test was only 8, which I gather is within normal levels. Why then, I wonder, am I still feeling so much soreness? I have never been really pain free since I started on 15mg of prednisilone in August; I am now down to 9mg, and the doctor wants me to reduce to 8mg, which I am resisting. (After a few bad days I took the plunge and have made a private appointment to see a recommended specialist in Torquay.)

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humlies
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51 Replies
MrsNails profile image
MrsNails

Hi Humlies

A lot of Rheumatologists prefer the CRP Levels & that's what they always Test for as l'm on MTX - l used to live in Wales where they didn't do ESR only CRP but at my new Surgery in England they do both but l'm a CRP Level Checker as that's what l've always been used to.

MrsN

humlies profile image
humlies in reply toMrsNails

Thank you! So my surgery is not alone in this.

MrsNails profile image
MrsNails in reply tohumlies

In Wales they weren't "allowed" for cost implications & it was only ever done at the hospital but many Consultants prefer the CRP as a more accurate marker in PMR although up to 20% of Sufferers have No Raised Levels......

humlies profile image
humlies in reply toMrsNails

Thank you! What a minefield this is.....

SheffieldJane profile image
SheffieldJane

I hope your specialist is a star turn!

It sounds to me like you have never been on quite enough Prednisalone. I definitely needed 20 mgs at the outset, for 6 weeks, to properly conquer the built up inflammation. I am not sure what is best when you are so far down the reduction path. A doctor would be very reluctant to start again with all the downsides of Pred. In my experience they go off on tangents ( other conditions). Wishing you 🍀.

I have also been told that ESR is ignored in favour of CRP - then why do it?

Alchemy8 profile image
Alchemy8 in reply toSheffieldJane

What do you mean by "properly conquer the inflammation"!? It may seem a silly question but for me there are two issues - first the sense of burning which I associate with flare up and secondly the stiffness in the joints. Are you also including the latter? This stiffness eases as the day progresses or if I am doing qi gong in the morning, but never entirely goes (especially in the right side of the neck and top of the shoulder). I am on 20 mg having dropped from19mg 2 weeks ago with a high CRP to start with and 9 months on (some yo-yoing here).

SheffieldJane profile image
SheffieldJane in reply toAlchemy8

It is my understanding that all of symptoms of PMR stem from inflammation including the stiffness, pain, burning etc. Like many others, I went undiagnosed for many months at least. By the time I got a tentative diagnosis I could barely walk, get out of a bed/chair, get in or out of a bath unaided. It had started quite insidiously with flu type feelings, bilateral pain and stiffness, in the shoulders and groin. I think that the build-up of inflammation needed time on Prednisalone before my symptoms properly alleviated. However, within 48 hours the improvement was nothing short of miraculous. I was lucky, but being practically symptom free took much longer. I hope that make my meaning clearer. My blood test results did not reflect my symptoms once Prednisalone was introduced. The were pretty normal, I think.

Alchemy8 profile image
Alchemy8 in reply toSheffieldJane

Thanks so much - It sounds as though I should stay on the 19-20mg for the time being until I am completely symptom free,

PMRpro profile image
PMRproAmbassador in reply toAlchemy8

You may never be totally pain-free but you do need to stay at the starting dose for at leat 4 to 6 weeks until the symptoms have improved to a stable level. If your blood markers work for you, then they should be falling noticeably and preferably in normal range - even more preferably stable where they have got to.

humlies profile image
humlies in reply toSheffieldJane

Yes, interesting. I had 2 miraculous days right at the beginning of taking pred, but since then have never been pain free. I didn't have to go what you went through initially, though.

PMRpro profile image
PMRproAmbassador

They may think it is old-fashoned, but for some patients with PMR it is the monitoring tool of choice. For some reason it is acknowledged by the experts that this is so. In some patients the ESR is raised, in some patients the CRP is raised, in some patients both may be raised and in others neither. For me, neither ESR nor CRP go outside normal range - my CRP was raised once, on a day when I had a really bad episode of atrial fibrillation which also causes it to go up, the folllowing week it was back to normal. My ESR ran at 16-18 for weeks during a really bad flare but that was not remarked on as that is still "normal range" - but MY personal normal ESR is in low single figures so 16-18 is very raised for me. The trouble is, too many doctors don't understand what normal range means - it is the range of readings you would find in 95% of a population of thousands of healthy adults. Not a range that is acceptable in one patient.

humlies profile image
humlies in reply toPMRpro

What a good point. I gather my CRP was about 30 at one time, so 8 or so must be an improvement. What a lot of questions I will have for the consultant! At least I have a face to face appointment. Thank you for all your help.

GOOD_GRIEF profile image
GOOD_GRIEF in reply tohumlies

The "improvement" comes from the steroids doing their job.

It's like taking an NSAID when you have a fever. Your temperature goes down while the medicine is doing its work, but you're still sick, and you temperature will rise once the dose wears off.

Jan_Noack profile image
Jan_Noack in reply toPMRpro

RE normal range. Is it really a range to 95% of healthy adults. I thought the labs range differ(although over time, with more tests caving been run, they seem to approach each other) and the lab ranges were based on their OWN 95% amounts. The lab range is merely represents where their customers lie..and will be in error due to unhealthy people testing being included in the population., more so as unhealthy people who expect say ESR to be raised will be tested for ESR? Hope you are right..it would be preferable to what I have always thought.

PS MY ESR also sits about 18ish in a flare at present. My CRP is not as movable?(sorry can't think of the word) but does go up and down. My Fathers CRP is 1, My Mum's used to be as well. I reckon 1 is good!.. only I have to get down there yet.

PMRpro profile image
PMRproAmbassador in reply toJan_Noack

It is:

"In medicine, a set of values that a doctor uses to interpret a patient’s test results. The normal range for a given test is based on the results that are seen in 95% of the healthy population. Sometimes patients whose test results are outside of the normal range may be healthy, and some patients whose test results are within the normal range may have a health problem. The normal range for a test may be different for different groups of people (for example, men and women). Also called reference interval, reference range, and reference values."

The differences between labs tends to be because of slight differences in the techniques or devices used to measure the substance - and why the figure quoted in brackets after the result on your report is significant. You cannot always directly compare the results from different machines, whatever they are measuring, but you can never compare the results from different assays. Each lab does run a set of assays for their own range - but the basic range is established by the developer of the assay and all subjects with any apparent illness were rejected. That is part of the reason that it was thought originally that ESR rose with age as a normal development and they allowed older patients to have a higher result before being concerned. More recently they have realised it is more likely to be due to an unidentified/undiagnosed inflammatory disorder.

If a lab introduces a new assay they always send out a warning that a new normal range now applies. When a device is set up to measure a given substance, there are a lot of standard samples run after the calibration process - the calibration process works out the optimum reading from the machine and the standard samples assure quality control. They are repeated at intervals throughout the assay to be sure the baseline isn't shifting or some other problem has developed.

The figures we usually quote for normal ranges for ESR are measurements of the speed that red blood cells settle to the bottom of a vertical tube - under specific external conditions in terms of temperature or time since taking the sample. That keeps the range fairly comparable but a variation of 1 or 2 is to be expected. CRP should be low in the context of inflammation - hdCRP is a very different assay with different criteria (that is the one used for heart disease).

Megams profile image
Megams in reply toPMRpro

~PMRpro - most interested in your comment re A/F and a rise in CRP - can you please tell me why or what causes this to happen? I am most fascinated ~

PMRpro profile image
PMRproAmbassador in reply toMegams

ahajournals.org/doi/full/10....

They say at the end of the discussion - they couldn't tell if it was cause or effect. It just is.

More here - it is in English!

revespcardiol.org/en-c-reac...

Megams profile image
Megams in reply toPMRpro

~Fascinating reading - thank you so much as always.

I guess the role of our steroids crucial in keeping any inflammation under control where possible even if "they can't tell if cause or effect" as you mention.

PMRpro profile image
PMRproAmbassador in reply toMegams

I do find that the pred is crucial for managing the a/f or tachycardia episodes - even a couple of mg less results in more episodes.

Megams profile image
Megams in reply toPMRpro

~How interesting - whilst I am now on Betaloc CR 23.75mg my a/f is thus far no where as bad as it was (fingers crossed) & just wouldn't consider trying again to drop half mg of hydrocort. even tho I dream of just reducing a fraction.

HeronNS profile image
HeronNS

Where I live the blood clinic will only do one of the tests at a time, a doctor can't ask for both, although I know both were done at the very beginning when I was finally diagnosed. For a couple of years my doctor used ESR and she still asks for that by mistake once in a while, but other doctors I saw at a certain point both asked for CRP and we've stuck with that since. I think it's less sensitive to a delay in processing. ESR has to be processed within a very short time frame or the results will be inaccurate. Although admittedly I don't know if that is a concern here.

Constance13 profile image
Constance13

I find this so difficult to believe. When I was first diagnosed with PMR (8 1/2 years ago) my ESR was 88 and CRP 32. They didn't stay there, even on pred, and increased and increased to eventually ESR 132, CRP 100+. I was eventually hospitalised so they could find a way of reducing both.

humlies profile image
humlies in reply toConstance13

Goodness me - these sound incredibly high scores. How are you doing now? Are you still on pred. or has the PMR cleared up?

Constance13 profile image
Constance13 in reply tohumlies

I wish! But relatively stable on 4 mg.

humlies profile image
humlies in reply toConstance13

Good to hear you are stable on 4 mg.

Megams profile image
Megams in reply toConstance13

~You have me hooked now Constance13 - what was the final diagnosis to these very high readings?

I'm assuming this was the result of your PMR only??

Glad to read you are doing OK on 4mg ~

Constance13 profile image
Constance13 in reply toMegams

Just a very aggressive PMR. It's been a struggle to get down to 4mg - and the doctor informed me a couple of years ago that I would 'probably' be on 4mg for life - but I get a bee in my bonnet every now and again and think "I really ought to try". I'm the 'bane' of PMRPro.😂

Jan_Noack profile image
Jan_Noack in reply toConstance13

yes, I keep trying too.. just gone back to 3mg, sigh. My main problem is extreme fatigue ,and I've had one of those Synd tests and it was normal (though I did drink a couple of cups of coffee during the test.. they said it was fine, but now I think I made a mistake there. It means with the two cups of strong coffee and whatever is in the test I actually felt really good... wish I could take whatever it was daily!

humlies profile image
humlies in reply toJan_Noack

Now what is a Synd test?

Jan_Noack profile image
Jan_Noack in reply tohumlies

syncathen test..sorry typo

Megams profile image
Megams in reply toConstance13

~Hmmm think your Dr might be right......... you wouldn't want a repeat performance of those readings.

My Rheumie has uttered exact sentence to me in past & each time I've tried to drop a mere half a mg I'm in trouble - every time!

I've stayed put @ 20mg hydrocoritisone which is effectively about 5mg Pred.

lesley2015 profile image
lesley2015

Hi Humlies

My GP and consultant do both, the consultant works on the CRP more than the ESR, for me my ESR raises first then the CRP follows, so if my ESR is up I know that I have a flare, as does my GP who looks at this result as well.

Mind you, I know when I'm having a flare, but sometimes feel I need to 'prove' it with blood markers which is really frustrating , especially if they don't reflect it.

humlies profile image
humlies in reply tolesley2015

Thank you - it all seems a minefield. How good that you have a GP and a consultant on your case. I have been warned that our local doctors lose interest in someone with PMR aftera few months!!

Odosmum profile image
Odosmum in reply tolesley2015

Mine do both too. My inflammatory markers are usually very high (both of them). About 3 specialists ago (I've been at the inflammatory stuff a long time) the man said that symptoms often came first and the blood followed. His first question was always about how I felt and if meds were to be adjusted, that was what he based the adjustment on. He was correct too - bloods always did follow symptoms.

humlies profile image
humlies in reply toOdosmum

Ah - thank you.

diana1998 profile image
diana1998

I've always had ESR and CRP bloods done every 3 months for 5 years. After very high initial readings the steroids stabalised them to normal. Doesn't help me reduce dose any easier though 🤔

My surgery has only ever done CRP (always in normal range for me) and PV.

S4ndy profile image
S4ndy

My GP orders ESR and CRP when he does a blood test. My Rheumatologist only orders CRP.

My CRP does fluctuate and just tested at 32. My Rheumatologist was surprised at that as the previous blood test showed CRP of 8!

It's hard to work out what's the cause with me as I always have pain of some sort or other due to Osteoarthritis. Plus I had badly infected teeth in my mouth for over a year which were only removed 4 months ago.

So my Rheumatologist wants me to stay at 5mg for a few months to see if it goes down. Unless of course I have a flare then I should go back to 10mg.

He was also questioning me about whether I had any infections at the time of the blood test. I didn't think I had but I said I was suffering from frequency so he suggested I get a urine test, he wanted it cultured not just "dipped". I explained this to the surgery and they took a sample, dipped it (all clear) and sent it off to the lab. It came back negative but they didn't do the cultures. I don't think I have a UTI but then I didn't think I had a UTI when I had a kidney stone either!

Guess only time will tell. We will see what the CRP is like in January when I get the next test!

humlies profile image
humlies in reply toS4ndy

Yes, I have had clear UTI tests even though it later became clear that I had a severe infeection.

PMRpro profile image
PMRproAmbassador in reply toS4ndy

The tests the GPs use miss loads of UTIs and the labs don't always culture them long enough - these are know fact but they ignore it. To our detriment ...

Chest infections can send CRP into orbit!!

humlies profile image
humlies in reply toPMRpro

I am amazed at your knowledge - presumably you have a medical background? Since I have COPD as well as PMR, I note well your comment on chest infections! I am however determined to maintain a positive outlook - which I know contributes to healing. Thank you.

PMRpro profile image
PMRproAmbassador in reply tohumlies

Have medical science qualifications and degree, worked in the health sector almost all of my life in one form or another - and am married to a healthcare professional as well as mother of 2 more, both of whom were married to NHS ambulance service staff! Now have at least one grandchild following on. Amazing what you learn along the way ...

humlies profile image
humlies in reply toPMRpro

Well, I am one of I don't know how many to benefit from your knowledge - thank you!

MarkWin profile image
MarkWin

I have taken to ensuring crp and esr are taken because they seem to reflect different 'issues'. When initially unwell, crp over 150 but no esr taken. Hospitalised and within week, crp over 350. Noone really knew what was going on, but equally, I had no 'baseline' for crp when I was well. Eventually released from hospital but crp still around 12-15. I now know, 4 years on and just clear of medicines, that 3-4 is my normal crp, and 7-8 is normal level of esr. Difficult explaining to GP when I am not well if crp or esr above "normal" range (10 or 12 depending on which hospital does results apparently) though I can feel when it rises, so when I am at 12-14, apparently I am still "satisfactory". Very frustrating but I am trying to manage myself, without medicine and now unemployed so can take it steady. If it gets above 14, I am hoping that my general unwellness etc will trigger an intervention, but we shall cross that hurdle when we get to it!

An interesting read is Mason A Clark booklet called Giant Cell Arteritis, one man's exciting experience. Don't worry too much about title but is interesting on crp stuff.

Do get both done if you can, keep a record or graph of results and track against how you feel, you will be surprised by what you learn about yourself.

Good luck.

PMRpro profile image
PMRproAmbassador in reply toMarkWin

That's why symptoms should always rule over blood tests. It is a fundamental lack of understanding about how normal range is established - drives me up the wall too!

humlies profile image
humlies in reply toMarkWin

Yes, I now know that I need to ask more than "how was my blood test"!

Parijm profile image
Parijm

My recollection is that ESR gives s a more dependable reading than CRP for inflammation. I was told I had PM R in 2014 & put on 30 mg Prednisolone daily. I have just stopped the steroid this year. Perhaps a high starting dose made it harder to reduce. I still have aching muscles but am 68 yrs old now so perhaps to be expected!

humlies profile image
humlies in reply toParijm

Oh no, it is not necessarily to be expected... I am 10 years older than you, and until 4 months ago I did not know what it was like to have aches and pains in my body. At least PMR has made me feel far more sympathetic to others! I worked for some years with what was then Age Concern England, and one thing we always told the volunteers and employees when we were training them was that they should never accept the excuse "it's your age"! I do hope your aching muscles improve; it must be so disappointing after this time to not feel 100% better.

Parijm profile image
Parijm

I’m cheered immediately to read your reply as I did not expect to wake one morning in my early 60’s unable to move myself in bed. I’m still shocked that a healthy person can be made to feel debilitated in this way. I’ve continued with Pilates and since Osteoporosis has now taken hold I have gym sessions with a trainer for the good of my bones. I don’t take my health or fitness for granted and doing nothing will eventually leave me in a worse state. My granddaughter is nearly 2 and quite a weight but there’s no way I will give up lifting her up because my arms feel weak - mind over matter. Thank you for your encouragement.

HanaleiBa profile image
HanaleiBa

In the US we use the Vectra exam now for RA - the gold standard for rheumies. It measures about 27 inflammation markers. My CRP and ESR are always low - CRP stays below 7 and ESR never got above 17 even when my wrist was so damaged and flaring that it required surgery. VETRA showed me in “high inflammation.” And when the other 2 were 1 and 2 at once point, VETRA was high. We were able to change my meds before underlying damage was done that time. I wish the NHS used the most currently available tests. For people like me, it’s critical.

PMRpro profile image
PMRproAmbassador in reply toHanaleiBa

But we on this forum don't have RA so the Vectra test is fairly immaterial - PMR is a vasculitis, not an inflammatory arthritis.

healthcentral.com/article/9...

It isn't undisputed and in the UK you are likely to get all the same information from a set of blood tests and imaging that isn't being sold by a private lab.

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