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

11 Replies

  • Posted

    Yes, find another doctor that has better experience with PMR. I just see so many doctors that rush the tapering. It's suggested they taper down slowly every 6 weeks you drop down. Ex: 15-12.5-10 etc. Read some of the other posts and you will see what works for most people. Be your own advocate. This forum is knowledge. Probably more than some doctors even have.
    • Posted

      thanks pam, I have been reading through, getting a new dr is not easy here, very long waiting lists. my dr was very odd yesterday ???? it's was almost like he thought he had made a mistake putting me on prednisone and now rushing to get me off. I am going to take my husband with me to the specialist to back me up as to how I am when not on prednisone 
  • Posted

    forgot to say that after taking prednisone for 2days it was like the gods had smiled on me smile I could walk up stairs, turn over in bed, walk as soon as I stood up without having to hold on to something.
    • Posted

      That is a lovely way of describing the improvement, I just say a miracle had happened. I do think that doctors do not realise the excruciating pain of PMR and are just worried about steroid doses, which they can understand. I think you have to really say to him how bad the pain is and forget any stiff upper lip. I cannot even imagine having to go back to that pain just because someone decided I should wean off steroids until I saw a consultant.
  • Posted

    Definitely sounds like the tapering is WAYYYY too fast! Most everyone on here will tell you that Drs are simply trying to get you off the pred rather than using it as a tool to manage (not treat) the underlying autoimmune condition - which IS STILL THERE!

    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).

  • Posted

    shazpetal, oh what a shame that you should find a Dr who recognises that you may have PMR, starts you on the right medication, but then hasn't got a clue about managing the reductions.  The fact that you had such a good response to your starting dose of steroids should have been accepted as proof of PMR and it being the correct treatment.  BUT you should have been advised to remain on that starting dose for at least 4 weeks, or even 6, and only then should the CRP have been repeated and used as a guide together with your symptoms as to whether a reduction should be attempted.  That reduction should not have been by more than 2.5mg, say from 20mg to 17.5mg; remaining there for another 4 weeks, repeat blood test and, if all well, a further reduction attempted.  Some people would be able to go to 15mg successfully at this point whilst others would need to go more slowly via 1mg every couple of weeks.  15mg is often the recommended starting dose for PMR and controls the inflammation in many people.  The slower the reductions from this level, the better.

    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! 

  • Posted

    Your doctor has committed the cardinal sin - he has yo-yo'd the dose, reducing your dose far too soon. You should have stayed at 20mg for at least a month before starting to reduce. The fact that the CRP and ESR have returned to normal don't mean a lot at first (or ever for some people, them being normal doesn't mean the PMR has gone away).

    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!

  • Posted

    Thankyou all so much for your replies, I will print out the info you have linked for me and see if I can get my dr to agree. 
    • Posted

      Good luck - I'm sure he should be at least sympathetic. You may have acquired this info via DrGoogle but it is all pukka medical literature.

      Keep us informed!

  • Posted

    I am dazed and confused too Shazpetal.I am in rural NZ - I feel like me and my Dr are blundering along together with this med prob - learning as we go. I too thought I had gone to heaven in the first week - felt better than I had for 18 years ( I have fibromyalgia as well)....... but he never mentioned pacing myself - I didn't realise there is a diff between anabolic steroids and these cortico things till today. I thought I was now going to be superwoman, and moved tons of soil in my garden. Not good. I am soooo pleased I found this site today. I feel like I understand my problem a little more now, and have found quite a few tips to try.

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