Hi. I am new here: I was diagnosed with pmr this... - PMRGCAuk

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Hi. I am new here

mustcarryon profile image
10 Replies

I was diagnosed with pmr this month and am trying to get my head round it. It's somewhat difficult having a telephone conversation instead of face to face. Can anyone tell me about the blood test results i have had , my first one a month ago my esr was 47 last week it had dropped to 16. I know the reading is to do with the inflammation in my body, 47 is too high, but is it a dangerous level and is 16 normal. I would be grateful for some feedback.

Cheers

mco

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mustcarryon
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome

The problem is, as individuals, we don't usually know what our normal is as it's not a test that is done when you don't have anything wrong. Some people's are a lot lower normally than the averages stated.

From Patient uk 2018 - Both tests of inflammation .

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.

So at 47 yes your ESR was high, but many have had it a lot higher than that at that beginning of their illness, so don’t panic. As you can see it is lowering as the steroids start controlling the inflammation.

This link might give you more info about your PMR generally- healthunlocked.com/pmrgcauk...

mustcarryon profile image
mustcarryon in reply toDorsetLady

Thanks Dorset lady. I'm going on that link now

PMRpro profile image
PMRproAmbassador

The level itself isn't dangerous - it is a measure of something going on and that may be because it is acute and severe or less severe but chronic and been present a long time. Inflammation in the body makes the liver produce certain proteins - CRP is one and it contributes to the reading you get for ESR, erythrocyte sedimentation rate which means the speed at which red blood cells settle to the bottom of a vertical tube. More of these proteins on the surface of the blood cells make them stick together so the size of the solids is bigger and they sink more quickly. Once the inflammation (or infection) reduces, there is less of this protein, and the ESR falls. 47 is quite high, 16 is now within normal range - but that is a range of readings obtained from thousands of healthy volunteers. If my ESR is 16 it is high for me but it may be low for some other people.

But ESR is a very non-specific test, it can be raised for a whole range of reasons including just a simple cold and even stress can make the CRP go up and so the ESR go up. Even the way the blood sample it treated can make a difference - the test must be set up within 4 hours of the blood sample being taken or it isn't reliable.

The fact it has fallen so far so quickly shows the dose of pred you are taking at the moment is enough and that the inflammation in your body is reducing which is what they want. The ideal is to leave you at that starting dose until the ESR and CRP have fallen to normal levels and stabilised. Then you can start reducing the dose slowly - smaller steps are better than bigger ones and not too often. Again, ideal is to check the ESR before every reduction step to be sure the latest dose was still enough. If the ESR starts to rise again it suggests the dose is now too low to manage the new daily amount of inflammation that is being created. The pred doesn't cure anything, it manages the inflammation and the next step is to reduce slowly to find the lowest dose that manages the symptoms as well as the starting dose did. The ESR is also an indicator but it might go up if you have a cold or something so one raised figure doesn't mean you need more pred, but a rising trend over a couple of months possibly does mean more pred is needed.

RoadTrip profile image
RoadTrip in reply toPMRpro

I am only able to get CRP and Plasma Viscosity, rather than ESR. I assume they work in a similar sort of way?

DogAgilityObsessed profile image
DogAgilityObsessed in reply toRoadTrip

Same as here. I think the “normal” range is 1.5 - 1.72

RoadTrip profile image
RoadTrip in reply toDogAgilityObsessed

That’s what I have read, my initial reading was 2.53.

Someone else who can’t sleep!

DogAgilityObsessed profile image
DogAgilityObsessed in reply toRoadTrip

I wake up at this time every night for about half an hour or so.

RoadTrip profile image
RoadTrip in reply toDogAgilityObsessed

Unfortunately, this is me up now, for the night. On high dose 60 mg at moment, so hopefully will sort itself out when start reducing further.

PMRpro profile image
PMRproAmbassador in reply toRoadTrip

CRP is standard. When PV started to become popular and ESR criticised I think there was some work that showed that, for the individual patient, the ESR was a good way of tracking their PMR activity. Crucially, there is little work about how PV responds to an increase or decrease in inflammation in PMR. The main problem comes for a patient who moves - PV is by no means so widely available as ESR and switching from one to another may be confusing.

piglette profile image
piglette

I am sorry you have been diagnosed with PMR. It sounds like the pred has reduced your inflammation levels well. Mine was over 100 at the beginning. How do you feel, have you improved enormously? You should also ask your GP to prescribe Vitamin D with calcium as a side effect of pred can affect your bone density, if the doctor has not already done so. Take things slowly and then build up, if you have any problems just stop, don’t overdo things.

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