Been on pred for a fortnight now. My crp was 28 before I started pred (although it has been over 50 in the past). Rheumatologist put me on 15 mg but I still felt bad after a week so increased it to 17.5. After a week at that dose my crp is 15. So things are moving in the right direction but should I up the dose to 20 to try and get crp normal? Rheumatologist just said 15 for a fortnight then reduce to 12.5 for a fortnight. But in answer to my last post on this forum it was suggested that guidelines state you can start on more than 15. Don't know what rheumatologist bases initial dose on. Seems a bit random to me. Also hard to contact him for advice. They aren't very accessible!
Many thanks.
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Jontie
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As you've only been on Pred for a fortnight, maybe it hasn't yet got full control of the inflammation caused by PMR - your CRP reading could indicate that.
Although 2 weeks seems to be the recommended time before 1st reduction, as an old hand I always think a month is much better - gives the initial dose time to get control of inflammation.
As you have already increased to 17.5mg, I wouldn't recommend increasing again until you have spoken to Rheumy, or at least his dept or your GP.
You need to give the Pred time to work, for some there's a miracle reaction, for others it takes a bit longer. Are you still having symptoms, or is it just the high CRP reading that you are concerned about?
You're correct in saying that 15mg is the "recognised" starting point in most cases of PMR, but obviously there is "wriggle" room should the Rheumy consider it necessary. That is based on his experience and individual case.
You obviously won't be considering reducing until things have settled.
Thanks Dorset Lady. Yes still getting symptoms but not as bad. I think you're right. I'll stay on 17.5 and see how it goes. In theory, if I followed the rheumatologists prescription I would be reducing to 12.5 tomorrow. He didn't say anything about dosage being symptom dependent. Fortunately I've read a lot on this forum and I know that I should stay on a higher dose for longer than 2 weeks. As always, thanks for your advice.
The longer I'm on here and the more posts I read, the more I despair re the advice, or lack of it, given by some Rheumatologists.
Symptoms are the key to almost everything you do with PMR. If you have them, to any significant degree - not everybody gets 100% relief, but should get at least 70% - then you don't reduce. Simple really! If you have symptoms, then your inflammation isn't under control. Blood markers are then usually used as confirmation of that - but unfortunately they can be raised by other factors, so are not 100% accurate.
If my memory serves me right I think the BSR guidelines I had (recently updated) said something along the lines of -
"reduction plan should be followed provided no symptoms are present..."
not plough on regardless - which some experts seem to advocate!
Actually it's inflammation in your body that causes the high readings.
Inflammation can be caused by many things, it's when something whether that's a virus, a sore throat, arthritis, a cut (major, say operation, or small) or even graze occurs, and your own body tries to heal itself.
Normally we wouldn't realise what's happening until the inflammation causes pain. Your ESR and CRP are not tested on a regular basis like blood pressure or cholesterol, so unless you have a tangible problem you really don't know what your "normal" is.
One of the biggies is Stress! Constant psychological, emotional or physical stress raises the level of cortisol, creating inflammation.
Thanks. I'm working on the biggest factor...stress. New York City is not conducive to calm. As I was backing into a parking space someone made an illegal U turn and stole my spot. Of course, I had a fit, got out of my car and yelled at him. This was followed by a twinge of shoulder pain. Resting on my bed with my dog and learning how to enjoy quiet time. I'm up for the challenge despite slip ups! I appreciate your wise advice. Wish I wasn't a slow learner!
I'm sure you're no slower a learner than most of us.
With regards to stress, my markers shot up during my journey with Pred, no flare, no pain, no symptoms.
GP had a bit of a panic, increased Pred, re-tested markers - still climbing, so upped Pred again. Eventually went back to normal.
It was only months later I realised the raised ESR/CRP readings were due to stress - my late hubby was in and out of hospital and very poorly over that period.
So anything you can do to reduce stress is good, but not always easy in this mad world we live in. That's where your dog comes into his own- enjoy!
It just occurred to me that my 12 year old blind dog has a gorilla on her back in the city! She prefers the calm and quiet of the suburbs. She got the same tummy problem last time we were here! She probably suffers from PMR just like me!
After yesterday's flat tire, short visit with grandchildren and up and down the elevator all afternoon and evening with sick Joey, I have wrist and leg pains I don't normally have with more rest. Today needs to be a quiet day. We may just walk a few blocks to the park and listen to the piano player or visit our friends in the dog park! Maybe just mandatory bed rest. To be determined.
You are so right particularly about the unavailability of advice from both G.P.
and Rheumatologist who is difficult to contact ,in my case phone calls and e-mails are frequently unanswered, that is why this site exists.
GCA is a serious condition, talking amongst ourselves is all very well but one size does not fit all. Most professionals I have seen on this journey have never heard of it?
We need more awareness of this.I Feel the N.H.S has sold us short.
Just over ten years ago it was far worse - only one charity, in Scotland, and one support group in the east of England and one forum on patient.info. What you see here is the result of 5 women meeting on that forum and getting together to set up a charity. There was research - but far more now, some funded and initiated by the charities. I have my name on at least 3 papers about PMR.
We’ve had this conversation many times - unfortunately because it’s not a life threatening illness in the main and affects people over 50 it doesn't make the headlines, nor attract the interest (maybe) of the doctors or the researchers like cancer or the like.
If 15mg didn't work well - they would say you needed more.
Many rheumatologists who really understand PMR leave patients on the starting dose for 4 to 6 weeks - until the symptoms have improved as much as they are going to and markers, if it applies, have fallen to nearer the normal range. If they are still high - there is still inflammation to be cleared out. What's the point of measuring them if you then ignore the information they provide.
Trying to get a patient down to 10mg in 4 weeks is VERY optimistic and suggests he isn't very familiar with the vagaries of PMR. The guidelines ALL say the reduction must be done taking the patient's individual symptoms and response into account. A programmed "2 weeks of 15, 2 weeks of 12.5mg" doesn't fulfil that. I had 2 weeks of 15, 2 weeks of 10 and was fine all the way through. Two weeks of 5 was good too - but the next day, after missing the first 5mg dose I was in a worse state than before. I didn't manage to get under 10mg again for about 4 years so I am very wary of allowing that to happen to anyone.
When do you see him again Or are things now in your GP's hands?
Fantastically helpful PMR pro. I'm not seeing him til October but I'm not going to risk dropping too soon. I'll stay on this dose for another 2 weeks at least.
Hi Jontie. Is it your Rheumy or doctor you are not seeing till October? Your doctor should be monitoring you regularly when you start taking steroids once a month. That's what my doc told me. I suggest that you make a monitoring appointment with doc to coincide with the end of your first month on pred.
Hi again Jontie. I really understand your logical thinking as I initially had the same thoughts. Logic told me increase the pred to decrease the CRP.
Pre diagnosis CRP reading 80 then 29 after three weeks on pred. Great news but still not the norm. Why then was my Rheumy asking me to begin reducing pred and not increasing it to bring CRP down further?
Like DorsetLady says CRP is not necessarily just a measure of inflammation caused by PMR as other factors come into play. My doc explained, "CRP measures inflammation. It is a measure of inflammation of any sort and does not differentiate between inflammation caused by PMR or say a UTI infection."
To illustrate this point my blood results three weeks prior to diagnosis CRP was normal but PMR symptoms becoming dire! Had my Rheumy taken notice of blood results alone I would not have been diagnosed with PMR at all. However he recognised the symptoms so ignored the blood results.
Three weeks later, at point of confirming diagnosis of PMR my CRP was 80. However this was not purely measuring inflammation caused by PMR as I also had remnants of a UTI infection, two teeth abcesses and one abcess under my arm due to folliculitus, all of which were also causing inflammation, contributing to the high CRP reading. Since CRP measures inflammation but does not differentiate who can say what percentage of 80 CRP was down to PMR inflammation and what percentage was down the other infections I had that were causing inflammation.
Three weeks after diagnosis my reading was 29. Was this because my other infections had cleared or was this because pred was working on PMR inflammation? Neither my Rheumy nor I can be definitive. All we can say for sure was that my CRP had significantly decreased from my starting point at time of diagnosis, and my PMR symptoms significantly improved.
As a result of the improvement of PMR symptoms, although my readings were still above norm, my Rheumy wanted me to start reducing pred (rather than increasing it to further lower my CRP). This is because, as PMRpro concurs, pred levels are about finding the lowest effective level to manage PMR symptoms and since my PMR symptoms were improving significantly it made sense for us to begin tapering.
Conclusion - Inevitably, because we suffer from an autoimmune disease, we will be susceptible to picking up infections. These will 'skew' CRP levels, hence why PMR symptoms are the absolute key criteria for guiding pred levels, not CRP results.
Therefore my advice concurs with that of the others which is focus on the PMR symptoms, not the blood results, to guide you in your decision making. Hope this makes sense.
I've been on prednisone for 11 months on various dosages some as high as 50 and some as low as 10 and I have only had one slightly normal inflammation test. I don't base my dosage on my inflammation markers. I base it on my pain level.
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