High ESR

[piglette]

I had a cold earlier this year and my blood inflammation counts shot up ESR 52 and CRP 40. A couple of weeks later it was ESR 60 and CRP 13. PMR was fine. My latest results are CRP 5 but ESR is 54, PMR is still fine, but my GP wants me to visit a rheumatologist to reduce my ESR. Does anyone know what a rheumatologist would suggest to do this?

[Celtic PMRGCAuk volunteer]

Piglette, CRP is supposed to be the more more reliable marker of inflammation in your body, and certainly your latest CRP result is excellent now that you have got over your earlier cold.

Your ESR is somewhat raised and I can understand your GP referring you in the hope of getting some answers. As it sounds as though your PMR symptoms are under good control, perhaps there is something else going on to cause a raised ESR. On the other hand, perhaps it is 'normal' for you, especially as you say you are feeling well. Few of us know what is a 'normal' ESR for us as we probably haven't had need of the test prior to PMR/GCA.

As to what your rheumatologist will suggest, I can only think he will suggest carrying out various blood tests just to rule out anything other than PMR going on in your body.

[PMRpro Ambassador]

I think your GP is in cloud cuckoo land to be honest - he is as capable of starting to investigate why you have a raised ESR as a rheumatologist who will just have to do other tests and probably send you back to the GP to have most of them done.

One of the warnings in the literature is that there should not be a knee-jerk reaction to raise pred on the basis of raised acute phase reactants (ESR and CRP) in the absence of symptoms. Your CRP is fine - it suggests that there is another reason for the ESR being raised. There are all sorts of non-specific things that will raise ESR - colds and other infections being just one reason. What was your ESR before the cold when it went up?

If the ESR isn't measured within 4 hours of the sample being taken then it will affect the reading - is it taken at the GP practice or do you have to go to the hospital? How is it collected by the hospital lab? How far is it and when are they collected? My practice took bloods all during the morning and then they were collected at the end. If a sample was taken early and didn't get booked in quickly enough it wouldn't be done in 4 hours. That doesn't matter for many things but it does for ESR.

[piglette in reply to PMRpro]

Thanks PMRPro. My ESR at the end of last year was 45 before the cold. The lowest my ESR has ever been is 33. The highest is 127 when CRP was 123, that was when PMR was diagnosed.

I have my blood test at the GP practice although I always ask for the last appointment before the pick up to the hospital which is in the afternoon. Of course I don't actually know what happens after that! It is about ten miles to the hospital.

[PMRpro Ambassador in reply to piglette]

I would say that obviously you have a "naturally high" ESR - and that since the CRP is in range there probably isn't a massive amount to worry about. But no doubt your GP is panicking about it being outside the range - which about 5% of patients will be anyway. How long is he happy to wait? I bet it will be months until you can see a rheumy !

[piglette in reply to PMRpro]

I am not sure how long my GP will wait. She is actually a trainee GP and is trying to be very assertive, as if she knows everything. I am not sure she has come across anyone with PMR before me and she admitted she did not know much about steroids.

[PMRpro Ambassador in reply to piglette]

Oh dear! Funny, there was a blog post about that today but the other way round - about how they are so scared on their first because they think they don't know anything. Maybe that's the trouble - she hasn't realised that actually patients don't mind an admission that they don't know much. Really don't know what she thinks the rheumy is going to do to reduce the ESR though!

[piglette in reply to PMRpro]

I don't actually think she knows what the rheumy will do to reduce the ESR, but as she doesn't, she is dumping it on someone else!

If my ESR or CRP goes up or stays the same she suggests I increase the pred dose even if I am fine, she messed up when she first joined last year by telling me to reduce too fast and so now she is going to the other extreme.

[PMRpro Ambassador in reply to piglette]

Ignore her! And offer her some bedtime reading for the benefit of the next poor sod she meets with PMR!

Start with the simple stuff:

rcpe.ac.uk/sites/default/fi...

Then tell her to progress to

Research and Guidelines

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ and the BSR/BHPR Guidelines for the management of GCA.

telling her to read the Mackie and Mallen review.

[piglette in reply to PMRpro]

Thanks PMRPro. She has got a copy of the Bristol paper.

I think she has read something about steroids as she said as I was on steroids I should have a DEXA scan. I pointed out to her that I had already had one last year and that the NHS was unlikely to rise to another one just yet. Looks like she is not even able to read my notes.

I think my belated new year resolution should be to ignore her!

[PMRpro Ambassador in reply to piglette]

Develop the nodding head response! That habit of not reading your notes infuriates me.

I turned up for the second rheumy appointment to continue (I thought) the investigation into what I had. I walked in the room after a 2 or 3 hour wait on very hard chairs to be met by someone I'd never met before. For the next 15 mins he asked me the same questions I had been asked 6 weeks before and repeated the identical examination. With the same results - except he mumbled something about not knowing what it was, he'd have to get the boss. I'd already given him the diary of the response to pred - starting with being able to walk down and up stairs normally after 6 hours. Both of them ignored that totally.

It transpired he was a "GP with a special interest in rheumatology" - as I pointed out, I had that at home in the practice without travelling 30 miles to the hospital and sitting around half the afternoon to have nothing new added.

I was not impressed. I never went back. I left for Italy instead...

[Old_Bedfordian in reply to PMRpro]

These two links that you mention here were really worth a read. I am much obliged.

I wonder if I should give a copy to my GP.

[PMRpro Ambassador in reply to Old_Bedfordian]

Possibly depends on the relationship you have with your GP - will they get offended? They are aimed at them but I doubt many have read them even though they need to.

Sarah Mackie is on a crusade to educated the GPs who are the first to meet the patient with PMR or GCA and who really do need to know. She is a rheumatologist - but most rheumies I've come across don't have half the knowledge about PMR/GCA she does so I keep telling her she needs to educate her peers too!

[Old_Bedfordian in reply to PMRpro]

wow, we learn something everyday. ESR needs to be measure within 4 hours of the blood being taken. I wonder if my GP knows that. Mine was taken on Monday morning at 8am in Bedford. I would lay a good bet that it never reched analysis before end of close of play.

I wonder how many GCA or PMR sufferers who have low ESR on their medical papers for this reason.

Thank you for this, I will mention this fact next time I see her.

By the way, I recently read that the biopsy for cutaneous vasculitis needs to be taken in a certain window of time from when the breakout occurs (American College of Rheumy).

[PMRpro Ambassador in reply to Old_Bedfordian]

If it can't be done in the time frame it is better to use the plasma viscosity analysis - but not all labs do that which is a limiting factor obviously. CRP should be more relied on then - it is influenced by far fewer factors. My husband is of the opinion that ESR should be consigned to the history books - harsh, but if medics can't get the idea it isn't particularly reliable other than telling you something is wrong what else can you do!

[Old_Bedfordian in reply to PMRpro]

This is a good point and another to tell my GP, why have I not had a CRP measurement, I shall ask that as well!