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What is acceptable

Posted , 11 users are following.

daisylazy
daisylazy

I am back again, just needing a bit of clarity about what is normal and acceptable .After  giving up the diclac and before increasing the pred i took a suggestion Eileen made and put it into practice eg taking the pred anytime during the night when i woke up .I find this is working fairly well .I wake up with pain and stiffness in my shoulders but this wears off when i get moving .I can walk a mile shortly after breakfast so my question is should i stick at the 5 mg even though my ESR and CRP is still up . Thanks for all the great advice on this forum .

0 likes, 16 replies

16 Replies

  • ptolemy
    ptolemy daisylazy

    Posted

    If you feel OK to reduce a bit there is no reason not too try if you feel you are stable. My ESR has always been pretty high and has never been in the normal range, my doctor thinks some of us are different to others! I find if I have a cold both ESR and CRP shoot up, but I am still OK to reduce once over the initial cold symptoms.  
  • maureen63465
    maureen63465 daisylazy

    Posted

    I daisylazy,

    I really haven't a clue what is supposed to be normal or abnormal. For instance I have experienced a very painful left foot and left hand today yet am on Prednisalone. Also each evening over this last week I have become very overheated from about teatime onward and also woken up sweating in bed. Could this be a reaction to Medication ? I think I am going to make an appointment with my GP to see if she has any

    answers. It seems a very complex condition and no two people seem the same.

    I also wake up with pain and stiffness in my shoulders but after a hot drink and a couple of Paracetamol it begins to ease off. 

    Sorry I can't be more helpful. but it is so helpful to discuss ones problems. Thank you to all 

  • Anhaga
    Anhaga daisylazy

    Posted

    My doctor wouldn't even tell me my test results last time I saw her - she said the symptoms are what matter!  I suppose she just orders the tests occasionally to make sure there is nothing seriously awry.  The rest is up to me and how I feel.  wink
    • Oregonjohn-UK
      Oregonjohn-UK Anhaga

      Posted

      You have a right to know, I always ask my GP for the results and he usually prints them out for me.  Might be worth asking the direct question 'Can I please have a copy of my results'
    • Anhaga
      Anhaga Oregonjohn-UK

      Posted

      I agree and I was annoyed, so next time I will ask for results first so that my time does not run out before she looks at them!
    • Mrs_CJ
      Mrs_CJ Anhaga

      Posted

      When I arrive at my doctors office I ask the receptionist to print off my test results and she always does. Then I have a chance to look them over while I'm waiting to see the doctor. Occasionally I will drop into the office to get my results, when I want to know but need to see my dr. 

      I love how we can access our routine lab tests here in BC Canada. You can set up an account and have access to most of those tests. Often I will go to the lab early in the morning and be able to see most of my results on line later the same day. 

    • Anhaga
      Anhaga Mrs_CJ

      Posted

      They keep talking about that in Nova Scotia, but so far nothing.  
    • Juno-Irl-Dub
      Juno-Irl-Dub Mrs_CJ

      Posted

      Lord I couldn't imagin myself doing this! I couldn't have such an 'academic' interest in my own body!!   I get my doc.to send all test results to the Rheummy and then SHE can imform me. If I got them myself, I would have myself diagnosed with various ailments - all fatal - and wouldn't sleep until the appointment came up. . .  What a wuss I know, but I've come to the conclusion that I'm paying her to worry about me. (Deluded also!).  J 
    • Juno-Irl-Dub
      Juno-Irl-Dub Mrs_CJ

      Posted

      Lord I couldn't imagin myself doing this! I couldn't have such an 'academic' interest in my own body!!   I get my doc.to send all test results to the Rheummy and then SHE can imform me. If I got them myself, I would have myself diagnosed with various ailments - all fatal - and wouldn't sleep until the appointment came up. . .  What a wuss I know, but I've come to the conclusion that I'm paying her to worry about me. (Deluded also!).  J 
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      The doc at the hospital decided to do some rheumatology tests Friday last week together with a BNP, a blood test that is an indicator for heart failure, to see if that was the cause of my awful breathlessness. I was to see him on the Monday - you don't think I was going to wait until Monday to find out the result of a test like that do you, when it would be done by the afternoon? 

      It was normal. I can cope with anything (I think) as long as I know. It's the not knowing that was the problem. So I saw him on Monday, was told "it isn't your heart..." and we spent the next 3/4 hour talking about PMR (his hobby) and he printed out 3 very recent review articles and the new Guidelines for me. He also said how nice it was to discuss a medical problem properly with a patient. It was the most pleasant doctor's appt I have ever had - and I told him so. And apparently, one of the top people in PMR medicine lives just down the road and he's hoping to persuade him to move to this region, at present he works in Austria.

    • Anhaga
      Anhaga EileenH

      Posted

      Does he have any ideas about the breathlessness?  Are you feeling better?  🌈
    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Ah well now,  you're NOT the typical patient!  And it sounds like that doc.-patient relationship is going somewhere . . .  M mmm  

      PS. delighted to know that CHF is not a cause of your symptoms.   J

    • EileenH
      EileenH Anhaga

      Posted

      I probably had a viral/bacterial infection that prodded the PMR into life and affected the arteries in the chest - which to some extent was how my PMR started and what suggests there might be an element of GCA in it. At 15mg I felt much better and have reduced - at 11mg I still felt much the same, tried 10mg last night and don't feel quite so sprightly. So I shall go back to 11mg and see how that goes.

      What was really strange was I felt ropey all morning, after luch I steadily felt better and better.

      Yes, Juno - I think that was what he was really concerned about. It isn't so it's a be patient story. Now where have I heard that before...

    • ptolemy
      ptolemy EileenH

      Posted

      I am so sorry to hear you are not so good. It is quite a shock when you thought things were going well. I think other things do make the PMR seem worse sometimes. I know the sciatica I have had recently made my shoulders more painful in sympathy. I hope you will continue to feel better and better.
  • EileenH
    EileenH daisylazy

    Posted

    Both ESR and CRP can rise for other things so get the ESR and CRP checked again in a few weeks to see if it is creeping up - which would suggest the 5mg isn't quite enough to clear out the new lot of inflammation each morning, it will mount up slowly and at some point it will be enough to cause symptoms. As long as you have no symptoms the ESR is only a one part of the overall picture and a couple of raised values shouldn't result in a knee-jerk reaction to increase the dose. If it stays stable it could even be that that is your personal normal.

    But don't ignore niggles - leave it too long and you might allow a proper flare to develop which would need more pred. At present you might only need 5.5mg to work 100% - leave it and you might have to go up to 8mg or even more to get it under control. 

    • daisylazy
      daisylazy EileenH

      Posted

      Thanks Eileen.So sorry to hear you are under the weather .Please God you will soon be fighting fit again .

       

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