confused.... can someone help
Posted , 9 users are following.
I am from New Zealand.. our crp levels here are 1-8 normal
I have been unwell and very sore for 3 years, my shoulder got so sore that I couldn't lift it to do much of anything and very sore hips/back. I knew nothing of crp or esr but bloods were done.
2013 crp-29 esr-40
2014 crp-20
2015 crp-16 new doctor who wanted to know what treatment I was one, I said none as I was never told anything was wrong. He put me on 20mg of prednisone for 5 days and redone bloods. crp came back at 8 (normal), so he told me that's a positive for PMR and started me on prednisone 20mg for 7 days then told me to drop to 15mg, blood test after 1wk 15mg came back at crp12 so he put me back up to 20mg for 1wk, another blood test , crp 8.6 back down to 18mg this time for 1wk crp 9. so now he said he thinks I have atypical PMR ??? and wants to wean me off prednisone and send me to a specialist which will take about 3-4mths to get an appt
he has said to take
18mg for 1 wk
15mg for 1wk
10mg for 1wk
7mg for 1 wk then have blood test. today I am starting to get all my pain back and am sooo confused, can anybody shed any light
thanks
1 like, 11 replies
pam7653 shazpetal
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shazpetal pam7653
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shazpetal
Posted
ptolemy shazpetal
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FlipDover_Aust shazpetal
Posted
In my experience I was fine with 2.5mg drops until I got to 15mg - and after a couple of failed attempts I'm now tapering at 1mg and at some point soon I'll go to 0.5mg drops using what everyone on here calls "Eileen's dead slow nearly stop" regime (which is availabe from one of the pinned posts).
IF I can.... Let your body tell you how you are doing. Accept that you are going to be on the pred for a while and only you will know where your acceptable level or dose is going to be.
The CRP is only an indication of inflammation levels, that may or may not be related to your PMR - e.g. it may be elevated for other reasons one week when you have a blood test so the readings don't tell the whole story. For example, my CRP levels (I'm in Australia so they measure the same as yours) are up and down like a yo-yo - never been below 9 (and that was only for less than a week). I suspect I have something else going on other than 'just' PMR. (my level is usually around 16-20 despite 'higher' doses of pred).
MrsO-UK_Surrey shazpetal
Posted
If you are unable to transfer to another Dr who has more knowledge of treating PMR, you need to look up the BSR guidelines for the management of PMR and take a copy to your Dr. Certainly don't let your DR "wean" you off Pred when it is obviously doing it's job.......at the right dose!
EileenH shazpetal
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Take the paper called the Bristol paper in this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
to your GP and ask him to please read it and consider trying their programme for you if it really is so difficult to find another GP. I'm left to ask what he thinks is atypical! Your symptoms and even bloods are typical as was your immediate response to 20mg pred. The pain that came back at 15mg may have been withdrawal - some people are very sensitive to changes in the pred dose - I get pain with 1mg changes, never mind 5mg, though you might get away with 2.5mg drops. When the dose is put up and down like that some people become more resistant to the pred and a period at a stable dose is important.
Since the pred made such a difference I think it is rather unfair of him to suggest you spend another 3-4 months in pain waiting for a specialist appointment. Give him another chance with the Quick and Kirwan paper (Bristol paper) - it was written by rheumatology specialists, at the time from Bristol UK, to assist GPs in the diagnosis and management of PMR without necessarily resorting to a specialist so he shouldn't be huffy about it. He may have seen somewhere that the response to pred is no longer regarded by some doctors as "confirmatory" - but it is an important piece in the jigsaw along with typical symptoms.
He may also be interested in the review paper, A clinical reveiw of polymyalgia rheumatica by Mackie and Mallen, which you will find via the first link under Research and Guidelines in the post that link above takes you too. Sorry it is a bit complicated - but these are pre-approved links that won't be nabbed for moderation!
shazpetal
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EileenH shazpetal
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Keep us informed!
Flutterbie57 shazpetal
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EileenH Flutterbie57
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https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316