Low ESR and CRP levems

[watercolours]

Hi all, I'm wondering if anyone can explain to me why some people get high ESR and CRP readings and some don't?! I'm one of the don'ts! I have been in such awful amount of pain and had my bloods done in advance of my rheumatologist appt next week. My ESR came in at 41 and CRP at 33, both essentially low but actually high for me! I know my rhumey will say "your bloods are a bit raised but not too bad", and I'll be trying to explain to him just HOW much pain I'm in, and he won't believe it! It's soul destroying. I have increaded my steroid dose to 9mg, from 7mg, in an effort to try to get it under control. I've been diagnosed with PMR, Fibromylgia and Psoriatic arthritis, (had GCA 6 years ago) so I'm not 100% sure all the pain is from PMR. Many thanks in advance🙏

[PMRpro Ambassador]

I don't think anyone knows why some people do not "mount the acute phase response" as it is called. It is just so! It is an immensely complex response involving a lot of different factors and proteins.

An ESR of 41 is NOT low by anyone's standards - the normal range for men is up to 20 and according to some up to 30 for women. But it is what it is like relative to your own personal normal that matters. The "normal range" is the range of readings found in 95% of a large population (usually 10,000) of nominally healthy subjects not the range that is OK in a single person - something it appears the average doctor doesn't understand! My personal normal is in low single figures - but it bumped along at 16-18 for weeks during a really severe flare but no-one thought anything of it. I don't know what your lab's range is for CRP but I would usually assume over 30 was raised.

Whatever - there is no relationship between the ESR/CRP levels and the pain experienced by the patient. And a rheumy should know better than to deny the patient's experience of their pain. But you have fibro on your little list - I was talking to my physiotherapist about that on Friday: once it appears, many doctor blame it for everything and dismiss the patient experience. Not good enough - it is a get-out diagnosis.

Psoriatic arthritis can be an underlying cause of PMR symptoms - it may not be "pure" PMR.

[watercolours in reply to PMRpro]

Thanks PMRPro, it'll be interesting to see what rhumey says about the 41 reading, if he says it's not bad I'll pounce on him (metaphorically speaking 😆) and say as you've said, if my range if always low then this is high! The range here (Ireland) is 6-22.

Also you're SO right about the Fibro diagnosis, everything is fobbed off with that, will even say, oh Fibro reacts to Pred, which I've strongly denied. But either way he won't know what to do with me, he has tried so many things between injections, infusions, different medications, none of which work or have nasty side effects! He's also told me I'll never get off steroids as I cant get below 7mg, when I crrrrawl down to 6.5, it eventually catches up with me and I get that deep grinding pain in the buttocks, thighs and shoulders and basically can't move, so at i almost feel like agreeing to that🤷‍♀️ Anyway thanks again for your reply, greatly appreciated🙏

[PMRpro Ambassador in reply to watercolours]

Fibro DOESN'T respond to pred - it is NOT an inflammatory disorder.

If it is psoriatic arthritis - what has he tried for that?

[watercolours in reply to PMRpro]

Yes, absolutely Fibro does not respond to Fibro, it just shocks me how much doctors think we don't know our illnesses and by saying that thinks it negates anything i say and certainly don't expect an argument! Hes tried me on Humira, Embrel, Remicade, Tocilizumab and many others i can't remember, the latest was Arava, but got side effects very quickly in back, kidneys and liver. I'm sure when I say that he'll dismiss it cos god knows how I'd know where my own organs are🙄

[piglette]

It does amaze me how doctors seem to be able to diagnose our pain, when we tell them we are in excruciating pain they seem to know we are not! Amazing.

[watercolours in reply to piglette]

So true piglette, and they truely think we know nothing about our illness🙄

[powerwalk]

i have fibro too so i do understand to know whats what. Its all a mush at times! Things are easily knocked out and very difficult to get control of. Let us know how you get on with your rheumy visit. I do get the constant never ending pain thing sometimes i feel im going mad. Also in ireland. Best wishes.

[watercolours in reply to powerwalk]

Thanks Powerwalk, thats justnits, everything mushes together and nothing is clear cut and easily identified, completely agree, thank you🙏

[Ridge]

I have found this very interesting. My CRP and ESR levels were never high compared to many. However my d-dimers were. Normally d-dimers are used for blood clots but my rheumatologist told me they could also indicate inflammation. I did have follow up ultrasound and Ct scans for clots finding none, thank goodness.

He also told me that the reading of any inflammatory marker was no indication of pain level.

I have also had high AST levels which is normally indication of liver health but in my case it refers to muscles! When is AST a liver or muscle enzyme I asked. When you read it with the whole blood profile was the answer!

Nothing is straight forward!

I am very sorry for your problems. I do hope you get good help.

[tangocharlie in reply to Ridge]

Interesting, I have a friend who is a GP and she had a patient she eventually diagnosed with PMR but I'm sure she said his AST or was it ALT was so high she was convinced it was cancer at first. It was something unusual, not normally associated with PMR, I'll go back and ask her more.

[PMRpro Ambassador in reply to tangocharlie]

Liver enzymes can often be raised in PMR (ALT and AST) but it is unusual for them to be very high, just high.

[Ridge in reply to tangocharlie]

AST is meant to be 31. Mine was 355. But the ALT was normal. However CK and DHL were also high indicating a muscle enzyme problem!? Thus the AST indicated muscle rather than liver? I prefer that as I thought it might be alcohol! But I am now off all alcohol due to Afib!! Just can’t win!

A good doctor essentially needs the mind of a detective!

[watercolours in reply to Ridge]

Thanks Ridge, good news about the no clots, peace of mind for you!

[nuigini]

A reading of 10 or more is pretty indicative of a flare for me. On diagnosis both ESR and CRP were 100+. Fortunately, CRP has remained a pretty good barometer for me.

[Karendeena]

Hi watercolours, not sure where you live but here on the UK your ESR and CRP eould be considered high! Our parameters with my GP/hospital is 0 - 20 for ESR and below 5 for CRP

[DorsetLady PMRGCAuk volunteer in reply to Karendeena]

NHS reference ranges

ESR:

the normal range is 0-22 mm/hour for men and 0-29 mm/hour for women.

CRP:

most people without any underlying health problem have a CRP level less than 3 mg/L and nearly always less than 10 mg/L.

[watercolours in reply to Karendeena]

Thanks yes, pretty much the same here!

[tangocharlie]

I'm one of those whose bloods do mirror pain and stiffness levels, when I'm feeling ill my levels are always up. To me a CRP in the 30s is high as normal should be about 5 or 8 ish. When I was searching a diagnosis I was told I had psoratic arthritis not PMR because of my young age (early 50s) , I didn't believe it especially as no psoriasis anywhere. Then I was told my symptoms and inflammation were probably just down to being overwieight or fibromyalgia. I didn't believe that either so kept pushing for a PET CT scan which when I eventually got it confirmed it was PMR all along, but it was 2 years fighting the doctors and their pre-conceived ideas which was very frustrating. Now I think if someone is dx with fibromyalgia they may just have been fobbed off with an easy catch-all diagnosis and not enough investigations done. I'd ask about scans. I'd also ask about increasing the Pred to say 15 or more for say a week to see what happens, as fibromyalgia doesn't respond to it but things llike PMR and probably psoriatic arthritis do. Don't give up and let them fob you off if you have doubts in your mind, lisen to your gut feeling

[PMRpro Ambassador in reply to tangocharlie]

That is exactly what my physiotherapist said last week - fibro as a diagnosis should not be allowed because once it appears on the notes - everything is put down to that. Especially by doctor who use it as an excuse to say the symptoms are not not real but "all in the mind" ...

[watercolours in reply to tangocharlie]

Thanks tangocharlie, so true about the Fibro dx. Thing is I was dx with Fibro 20 years ago, and then my pain levels were just ridiculous for a couple of years and my rhumy was still its Fibro, it was when I literally itemised where all the pain was and said about buttocks, thighs, shoulders, could turn in bed, it was like a light went on for him and he said PMR and I started Pred and by next day my pain was next to gone!! But I'm bk now to the mix of pain and don't really know where it's all coming from. I think I will increase to 15mg, and see what happens!

[tangocharlie]

Thanks for the info