It’s happened twice now, and when queried why I haven’t been given a proper answer, other than that’s all that was requested. My CRP was 16 and ESR 35 on 27/9/22. A week ago CRP was 10 by blood analysis, but ESR was not tested. It doesn’t paint a complete picture for me.
I’m on 2mg steady state, at the end of a DL taper. I hope to try another step to 1.5 but wonder how long I should dwell at 2mg.
Any thoughts?
Over my time with PMR my ESR or CRP did not show any elevated levels even when I knew I was having a flare so my doctors said I don't have PMR any more. The steroids I was taking masked this. They are not interested in adrenal insufficiency or adrenal fatigue or how I felt and what my symptoms were. The test said I was ok so that was that. That's one of the hardest things I have had to come to terms with on this journey a total disregard of the person presenting in front of them and just looking at lab results which are not gold standard. I am not alone many patients do not have elevated inflammatory levels once they are on steroids unless the condition escalates to LVV or GCA.
My point being some doctors don't even test for CRP/ESR or monitor it with 3 monthly blood tests especially since COVID when you couldn't get in to have one when we managed the steroids and tapering ourselves.
NO-ONE should have elevated ESR/CRP if they are on the right dose for their PMR/GCA!!!!
And symptoms ALWAYS trump blood markers ...
Stay as long on 2mg as you want, I generally found I could step straight from one taper to the other, but occasionally did stay longer if things didn't feel "right" or if I knew something on the horizon might be an issue.
As for blood tests, my GP only ever did ESR the main, think it may depend on individual surgery and/or costs.. something to take up with them if you aren't happy.
From some posts on here, many would be happy just to get one test done in these odd times....
Many doctors deem ESR to be so unreliable and non-specific that it isn't worth it. Unfortunately - CRP isn't that much better and at one point a study actually found that ESR was preferable for monitoring PMR! Since for most things they'd probably choose CRP, it saves money to just do one of them. My CRP only ever rose once - on a day when I also had some severe arrhythmia. My ESR rarely went out of normal range although it was raised for me. It is important to do the one that means most for you personally and to do it consistently.
Try showing this paper to your practice:
How do you feel? I reduce if I feel OK and that I feel,I am ready to reduce. I do not bother about my inflammation markers particularly.
Prior to my current DL taper (on wk 4 of 5) the previous attempt of a reduction from 2.5 to 2 (about 2 or 3 months ago) didn’t go well, I felt dizzy on 2 but fine on 2.5mg. This latest attempt is working better, but at bed time, as a side sleeper, I can get discomfort in my arms, right particularly as I’m right handed and it does the most. The discomfort is mediated by paracetamol which is a good sign, so I guess it’s adrenal not PMR.
Prior to moving house/home at the end of September I was getting pain on the left side of my head and over my eyebrow. Being concerned I consulted my GP who wanted me to go to A&E. It was the day before our move and the stress was horrendous as you’d imagine. I discussed with my wife who also follows the forum here and she said GCA is severe headache, not the mild grade I was experiencing (how do you classify degeee of head pain if describing to a medic, or here?) so I did not attend A&E. Once we had moved and settled after a week or so the head pain disappeared. I discussed with my new GP (I’m in North Yorkshire near York) who said if I get the pain again I should go. A few days ago I had an eye exam an the optician said my eyes were healthy.
The backdrop of all this makes me nervous, and as far as meds go I’m thinking another 3 or 4 weeks before a 2 to 1.5 taper. 0.5mg is a really big step both arithmetically and for the body.
Apology for the long reply.
Edit: For completeness, I’ve had PMR for 3 years, Pred for 2 years 11 months, starting at 15mg.
GCA is certainly sever, and not like anything you've ever encountered before...I can assure you.
But as for next reduction, agree sensible to stay at current dose (or what will be when you get to week 5) for a while longer than usual.
Just a reminder, there are 2 longer versions of my taper if you are nervous. One covering 7 weeks (which I used as my last one 0.5mg to zero) and the ultra slower one of 14 weeks- which is just repeating each week of the 7 week version.
You have choices...😊
Sounds good, I’ll search for your 7 week version. (Under taper plans I imagine.)
My previous GP said anything below 5mg doesn’t cause permanent damage, so 2mg should be ok.
As an indicator, my eye ball pressure which sat at 20/21 when on higher doses has come down to 14 measured on Tuesday.
Good on the eye pressure.
Tapers here - healthunlocked.com/pmrgcauk...
If I emailed excel s/sheet to you, you will already have them unless you ditched...
Thank you DorsetLady! I’m quite comfortable with XL so will create the spreadsheet of the 7 weeks version. I already use the 5 week chart and I keep it with my Pred. 😊
The maxim is ‘lower - slower’ isn’t it! I’m sure I’ve read PMRPro say this many times, you and others probably.
indeed we have -and do -and no doubt will continue to!
We can be quite boring like that! 
I can do boring😳
Me too - and serious. And responsible ...
😊
If it is any consolation, York has a GCA pathway if you go to the ED - Scabs has it too but some things are only done in York as it is the parent hospital. Where are you? Were you oop north before?
I'd be inclined to say that at that dose it was the stress causing it all. Given that moving house is one of the 3 most stressful life events - your adrenals were being thumped even if you weren't a long term pred user.
In a village just outside, about 9 miles to the west. We have a York post code but pay our council tax to Harrogate. My current GP practice said to go to Harrogate A&E if I get recurrence. But now you’ve said what you did, I might head to York.
What is a GCA pathway BTW?
The optometrist I saw recently said the opticians (Spec Savers) are open 7 days a week and can fast track patients if GCA is suspected. Whether that bypasses being triaged I don’t know.
[Prior to the move we were in Southport.]
A GCA pathway is just a protocol to ensure that all the necessary tests are done and means they are aware - which is more than a lot of EDs are. I'd probably support the concept of Harrogate for most things - queues MIGHT be shorter! For GCA you should get the same management as at Scabs and they transfer the patient to York by ambulance if that is required, The SpecSavers option will be the same eye exams as you would get at hospital - I imagine they are part of the emergency system. They still close at 5.30pm though
primaryeyecare.co.uk/servic...
It may not bypass triage - it means you get to triage and immediately pass go and they should be waiting for you. In Yorkshire they even train paramedics to recognise potential GCA!
When l lived in Wales they only tested CRP at GP Surgery but ESR was done at my hospital visits though l did have other routine bloods because l was/am on MTX - they did Plasma Viscosity in place of of ESR as that was an option in the Record Booklet…..
I only ever have ESR done
I Googled GCA pathway and came across what I’ve attached below which may be of interest to others.
Thanks…
Regarding CRP and ESR, I was told by a GP that they don’t order the ESR test anymore, which was a surprise to me as I worked in a hospital laboratory many years ago and that test was ordered all of the time. I have since found out that they are not able to order both the CRP and ESR at the same time (to do with coverage by our provincial medical plan in Canada), so they have to choose one or the other, so CRP was chosen for me.
Whereas ESR is probably cheaper and - as I mentioned further up - more relevant in PMR.
I am in Canada too, maybe a different province, but my ESR and CRP have both been routinely tested over the more than 5 years I have had PMR.
I’m in BC. The only way I was able to finally get an ESR test was to have another doctor request it (This GP let me know about the MSP limitations). The rheumatologist has a monthly standing order for a CRP blood test, so I had both done at the same time once.
Except for my initial tests when being diagnosed the doctors in Nova Scotia aren't even allowed to prescribe both CRP and ESR at the same time.
And, speaking of the lower the slower, I've been taking 2 mg for months now, and it finally occurred to me that maybe I could attempt another taper to 1.5! After all this time I'd kind of forgotten about tapering. Can you imagine? 
If you look at the pathway relating to GCA
valeofyorkccg.nhs.uk/seecms...
‘Where there is clinical suspicion arrange a biopsy at the same time as ordering blood tests
• C-reactive protein (CRP) The CRP level is typically elevated and may be a more sensitive indicator of inflammation than ESR in some people with giant cell arteritis. Do not order an ESR as well.
• Full blood count - Normochromic normocytic anaemia and an elevated platelet count are common and indicate chronicity.
• U+E
• Liver function tests’
I seem to always get both. At the beginning of my illness, both were crazy high. 2.5 years in, ESR always seems be to good, CRP always slightly elevated.
My GP measured ESR only when trying to diagnose me. It was slightly raised, so nothing was done. (21). As my symptoms got worse, I then asked for CRP to be tested as well. ESR 66, CRP 52 and raised platelets. I was diagnosed with PMR and prescribed 15mg pred. One month later, all stiffness gone, but still a mild headache. I was sent to the Urgent Assessment Centre where ESR 78, CRP 58. I was diagnosed with GCA and given 40mg pred. Now I am assigned to a rheumy and get both ESR & CRP measured every 3 months along with all the usual blood checks.
GCA: My initial test by GP looked at both. My NHS consultant asked for both to be done by GP and definitely my private consultant asked for both. I find it useful to cross reference. (I have had one consultant say CRP best, another ESR) I would ask the GP directly for both and see what happens.
I always have both tested except for last year when there was a blood vial shortage and then only ESR was tested. I’m back to having CRP & ESR tested every 3 months together with a full blood count, liver, kidney, HbA1c plus vitamin D once a year. I do have to ask for them every 3 months, via askmyGP, otherwise they wouldn’t be done.
Have you had any other symptoms in the last 14 days , not just PMR or GCA symptoms , which could have caused a temporary rise in your inflammation?
I read through some of your other replies and the headache you experienced has all the hallmarks of a classic migraine brought on by the stress of the move.
Acute Migraine which is incredibly painful , and involves various other symptoms can happen to everyone in times of intense stress.
Your current night time joint pain could be related to activity , the cold , low nutrients, and joint inflammation from you doing more activity as you recover because your joints and muscles are still in recovery after a period of less activity. This seems likely if it responds to paracetamol and occurs more often at night.
There could be a lot of reasons for your raised markers for a few weeks , even an underlying infection which may not have caused other symptoms , osteo arthritic issues , etc, etc. The fact that your CRP has begun to reduce is a good sign. Not knowing the cause though , and as you are doing well on a slow taper , it would be sensible not to taper at this point .
Remain on the 2 mg , pace your activity, and continue the nightly paracetamol, also make sure you are getting the recommended water a day , and it may be wise to increase your Vitamin C and general vitamin and mineral intake in case you have had an infection or are suffering from low nutrient levels.
You could ask your GP to test both markers again in a few weeks time. If you still feel that your symptoms are steady , have no increase in PMR specific symptoms and your inflammatory markers have continued to decrease then you could try the next taper.
Although , my experience was always to hold off on a taper at a time that involves a lot more stress and activity.
Stress is not just a bad thing , but any activity that is good or bad , that is more than your body or brain can cope with at its current health level.
That can include moving house , weddings , holidays , trips and, of course , extended periods of festivity, like Christmas.
I never change any medications , or try a taper of anything, between December and the first week of January, because I know , even if I pace myself , Christmas and it's preparation causes a lot more physical and mental stress , even if you keep things low key.
If I were you , I would probably decide to continue the taper from January and spend the next few weeks building up your body strength , your nutrients and your energy to enjoy a well paced holiday and then be able to have chance of a more successful step down in dose. But that's just my tip , you need to choose what feels right for you based on your symptoms .
Take care , Bee
Thank you very much for your very helpful, considered message, helpful to me and many others here I would imagine. 😊
Hello Exflex,
I was interested to see that you have had the same experience as me. The second to last time I had blood tests I noticed that the CRP was given, but not the ESR. I asked for an ESR test and was given one, but I have just had some blood tests and once again the ESR was absent. As my CRP was low (5), I was not too worried as I presumed that my ESR would also be quite low, though unhappily there is always a disparity between the two. I went to see my doctor with discomfort in my head, neck and arm, which made me worry about GCA. I have been referred to another rheumatologist.
If there is a disparity between the two for you - which is the more meaningful? That is the one YOU need.
In the pathway document linked above, it says CRP is preferred blood diagnostic for GCA, also liver, kidney and certain components of full blood. (I don’t know if this is helpful or not for others to read.)
It may be preferred - but the one that works for YOU is the one that is needed for monitoring. I would never have been diagnosed with anything with CRP, mine only responds to cardiac problems for some reason. Some patients simply don't mount the acute phase response that would raise the CRP and if the CRP isn't raised, the ESR is unlikely to show anything dramatic. Unfortunately, a lot of doctors place far too much reliance on lab results and ditch clinical skills. Possibly because they don't have (m)any.
Thank you PMR. Last time when it was missing from my results, I asked for an ESR test. I’m rather hesitant to ask for it again as it looks as if they insist on only having the CRP. If my CRP had not been so low, I would have requested the ESR, but I can only presume that the ESR must also be on the low side. The next time as they only prefer to do one test I will ask them to do the ESR and not the CRP.
Asking for ESR & CRP numbers
ESR/CRP
CRP & ESR
Raised CRP ESR
ESR and CRP
