I have my ESR and CRP checked every so often. In February my ESR was 58 and CRP 12. I have never actually got down to normal levels in all the time I have been taking pred. I had some blood tests done for something else this week, which was fine, and had the usual CRP and ESR tests done too while I was there. My ESR was 117 and my CRP was 132, I nearly died of shock. Has anyone had an increase like that on their blood markers and do they know why?
I saw a new GP today, as mine is on holiday, she said I looked well and healthy. I am so impressed with this diagnosis I keep getting from doctors!!! I don't know why we need blood tests!
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piglette
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Crikey, piglette, no wonder you were so shocked. Although my markers were off the screen at diagnosis, they never climbed to those great heights again even during flares. I suppose the important question to ask is "How do you feel"? If you are feeling fine, or at least as fine as you were feeling when last tested in February, then either there may be some silent infection lurking or, daft as it may sound, has there been a mix-up with someone else's bloods? I'm sorry not to be of more help but hopefully your GP has suggested repeat tests in a few days. Meanwhile, give yourself plenty of TLC in case a virus or infection is lurking.
In fact the results are slightly higher than on PMR diagnosis and my rheumie said they were off the scale then. My GP said the CRP was 123, when I checked it was 132, a dyslexic GP! She wants to see me on Tuesday and she will do a urine dipstick test. She suggested I trebled my pred to 15mg. I am not sure the PMR is the problem as no flares or anything, but I suppose I may be wrong. She did not mention another blood test. I reckon I could do a better job. In actual fact I feel pretty good, a bit tired perhaps, but nothing that a glass of wine won't cure. I am racking my brain what it could be. I do have a tender red patch on my leg which I suppose could be a bacterial infection, but the GP dismissed that. The frightening thing is, she is the senior GP in the practice.
When I had my blood test in February I was called back in again as there was a problem with the blood for the ESR but the CRP was OK. As the blood nurse said that is impossible as the blood comes from the same tube. She told me some other stories about recent mix ups and the hospital blaming the GP practices for their errors, so maybe it is just a hospital cockup.
Piglette I don't want to be alarmist but your comment about ' a tender red patch on my leg which I suppose could be a bacterial infection' would have me concerned. If your blood tests are showing a possible hidden infection then it could be cellulitis which needs investigating pronto! This happened to a friend recently who felt fine at first but required strong antibiotics in the end. Please go back & mention the red patch to the Dr again & ask if it could be cellulitis. Good luck.
My normal GP checked it a couple of weeks ago as I suggested exactly that. She said it was not. I also mentioned it to the doctor today and she just brushed it off.
So what explanation do these doctors have for your raised levels? You'd think they'd want to investigate the tender red patch as it could solve a mystery for them, as well as being more diligent care for you, the patient.
That's a bit of a concern Piglette. It sounds like you've had the red patch for a few weeks. If your Dr said it wasn't cellulitis it would be because they had taken blood tests to eliminate the possibility surely? This is an infection that needs to be investigated with blood tests and not just with a casual look at the red patch. You have done all you can however, so unless you feel really unwell maybe monitor your own health very closely (for raised temp etc.) and get to an emergency dept if you deteriorate quickly.
That's reassuring that they're being proactive and testing/eliminating possible causes. I hope you continue to feel well and that the ESR & CRP results aren't significant and maybe it's just a mix up . I assume you'll be repeating the tests again to see if they're coming down? All the best piglette xx
I just went through smtg similar.At 14mg . I was feeling fine, just a bit of tenderness in my right shoulder, which seems to be the most impacted part of my body. But my blood markers startedto rise. Esr up to 40 and crp to 2.5 (USA). My Rheumy put me back up to 20mg and they went right back down no normalin six days. Still don't know if it was a flare or smtg else. Other tests were normal. Tapering down again. Feel like a yoyo. I think my Rheumy might be very conservative about inflammation. I wonder what she would have done if my numbers were even higher.
In my practice the nurses deal with legs, skin care and cellulitis and have way more everyday experience than the GP who will tend to be shown the big problems, when they are fully under way. They don't see the early days and how these things develop. Take me to an experienced leg ulcer nurse any day.
I agree, I have seen many a deeper cellulitis start with a only small visible area on the surface. Pred could also make the presentation less obvious due to inflammatory response suppression. As it is tender, I'd have another chat with them. If you start to feel ill for no obvious other reason get it seen pronto.
Have I got the wrong end of the stick? But in my practice, the ESR is in a completely different tube to the CRP when it goes off to the lab because the processing requires different chemicals. We also had a spate of problems with the hospital blamed on us but in the end we caught them out. There a few factors that can give erroneous results in the lab too. So I am assuming it was checked again with a reading that high?
The blood nurse told me they were in the same tube. I may have misunderstood of course. She was particularly annoyed as they are making it look like she is making mistakes and also it doubles her work. I have heard from other sources there is a problem in that department at the hospital.
For what it is worth my GP only tests for CRP and said the ESR test is more or less considered obsolete. I'm sure if there was a mix up, you wouldn't be the first! Stay away from the medical misadventure websites. John
Hi hiandri. I suppose my real worry is that my CRP is 132. I suppose having ESR and CRP done might help to see if they made an error on one of them of course. Not that they make errors!!
I heard on TV recently that errors were made on ten per cent of oeople in hospital. I am not sure at what level. Mind you if there are surgeons who are prepared to do operations for breast cancer when not needed none of us stands a chance.
Hi piglette, you must have read my mind, I was thinking of the breast surgeon when I wrote that, just pulled back from mentioning it!
Also, I was just watching Pete Evans, chef, being interviewed and he said - Why do you need a qualification to talk common sense. Why do you have to study something that is industry based and doesn't work!
How true, just because someone went to university 20 years ago and passed an exam, doesn't make them an expert. Based on my 69 years above ground I have met a lot of professional people from all walks of life - in my opinion 70% of them are close to incompetent, 20% meet expectations and 10% are exceptional, lateral thinkers, innovators, people who learn something every day! Just hard to find! Cheers John
Could it be a bite on your leg. I was thinking about Lyme from ticks but don't actually know if that would raise your inflammation markers. I hope you get an answer soon!
There are horror stories galore. Medical mistakes are now felt to be the third leading cause of death in the US. My father (who happened to be a physician so you'd think he'd be getting the best care) lived in the US when he was diagnosed with lung cancer. A number of things went wrong, medically, throughout a rather horrific four year journey to death, and it started with the initial operation to remove the diseased lobe. They opened up the wrong side of his chest, this not caught until the lung was exposed, all his ribs had been cut.... Under anaesthetic twice as long as a result, along with the extra healing required. Completely a medical bungle for which there is no excuse. If you ever have to have one of a matching pair of organs or limbs operated on, be sure you are conscious when they mark on your body which side is to be operated on so you can prevent this sort of mistake.
I agree it is really frightening. A guy locally had the wrong kidney removed. If you made mistakes like some of the medical ones when flying a plane everyone would be dead. I do not understand why they do not have a decent tick off list. Surely it is not rocket science.
David tells the story of being with a surgeon seeing the patient the day before surgery. The surgeon says "We're amputating your right leg tomorrow then?" Patient: "No", Surgeon "Yes we are." It went on in this vein a couple more times until the patient threw back the covers. "No, you're not"
Patient was quite right - the right was long gone...
David also had a similar experience over a hernia - the notes said the wrong side.
You really cannot make some of these things up. I must admit this surgeon in UK who has done hundreds of breast operations that he did not need to do and also botched some up is frightening. Particularly as it was known that he was making mistakes in the 1990s and the fact that the NHS had paid out millions in compensation. Yet he was allowed to happily carry on in the private sector for fifteen or so more years.
Yes - hope I never meet one like him. The whistleblower thing in the NHS is no better than it ever was. Criticise someone justifiably and it is you who is out on your ear.
I just think that is so awful. I suppose they always have rallied round each other and have created this godlike atmosphere around themselves. Goodness knows how you ever change it. I am sure that surgeon is not the only one, it looks like some of it was purely money making.
My stepmother was a NIghtingale nurse. She said that the procedure in hospitals where she worked (which would have been in the 1940s and early 50s) was in fact to do what I said should have happened for my father: the target limb, eye, whatever it was, would be marked with, I think, adhesive tape when checking with the patient before the operation.
She isn't ENTIRELY accurate. You can do a CRP on a sample that is more than 4 hours old - you shouldn't do an ESR. That's why all tubes of blood require time and date to be written on them.You also need more for an ESR than a CRP.
I'm with magmapearl on this - because I can't think of ANYTHING you have said that suggest heart failure. Which is what BNP is used to find. The level of CRP you have is too high to be heart. Your GPs are stabbing in the dark. As for raising the pred - that is just a kneejerk reaction and since you have no symptoms rather pointless as all it might do is mask what is causing it.
I think it is just the tick off mentality, not heart failure, let's cross that off and try something else. I must admit I have no idea why my GP thought it was, as I am not breathless at all. I suppose heart failure can cause leg swelling which I have due to fluid retention, I assume caused by the steroids.
I think the current GP just homed on to PMR. Then ignored everything else. I suppose in all fairness she has never met me before which did make it difficult in ten minutes, particularly as she spent five of them trying to find a cap for the thermometer to take my temperature, which was in fact was normal.
ESR test has to be completed within a certain time frame I believe and sometimes the window is missed for that one part of the test . I had mine screw up once as well and that is pretty much what they told me. I am sure my description is totally wrong as I am no medicAl expert but it is a time thing for sure.
It doesn't give a valid reading unless it is set up and done within 4 hours of the sample being taken. Not sure of the technical reasons - probably the proteins in the plasma are deposited on the surface of the red blood cells or vice versa (I'm sure I knew once upon a time) and it is they that contribute to the result.
This may have no bearing at all, but in my early days of blood tests for RA and GCA meds, on a couple of occasions there was no reading sent back for either ear or crp- can't remember which. The nurse explained rather shame-facedly that she hadn't filled the tubes up full enough- - the lab couldn't do the rest without the tube being full to the top!
That could have been the problem last time I agree, but they told the blood nurse that she had not supplied the blood, they did not come clean if that was the problem.
Yes, the ESR tubes we use have to be filled to the line as there is already a liquid in there and the ratio of blood to the liquid has to be right. The CRP is not so critical and in fact other tests are taken off the same bottle, like liver function.
After 2.5 years of being diagnosed with pmr through being admitted to hospital with what turned out to be ( pneumonia ) , my CRP was 91 and ESR was 50 .
Initially the doctors thought I may have GCA in A&E and I saw a Rhumatologist within a week . They , doctors in A&E wanted me to up my dose of steroid to 60 mg , however having had taken 2.5 years to get down to 4.5 mg prednisalone I was reluctant which some will say was full hardy , but my gut feeling told me otherwise .
So my Rhumatologist ( I asked my doctors during 2.5 years of diagnosis to see a Rhumatologist, but they always said no need ) has decided that the CRP reading which was 91 and now has gine down to below 5 is the one to follow with my blood test results . My ESR has always been around 40 which she says is normal for my age . As you get older the ESR level does rise . She has written to the doctors accordingly . Oh yes she also says that she now doubts the diagnosis of PMR . The Rhumatologist also told me I had pneumonia as well after my doctors had been treating me fo a chest infection .
So please insist on seeing a professional Rhumatologist now . Doctors have to know a little of everything , but do not know in depth about each illlness that comes their way .
I have been seeing a rheumatologist regularly. I am not sure they are much better. I had twelve blood tests in September last year, my GP could not view them until the rheumie opened the files which she had not bothered to do until January this year for my next appointment. She did write a letter before the blood test results, which seemed like a cut and paste.
I get regular blood tests, never been told what the levels are (on the ask list next time I go) just told that they are OK
Need to know what they are and what YOUR lab has as "normal range" since they do vary. But an ESR that is above 20 suggests there may be something going on and CRP is usually less than 1 or less than 10 depending on t he units they use.
If I had even just £1 for the times a doctor has said to people on the forums "the bloods are OK" when they weren't I could dine out at a good restaurant.
Thanks PMRpro,have wondered what 'normal' was supposed to be. My gp was so excited at my last visit because my esr was nil. He said he had never ever seen a nil result ...and he isn't young haha!! I get my bloods checked monthly for esr and crp after being diagnosed with gca following biopsy in august.
It amazes me on here how the gps vary so much in their treatment/advice.
I've learnt so much more on this site and am grateful to everyone for their knowledge and time.
I am sure if they were off the scale like mine they would say something. I insist on a print out of mine. My GP told me my CRP had gone down one time, when I checked I discovered it had gone up. I pointed this out and she said it was only a little bit. I said I did not think sixty per cent was a little bit. I orobably have a black star on my records as a trouble maker. I always get copies of letters sent to and from consultants too. I don't think there has been one that did not have at least one error.
Suziq where are you? That is my dream to be able to go on line to read my results on line. Currently I have to phone up to find if they have been checked off, then ask for a printout, then wander down to the surgery to pick them up. Such a waste of everyone's time. Even the GPs cannot see my xrays on line.
I just did a quick Google search for what elevated inflammation markers could mean and I quickly got that it could be from (obviously autoimmune diseases) lupus or rheumatoid arthritis but also brought up cancer and kidney disease and infections. I should think the doctors would want to do further testing on you to see that any of these things could be underlying conditions.
Hi Amkoffee, I totally agree, particularly as there are so many diagnostic tools now available. She did not even suggest having another blood test for CRP, just a urine dipstick test. I do despair. The surgery has just had a very low rating from the Care Quality lot. To improve it seems that they are now texting patients to remind them of their appointments. They also phoned me up to say that the repeat prescription I had requested had been put through. Whoopee.
when my wife was first diagnosed with PMR, the numbers were up there, but prednisone knocked the markers down right away, but not necessarily the symptoms. The symptoms improved gradually and the markers stayed down, prompting the rheumy to begin the tapering process too soon. Big mistake, before too long it was as if she had never improved. Pain was back all over again, yet the markers never came down. That is when her GP decided to get the pred back up again - no matter what the markers said about the inflammation.
Thanks navejasjoe. I have not been trying to reduce recently, I am on 5mg. CRP of 12 in January then suddenly 132 this week. No PMR problems like I have had when reducing too fast when my markers did go up and down, but never close to this extent.
I agree Elizcarroll I am obsessed with CRP and ESR and have a complex spreadsheet. This time though I have not had any particular PMR pain, I have not been reducing for a couple of months and feel fine, so to have a CRP of 132 does seem incredibly strange. I must admit I do wonder if it could have been a cock up at the laboratory, but as it was both ESR and CRP it does not seem so likely.
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