I saw a few people still taking pred saying their doctor said pmr was gone as no measurable inflammation, but when I started pred I think one of the blood tests after starting was to check inflammation was reducing. So if you are still on pred isnt no inflammation irrelevant?
And should it be checked from time to time? I just had some blood tests as waking very thirsty and going to loo many times a night so I was worried about blood sugar....that was OK and they did a few other basic tests, also all fine, but not the inflammation ones.
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Excelsior80
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Sure PMRpro will explain much better than me, but inflammation levels aren't tested regularly in normal life - however there usually is inflammation in your body - some good, some bad and your immune system regulates them.
When we are taking Pred, that dampens down the immune system and the inflammation level, whatever is causing it - so the readings may not be accurate.. they may be artificially low - or very high. the idea of the pred is to get them back within 'normal levels'
This link gives more info and what "perceived" normal levels are -
brilliant, many thanks. My doctors were a bit embarrassed ... the ESR failed twice due to a new type of test tube they couldnt get on with (probably sorted now) ....but said plasma viscisity similar info and that and CRP high at the start but not really really high like some people.
It just gets sent off with my other tubes of blood and then a note comes back saying FAILED. So I haven’t a clue what is wrong. They might have just dropped it or it rolled under a cabinet!!
Well of course - if they drop the tube or even shake it too much it affects the result. And it must be done within 4 hours of being taken - which isn't long ...
If you are on pred and the markers are low, the only thing you can take from that is that you are on enough pred to suppress the inflammation. Nothing else - and certainly not that the underlying cause of the PMR symptoms is burned out and you are cured. Even 1/2mg of pred can be enough to scoop out enough inflammation every day so that the dripping tap of inflammation doesn't fill the bucket so it overflows.
It is all very well claiming the PV tells you the same - but no-one has actually looked at it in vast numbers of patients and how it relates to you. With ESR and CRP, some patients NEVER get raised values because they simply don't "mount the acute response" as they put it. No-one knows why - like in a lot of medical anomalies - and that is why they should never get so invested in lab values that the symptoms are ignored.
The normal range of ESR isn't a range for an individual - it is a range of the values found in a large population (10K is common) that includes 95% of the results collected. Mine is normally about 4, if it is running at 18 it is very raised for me - but still within normal limits according the rubrics so the average doctor wouldn't be concerned. One of the important aspects of leaving a patient on the starting dose of pred long enough, is to find what THEIR lowest ESR is. That's how I determined mine is 4, that is the lowest I achieved with pred. If it rises from that baseline - watch out, just in case.
thank you ... makes sense .... should I get these markers checked from time to time? Apart from blood sugar worries recently ive had no blood tests since the start 6 months ago. But I've booked a checkup thus week so I could ask.
someone i know who had pmr a few years ago and relapsed a few months ago said it was non stop blood tests last time, this time nothing. Wondering if policy change or NHS cuts.
I’ve been on the base dose of 15mg a day for 10 weeks now and I’m wondering when my GP will start me tapering? I was hoping to be a at 10mg a day by the new year. Looks that won’t happen if the reduction is 5mg in 4 weeks. I missed a 5mg dose (split dose of 10mg at 2:30am and 5mg at 2:30pm) and I got sore butt pain for 3 days.
I'm very surprised they haven't started already - 2 months is the usual maximum at the starting dose, even at 15mg which is the lower end of the range, and then the usual is to 12.5mg for a month and 10mg for a month - always supposing you can manage those drops, many can't. But don't, whatever you do, allow them to reduce the dose in one fell swoop of 5mg!!!
I don’t ask for blood tests for inflammation markers as I go by my symptoms. I have my kidney function tested every 6 months and an annual review which is a full blood count and hba1c.
I am a bit similar. There is a lot of ‘publicity’ about those who don’t usually have raised inflammatory markers but there is also the category of people like me who my rheumatologist describes as having extra sensitive ESR and CRP responses. So yes another reason symptoms are so important.
I've never had raised ESR or CRP. I suspect that was why the rheumatologist was telling me that my PMR had gone after 6 months on pred, even though I had the miraculous response in symptoms when I took my first pred. He just said that I had it and it had gone. My symptoms say otherwise and I don't believe him. Funnily enough, about 5 years before diagnosis, I had a blood test for another reason, and I was told that I had raised markers, but at that time, no reason was offered or action taken. In retrospect, I am not surprised as I have had PMR symptoms on and off in a flaring and remitting pattern since early 40s. I've always thought that there must be an acute phase where the markers would be raised and for some people, it doesn't show up if you miss that window before you are tested. It took about 20 years before anyone took my pain, stiffness and fatigue seriously and I suspect that I fell into that old camp of being a perimenopausal woman with aches and pains and they were thinking, what do you expect?
"I fell into that old camp of being a perimenopausal woman with aches and pains and they were thinking, what do you expect"
I got that from my GP - I was 51 and at the gym or a class every day! And suddenly - I couldn't. It took me 5 years to find out for myself what it was and even then the rheumy I saw made it obvious he thought PMR was beneath him. Until a few months before it started I had been on HRT but made the mistake of stopping it. Bad decision.
Interesting what you say about HRT. I tried it, but I couldn't continue, it brought the endometriosis back with a vengeance. However, I do use the pessaries and I have noticed that I feel better on even that tiny amount of oestrogen. I sometimes forget to use them for a while and I do notice the difference.
My Vasculitis Specialist tells me that a reduced inflammation levels while taking Prednisolone does not show that my Vasculitis is cured by rather the Prednisolone is working as intended.
I have blood tests every two months to make sure my inflammation levels are in the acceptable range and adjust the Prednisolone dosage accordingly. I am currently of 5mg of Prednisolone plus 25mg of Methotextrate via weekly injection.
My GP doesn't really understand the treatment regime with Prednisolone and relies on the 3 monthly report that my Specialist provides to him.
I definitely would not allow my GP to interfere with my Prednisolone or Methotextrate treatment.
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