CRP and ESR

[Joseph14612]

I know it is a well known fact on this forum that ESR and CRP are unreliable while on Actemra. But most rheumatologists don't seem to know that. So I found this one study of many out there that conclude this fact so I can show my rheumatologist and anyone here interested....thank you PMRpro and DL as well as others for pointing this out many times...I had not seen the study for myself until now...

"Tocilizumab is a humanized IgG1 monoclonal antibody that competitively inhibits interleukin 6 (IL‐6) by binding to both its soluble and membrane‐bound receptors, thus blocking the transduction signal triggered by the IL‐6/IL‐6 receptor complex.1 It is approved for the treatment of adult rheumatoid arthritis (RA) patients who have failed to respond to conventional synthetic disease‐modifying antirheumatic drugs (csDMARDs) and/or tumour necrosis factor antagonists.2 It is also approved for systemic juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis and giant cell arteritis. Due to the blockade of IL‐6 signalling, tocilizumab inhibits the hepatic production of C‐reactive protein (CRP) and other acute phase proteins like the erythrocyte sedimentation rate (ESR). Thus, CRP and ESR levels rapidly decrease after the initiation of tocilizumab treatment, even before any improvement in swollen or tender joint counts is observed.3 This discrepancy has led to concern on disease activity evaluation in tocilizumab‐treated RA patients."

ncbi.nlm.nih.gov/pmc/articl...

[SheffieldJane]

Well found!

[PMRpro Ambassador]

I am astounded at how little some doctors know about using it - can't ever have read the clinical trial documentation!

[Joseph14612 in reply to PMRpro]

My GP replied "Thank you for this information!" Haven't heard from rheumy but he usually responds 3-4 days later if at all...

[Joseph14612 in reply to PMRpro]

PMRpro...Can I have your permission to copy your article on DSNS and paste it on another website to help others? I will include your user name of course.

[PMRpro Ambassador in reply to Joseph14612]

Of course - it's in the public domain! I did discovere relatively recently that there are rheumies in the USA who use similar approaches.

[Joseph14612 in reply to PMRpro]

Thank you...😍😍

[nallufl24]

it amazes me that rheumatologists don’t know this. I thought for sure I was flaring a couple months ago because I had a constant head ache and jaw pain. My doctor insisted I was not flaring because my markers were very low. I told him it didn’t matter. They were low because of Actemra. He wasn’t buying it. He had a million reasons why I had a headache.

Anyway, I wasn’t flaring. After reading everything I could on the internet I realized I was grinding my teeth. I went to dentist and started wearing an overnight mouth guard. All symptoms went away after several weeks.

It just made me angry that doctor was so sure it wasn’t a flare. He wasn’t willing to even suggest any help. According to him, bloodwork was normal so there’s nothing wrong.

[Joseph14612 in reply to nallufl24]

absolutely! I have the same problem, been wearing a mouth guard for about a year now, thanks to my dentist. But I think it’s the neck pain or weaning too fast.

[PRL1957 in reply to nallufl24]

'He had a million reasons why I had a headache.'

Slightly tongue-in -cheek, I know, but was he one of them?

[nallufl24 in reply to PRL1957]

Haha, I’m sure he was!

[PMRpro Ambassador in reply to nallufl24]

He'll come a cropper one day when he gets one of the 50% of patients for whom Actemra is only a partial success because of the 2 other mechanisms for inflammation to be created that aren't stopped by Actemra.

[Mayadill in reply to nallufl24]

I've found them unreliable with just PMR and Pred. And my GP practice agrees. Small anecdote at the other end of the scale. Just had my routine bloods and feeling blooming. Got message to make a non-urgent telephone appointment. The great day came.

Doc: I'm calling because your CRP was raised.

Me: I've got PMR.

Doc: Oh, OK, doctor who reviewed the results couldn't have realized that. And you're OK?

Me: Fine, thanks.

Doc: Great, nice talking to you...

[PMRpro Ambassador in reply to Mayadill]

Though to be fair - if you are on the right dose of pred it shouldn't really be raised! Unless you are a relative of piglette

[Mayadill in reply to PMRpro]

In context it was following a summer of double cataract surgery. Don't suppose he knew that but I did though overall my impression is my CRP is very easily twitched, does not like this PMR thingy at all and is going to stamp its foot and scream until it goes away. It was 20 in March 2021. In Dec 2020 I'd had a CT thorax abdo pelvis and was about as confident as it's possible to be there was nothing else going down. Both instances PMR under total control

[Mayadill in reply to PMRpro]

if you are on the right dose of pred it shouldn't really be raised! So the CRP isn't expected to register the daily IL-6 show, the basic abnormality of a PMR-afflicted body?

[PMRpro Ambassador in reply to Mayadill]

Not if you are on pred which reduces the inflammation the IL-6 creates, The blood markers are raised by inflammation in the body being registered and triggering the liver to produce CRP and other proteins in response. There must be enough inflammation and for long enough before the CRP rises - and it is the rise in CRP that contributes to the rise in ESR. If you take your pred at 2am, it is present before the IL-6 shedding and less inflammation is created - less opportunity to raise the CRP/ESR.

[Mayadill in reply to PMRpro]

Thank you. So could the following be plausible?

At diagnosis my inflammation levels were somewhere halfway to the moon, raging, out of this world. irritatingly the numbers aren't in the DS.

i think I might have read somewhere CRP can lag behind how you feel, so it never fully came down, despite how well I was feeling once on Pred.

Until recently i was taking my Pred in the late morning, 10 or 11 am, when the night owl surfaced! So giving at least some of the IL-6 fine time to get bedded in, get noticed, so that provided the CRP with a regular top-up, so despite my feeling symptom-free it never really gets back to normal.

[PMRpro Ambassador in reply to Mayadill]

Possible!

[Grammy80]

I think it great that you found this info...so easy to copy and paste for the uninformed rheumatologist. It is scary out there gals and guys....we sure need each other.

You'll never hear me say the US health system is great...it isn't!!! It has become a corporate machine influenced by money, politicians, insurance companies...and run of the mill greed. BUT...I have to give a shout-out to my rheumy; always ahead of the curve ....actually the italicized words are his from my visit this morning!!💞

[Joseph14612 in reply to Grammy80]

yes the US is not what it used to be…scary stuff going on..

[Grammy80]

....and I've lived long enough to see it deteriorate. I remember when I thought wow I'd better go to a specialist for certain things if I wanted proper care. He further stated today that a man or a woman studying medicine is hard pressed to get a job if they don't go for a specialty in today's day and age....because of the corporate control. The private practice of a physician is a rare thing. 😔 Sad but true. 💓

[WaltzG]

Hi I am on actemra and methotrexate for my PMR/gca since steriods incompatible. Does the meaningless decrease in markers mean I am still at risk of vision loss even tho my symptoms virtually gone? Has anyone on here got better on actemra? Thx

[PMRpro Ambassador in reply to WaltzG]

It isn't that the inflammation isn't combatted - it is that you can't monitor the response by using those markers and that means you can't assume the disease process is no longer active. In fact the underlying cause of the inflammation is still active but unable to create inflammation - even Actemra doesn't CURE it. There is also the point that there are 2 other possible causes of GCA inflammation which don't respond to Actemra and half of patients need pred to manage the symptoms they cause.

[WaltzG in reply to PMRpro]

Scary! Thx