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ESR & C-reactive protien blood tests have come back well within normal range

Posted , 10 users are following.

denise76179
denise76179

I have had PMR for 3 months been on pred 15mg down to 12.5mg and just recently have dropped to 11mg - I went for the blood tests yesterday and they came back well within normal range so the Dr said the PMR has gone and I can now start slowly reducing the pred.  I know you have said to stay on the 10mg for a year - would this still apply OR do I reduce as low as I can and see how the pain reacts and go back up a bit if it returns as the Dr suggests.  Hearing that the blood levels can be deceptive has made me a bit anxious and unsure.  You probably know what its like I want to reduce as low as possible but I want to do the best for the long term outcome also.. 

2 likes, 16 replies

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  • Dinah54
    Dinah54 denise76179

    Posted

    My CRP levels have gone right down several times but then when I have reduced by just 1 mg have shot back up again because the dosage was not enough to control the inflammation. How extraordinary that your doctor should tell you your PMR has "gone" after only 3 months! Obviously it would be great for you if it has but it seems extremely unlikely
  • Mrs.Mac-Canada
    Mrs.Mac-Canada denise76179

    Posted

    Yikes, I can't believe your Dr. told ou that the PMR  has gone because your levels are within normal range.  Also not sure where you heard you should stay at 10mg for one year.  

    The wise women of this PMR/GRC forum will undoubtedly reply to your discussions with links to, what has been found by most of us, the most gentle and successful way to decrease although it takes a bit longer than you would like.  Primary rule is no more than 10% decrease at t time (which you seem to have been doing) but this obviously changes as you reach the lower doses. 

    As said in other discussions, we are after the lowest dose to manage our symptoms and once stable at that dose we can begin the very slow process of decreasing further.  I found out the hard way that "0" may be the goal but how you get there is the most important part if you want to be successful.

    One of the best things about this forum is that there are so many people telling their stories and everyones experiences with PMR are different. We learn so much by sharing what works and what doesn't.

    Be kind to your body and listen to it.  It is the best guide I have found (with guidance from Eileen and Mrs.O)

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      "not sure where you heard you should stay at 10mg for one year"

      A paper was published at an Edinburgh meeting a couple of years ago whichis aimed at GPs to help them diagnose and manage PMR and GCA more effectively. It is the final link in the post in this link. They start patients at 15mg for 6 weeks, 12.5mg for 6 weeks and then keep the patients at 10mg for a year before reducing further. They find this reduces the flare rate to 1 in 5 patients compared to 3 in 5 patients on the more usual reduction schemes. This is based on their clinical experiences over many years.  

      I suspect that using the very slow reduction scheme we suggest might avoid any flares - but we can only offer anecdotal evidence on it in that it has worked well to allow many patients to get to much lower doses - the definition of flare is different perhaps and you also have to bear in mind that it is very likely you will find a dose at which symptoms start to reappear. This is the lowest effective dose you are looking for - but many doctors are fixated on "PMR burns out in 2 years" and think they can reduce to zero with no problem. It doesn't more often and not and you can't. 

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

  • carolk
    carolk denise76179

    Posted

    the reason your bloods are reasonable is because the steroids are controlling the inflamation there is no way the pmr has gone your gp needs to read up on pmr .carolk

  • EileenH
    EileenH denise76179

    Posted

    The blood tests are in normal range because of the pred - it doesn't mean the underlying cause of the PMR has "gone", it means the pred dose is enough to control the inflammation which is not the same thing. However, you have already starting reducing successfully.

    I would say you have a choice: you could take the paper from the Bristol group with their recommendations to your GP and discuss it with him - the paper is aimed at GPs to help them manage PMR more successfully. They suggest a year at 10mg and say why. Or you could use the slow reduction scheme posted repeatedly on here until you find the dose your pain returns - which could be much lower.

    Either way, follow this link to find a post with the link to the Bristol group paper (final link in the first post) and the "dead slow and nearly stop" approach to reduction (the fourth reply I think).

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    • denise76179
      denise76179 EileenH

      Posted

      Thanks Eileen - having read that paper I am resting easier re pred causing heart problems and by taking the calcium/Vit D/Mg combination osteoarthritis should not necessarily happen.  I'll research the best calcium to take and when and stay on the 10mg for a while as I can still feel the underlying pain in one of my shoulders and a vawils says I'm still lacking my full quota of usual energy.  When the pain in my shoulder goes I'll then reduce slowly slowly to the lowest possible dose of pred.  This is an invaluable site for those of us who are PMR/GCA sufferers so thanks to everyone and I'll keep you updated as time goes on.
    • EileenH
      EileenH denise76179

      Posted

      Uncontrolled PMR inflammation can also cause damage to the arteries - and the underlying autoimmune disorder can also cause heart problems. I have atrial fibrillation and the cardiologist is confident that is what caused it.

      The energy may not come back because of the pred though so don't be disappointed if it takes a long time. The fatigue is due to the autoimmune bit itself and that doesn't respond to the pred.

    • Madeleine_G
      Madeleine_G EileenH

      Posted

      I was interested to read that you too have atrial fibrillation.   I also have this problem and have been convinced that the PMR set it off.   I had a cardioversion a few months ago and my heart went back into sinus rythym but the PMR was quite bad at the time and after a couple of weeks the atrial fibrillation returned.   Once and if i get rid of the PMR I shall  ask for another cardioversion in the hope that it will then work permanently, but feel at the moment it is pointless.   Fortunately the PMR is getting better and I am now down to 4 1/2 mg a day of pred. and seem stable on that.
    • EileenH
      EileenH Madeleine_G

      Posted

      They don't do cardioversion here (northern Italy) except as a last resort - they say it works permanantly so rarely it isn't worth it and it does have risks. I am on medication and it seems to have done the trick. 

      I know several PMR/GCA patients with a/f and have asked rheumys if the rate of a/f is higher in PMR patients and got a woolly reply "but it is higher in the age group anyway". Yes - but is it higher in a population of PMR patients than in a population who don't have it? It is more common in RA patients and I am sure that some symptoms patients complain of and are blamed on pred are actually mild a/f. 

  • vawils
    vawils denise76179

    Posted

    I got a similar incorrect response from my rhematologist recently who said that i couldn't be having any symptoms from PMR since my blood tests were in the normal range. This is not true based on my experience,  I am still having fatigue, muscle cramping and low energy and was wondering if it was due to the pmr or the medications.  I too am concerned with the reduction scheme the doctor has also started me on.  I think we all have to inform ourselves with the best  information available and work to inform the doctors because ultimately we are the one's living with this disorder and need to do what is best for each of us.

  • Madeleine_G
    Madeleine_G denise76179

    Posted

    I have had PMR for about 11 months.  Started on pred. at 10mg.   Have reduced slowly over the months since my blood back to normal.   I reduced 1 mg a month and am now down to 41/2 mg a day.  I will do this for a month and now as quite low only drop 1/2 a mg a day therefore down to 4 mg next month.   I am trying to drop  1/2 mg a month.    If the pain returns I bump it up 1/2 mg for a few days and then cut back again .      I cut the 1 mg pill in half.  This seems to be working.   I also go once a week into a barometric chamber and breathe pure oxygen for an hour.   It is used mainly people with MS but  I feel this has helped me a lot. 

    Hope this helps.  

    Madeleine G

    • denise76179
      denise76179 Madeleine_G

      Posted

      I like that idea of increasing oxygen as I read somewhere if we breathe properly we will be much healthier.  I have only a 96 oxygen level compared to my (now recovered from GCA) Mum who registers 98% so it could help me also
    • denise76179
      denise76179 Madeleine_G

      Posted

      Meant to say I don't know if I can get access to a barometric chamber because of where i live but i'll have a look around and ask my GP
    • EileenH
      EileenH Madeleine_G

      Posted

      How very interesting Madeline. i was at an international meeting a couple of months ago and a speaker from the USA was talking about using hyperbaric oxygen as an anti-inflammatory agent. We did briefly talk about the idea of using it as a steroid-sparer so having read this I shall pursue it with some of the research bods.
  • shirleyann43258
    shirleyann43258 denise76179

    Posted

    Thank you Denice. I still have not seen a Rhuematologist. .... I am completely confused at 64plus yrs.  Never have I been this sick.I have Chrons and Ibd. Hiatal hernia ect. But this much prednisone from 60MG 20-nb
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