Hi all I was wondering what your experience was of CRP levels. I was diagnosed with PMR in Feb. I started on 15mgs of pred and asked to reduce to 12.5mgs after 3 weeks. I then had my bloods done. My CRP was 22 and is now 17, my GP says he thought it would have reduced a lot more. I have started to get pain in my shoulders again after a week. The pain in my neck has never really disappeared but was reduced. I am now back on 15mgs, to have bloods done again in 2 week. If no improvement he will refer me to a Rhumatologist. I am very lucky that I have a very supportive GP who discussed my case with his partners and has some experience of PMR. He was a little excited as he says it isn't often they see this condition. I'm not sure about that reading all your experiences. Sorry for the long post I wanted to give you the full story. 😊 thank you in advance.
How long does it take for CRP levels to reduce? - PMRGCAuk
How long does it take for CRP levels to reduce?
Hi, and welcome,
Your GP is partially correct, would expect CRP to decrease a bit more than it has, but if you have never got rid of pain, and it is now increasing as you’ve lowered dose, therein lies the answer.
Not enough Pred to -
a. mop up the built-up inflammation pre diagnosis, and
b. control the daily shedding of new inflammatory substances.
As he’s excited about your illness that’s good, it means he’s interested.
You might like to read this, and maybe show him.
healthunlocked.com/pmrgcauk...
Thank you so much DorsetLady. I have read the link very informative. I am struggling this morning with shaking and the fatigue is just evil. I have increased my pred today so hopefully will improve soon. I have gained more from this forum than any reading elsewhere its a godsend thank you all.
My CRP is always high and has never really reduced due to the pred. It seems to be a law unto itself. Doctors just say it is just me. I assume other people will have CRP reducing slowly.
Hello, also seems to me you’ve not been given a chance on the starting dose for it to be got under control and 15mg is still the lower end of the normal starting dose. 3 weeks isn’t much and some are only just getting to grips with their pain at this point.
So agree about the 3 weeks initially - as you well know, I am always wittering on about it not being long enough. But when it’s quoted in the guidelines, it’s difficult to get GPs or Rheumies to think outside the box.
I think it is a combination of being terrified of Pred and causing the patient harm and failing to really take notice of their patients’ actual experiences. Sadly I think the result is a higher cumulative dose of Pred ultimately due to flares than would have been necessary with a longer view; spoiling the ship for a hap’p’oth of tar. Still got the cruise ships out on your coast?
Yep, you’re right about Pred and usage.
Ships still about, but haven’t been down to see them recently...one day, one day!
The starting dose is dealt with in the 2015 Recommendations, so is the "individualised" management.
Recommendation 4 is not bad and does take all options into consideration - reduce to 10mg within 4-8 weeks, if that causes a flare, return to the starting dose and reduce in 4-8 weeks TO THE DOSE WHERE THE FLARE WAS SEEN.
But we all know the risks of that unless they jump quickly to go back.
Then there are these two bits in the summary:
"G: Every patient treated for PMR in primary or secondary care should be monitored with the following assessments: risk factors and evidence for steroid-related side effects, comorbidities, other relevant medications, evidence and risk factors for relapse/prolonged therapy. Continuous documentation of a minimal clinical and laboratory dataset should be conducted while prescribing GCs. Follow-up visits are suggested every 4–8 weeks in the first year, every 8–12 weeks in the second year, and as indicated in case of relapse or as prednisone is tapered and discontinued.
H: It is important for patients to have rapid and direct access to advice from doctors, nurses or trained allied healthcare staff to report any changes in their condition such as flares and adverse events"
You can't even speak to them on the phone most of the time ...
Trouble is, I think the 2015 are entitled “recommendations” - and I do wonder whether that’s too wishy washy a title. I know guidelines/recommendations are synonymous- but they don’t seem to be perceived by many as such.
As we’ve seen all too clearly in recent times with covid, recommendations are seen as “take it or leave it”.
But as you say, if you cannot speak to anyone, it’s irrelevant anyway.
I think you are very lucky to have a Doctor than understands the importance of checking your bloods against your medication before reducing it, I started with this in September, I only had my bloods done again today yet me meds have been reduced to 7 all my pain has returned. I'm glad for you also that you have been referred to a Rheumatologist because this is what is meant to happen if your levels are not stable.
Actually the absence of symptoms is the most important thing in reducing - not just the blood markers. Both should be considered, but blood alone don’t tell the full story, some patients don’t have raised markers, and those that do, find they invariably lag behind symptoms.
If all your pains have returned, what are you doing, or have been advised to do about that?
You shouldn’t continue with reducing, if you have pains, they will only get worse - you need enough Pred to get the inflammation back under control - and if you aren’t getting the correct medical guidance, you may need make your own decisions on tapering.
I have insisted that I get a face to face consultation with a doctor, because all I have had is telephone consultations with Doctors who ask exactly the same questions regardless of what I have said in the past, they really don't seem to care that I am in pain, but I am not qualified to regulate my own meds.
Well, you’re probably more qualified to regulate your meds than they appear to be - but I know what you mean.
As you get to know your illness, and IF you have sensible doctors who give you leeway to monitor and adjust your medication, you will have the confidence to do so.
When you get a F2F appointment you need to have details of what’s happened with your pains, what level they returned etc. Suggest you write them down - succinctly- and give paper to GP, so they can see exactly where you are, and also ask them to get receptionist to scan into computer, so it’s on your records for future reference.
I got the appointment with my doctor after the blood tests he said that there had been no flare i was still on 25 whatever that means, which he said was the same as the last two tests I had, but one test was done in September when I was first diagnosed and the other was done in October exactly one month later when the hospital could not find my blood notes, by then I had already started to taper 1mg every three weeks and I had not had any other tests until last week when I was sent to check why my paid had completely returned. I was angry with the doctors because I knew I was not getting any tests before regulating my pred. I have now been put onto 20mg to see if there is any difference I'm on day three, I feel worse my shoulder and arm feels worse and I have neck and shoulder pain, and an horrific head ache. I am now worried that its something else not PMR at all and he is not convinced either. I will be going back for another blood test after I have been on 20mg for a week to see if this increase did make a difference. Wish me luck.
Hi, I think it might be a good idea to start a new thread on this - then everyone will get notified and you’ll get more feedback.
Just summarise what’s happened to date - start dose, tapering etc and then copy & paste above reply.
Sorry to give you extra work when you probably don’t feel like it, but you’ll get more help - and that’s the main thing.
ill wait till i see him next then keep everyone updated, your right I am a bit upset, cant do anything today I feel that bad.
"an horrific head ache." - is that not giving them pause for thought? If it might be PMR - it also might be GCA.
I have already had test for that in October was find it was just an adjustment with my glasses, the head aches returned now that I am taking 20mg Pred
It is now MARCH!!! Things do change - but did they decide it is due to the pred maybe?
But just a sight test is not enough if that’s what it was - you need an in-depth look - and as PMRpro rightly says - things change.
Oh dear - it will reduce quickly if the dose is high enough and is well above what is needed for the disease activity at the time. Then to reduce after only 3 weeks - PMR doesn't run to any timetable but its own and you have to get the symptoms as well under control as possible BEFORE reducing - and you check the blood markers (if you are going to use them) BEFORE you tell the patient to reduce - they should be down to the realm of normal first.
Offer your keen little bunny this:
rcpe.ac.uk/journal/issue/jo...
which is a good basis but also point out Recommendation 3 here:
ard.bmj.com/content/74/10/1799
where they suggest higher starting doses are appropriate.
Doesn't often see it? Has he got a practice of teens and 20s?
This made me giggle PMRpro 😆 he did say it isn't a big dose and referred to asthma attack where they have a much bigger dose. I will see how I am over the next few weeks. Have to say I feel terrible today so I definitely need to increase. I have literally just been to the supermarket and am wiped out now. Can't believe I said I would go back in work on Monday 🙈.
Hi all hope you are well. I just thought I would up date you. I went back up 15mgs been on it for a week I think now and am feeling much better except slight neck pain and this headache. That is remarkable to say I have a chest infection also, antibiotics may be help. That is probably due to being run down from the fatigue 😩. Am I right in thinking I should stay on 15mgs for at least 4 weeks before reducing down again?
You may not need 4 weeks - you could think about reducing once you feel better. But given the history so far - I'd stay at 15mg for 4 weeks AND I'd only reduce 1mg at a time. It may have been the chest infection but you need that cleared properly too.
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