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Polymialga

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gary09045
gary09045

All joints hurt so the doc prescribed Prednisone. It worked miracles. 25 mg per day 1 month then 20 then 15. After about 30 days we did a blood test and ESR went from 24 to 14. We thought that was great. Then 30 days later we did another blood test it went from 14 to 38? I still feel good but a little tired most of the time. Anybody have any ideas why?

1 like, 6 replies

6 Replies

  • EileenH
    EileenH gary09045

    Posted

    I think it is possible that you didn't stay at the slightly higher dose long enough to totoally eradicate the inflammation to start with and having reduced your dose it is starting to increase again. Although the usual starting dose is 15mg it can take some time for the blood test to fall with that and a higher dose would manage that faster. The reason for the lower starting dose is that it is associated with fewer side-effects and the total dose overall is much smaller.

    These drops are also large - the basic rule is not more than 10% of the current dose at one time - the 25 to 20 drop was 20%, 20 to 15 was 25%. I don't think that steroid withdrawal pain would increase the blood tests but the dose being slightly too low to manage the disease activity at the moment would.

    It must be remembered that the pred has no effect on the CAUSE of the symptoms. PMR is just the name for the symptoms due to an underlying problem with the immune system which makes certain cells attack your own body, thinking it is invading enemies like viruses or bacteria. This causes inflammation to develop and that is what causes the pain and stiffness. The pred deals with that inflammation but can't change the autoimmune bit so that is still going on. The idea is to find the lowest dose that controls the symptoms at the moment. 

    It would be good maybe to stick at 15mg for the moment and keep checking the blood tests. If it continues to rise you definitely need a higher dose of pred but there is the possibility that the PMR symptoms are actually a sign that you have GCA (giant cell arteritis). In PMR smaller blood vessels are affected, in GCA much bigger blood vessels are involved and sometimes in other areas of the body. The lower dose of pred would deal with the smaller blood vessels which cause the muscular and joint effects but it may not be enough to control the inflammation in much larger vessels. That would allow the inflammation indicators to rise without you feeling worse physically at the moment.

    The fatigue is part of autoimmune disease and the pred doesn't make much difference to that unless you are one of the people pred makes hyperactive.

    Ask your doctor to keep checking bloods - and if they continue to rise or any other symptoms of GCA appear, such as jaw pain, headache, scalp pain, and above all any visual symptoms such as blurriness, double vision, patchy vision, dark spots, you need to be referred to a rheumatologist as an emergency - not urgently. The doctor needs to send you to A&E with a letter. If it is the evening or weekend - don't wait to see the GP, go to A&E. I don't want to scare you but GCA can cause blindness if left untreated. You would need higher doses of pred to deal with that.

    I know this sounds complicated - if you have any other questions do ask and I'll try to answer them individually.

    • gary09045
      gary09045 EileenH

      Posted

      Wow Thank you for the reply it sounds like you are a doctor. I live in Canada so it takes a while to see specialists. I am having another blood test August 4th and seeing the GP Doctor  August 8th. He is very puzzled why the level of inflamation went up so high. He is making me a appointment with a specialist ,but that might be a while. In the meantime, my joints do feel a lot better. Thanks so much for the help   Gary
    • EileenH
      EileenH gary09045

      Posted

      No not an MD - I have worked all my life in the biomedical field and have had PMR for 10 years so have done ALL the research. I'm also involvved in both the UK support groups and a research group as a patient rep.

      But as I've explained (I hope), one reason your bloods have gone up could be that the PMR is just a forerunner symptom of GCA which often happens. Just mention it to him as a possibility.

      If you follow the link mrs k has given there is a paper on there aimed at GPs, written by one of the top guys in the UK, to help them diagnose and manage patients with PMR and GCA. I'm sure your doc will be pleased to have some bedtime reading about the more complex side of it. It isn't just "Doc Google" - it has a good pedigree!

      We have a couple of other Canucks on the forumup forum - one in Northwestern Territory and one on the eastern seaboard if I remember rightly. Both ladies - but it means we realise the problems you guys face seeing specialists!  

    • gary09045
      gary09045 EileenH

      Posted

      I dont seem to have any of the symptoms for GCA.  But the level of inflamation seems to indicate that something is going on somewhere and we need to find that problem soon. I am hoping the next blood test is lower and maybe the prednisone can be lowered again? Having a little trouble sleeping but that is suppose to be a side effect. A little swelling in the face and being lazy a lot, I am hoping all will change when it is lowered. Thanks again Gary
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