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PMR/GCA and tapering

Posted , 10 users are following.

sharon35553
sharon35553

I was suffering with severe scalp pain, for many months on & off. Then one day awoke to total stiffness, couldnt move.. groin pain arms etc. Started on 10 mil of prednisone it was like a miracle, pain gone. After two months Dr. insisted on tapering me to 5 mil. Nightmare, pain back within one day & after four days of suffering he ran blood tests and all normal. I had to force him to put me back to the 10 mil and of course pain gone but not to the 100& pain free before the taper. Does anyone here know why the pred didnt work quite as much when put back up?

Also my Rheumy is insisting that since my blood tests were all normal it could not possibly be PMR but that is untrue, when I tell him this he gets upset with me. One in five will have normal results & still have PMR.

He wants MRI"s to see if it's degenerative arthritis but why, even if it is what would the tests prove. If Im better on the pred I would still need it no matter what the MRI showed. He claims it's to rule out other things but the other things are all related to rheumotoid arthritis in one way or the other. I'm so unhappy with conflicting Dr's and their opinions and how they just disregard my symptoms and want to look for more problems. Why not treat what they see and trust that we know our pains, we know our bodies.

0 likes, 15 replies

15 Replies

  • Anhaga
    Anhaga sharon35553

    Posted

    I cannot understand why doctors think if you don't have inflammatory blood markers after being on prednisone for a while that you can't possibly have PMR.  Isn't the pred supposed to dampen the inflammation so of course it won't show up on blood tests?  Others will have more info about why the pred didn't work so well the second time, but that is, unfortunately, the way it seems to be.  I don't think it is just psychological as we tend to feel so fantastic after initial treatment we remember it as being even better than it was.  I really do think the body has already developed a slight resistance to the pred. The main problem you had was being forced to halve your dose all in one go.  It would have been more sensible for the doctor to advise you to try a drop of one mg, and even at that the "dead slow nearly stop" method where you gradually introduce the lower dose would have been much easier on your body.  I use this method and have been slowly reducing by about 1 mg every month to six weeks.  Under the best of circumstances it is likely to take at least two years to wean completely off pred.
    • sharon35553
      sharon35553 Anhaga

      Posted

      Hello Anhaga,

      Thanks for your reply. You are right in all you stated, its so confusing to me let alone have a Dr who is adamant about not thinking it's PMR/GCA when I have all of the classic symptoms.  I'm on the look out for another Rehumy but need to keep him for a while until I find one.

  • Oregonjohn-UK
    Oregonjohn-UK sharon35553

    Posted

    Hi Sharon - you are quite correct in saying that 'normal' marker don't rule out PMR.  Your GP started you on preds at 10 and you saw relielf very quickly this should have indicated to him/she that this was a good indication.  10 was a little on the low side - 15 mg is the recommended starting dose see the Bristol paper here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 if you print out and hand to your GP (and get them to read it!) they would understand.surprised
    • sharon35553
      sharon35553 Oregonjohn-UK

      Posted

      Hello Oregonjohn and thank you for your reply,

      I am printing this off thanks so much for providing it and I cant wait to show it to my Dr. I bet he wont even read it, he already told me to stay of the internet and not to join support groups, can you believe this. I will be looking for another Dr even if I have to drive a few hrs more.

    • faye______00403
      faye______00403 Oregonjohn-UK

      Posted

      I printed the Bristol papers and gave to my GP yesterday.  He

      was perfectly agreeable to reading them.  I was hesitant because

      you never know.  I had told him some time ago that I found this

      site and learned a lot from you guys....way more than I ever found

      online about PMR.  He's been my Primary for l7 years so really

      have a good relationship with him...

  • linda17563
    linda17563 sharon35553

    Posted

    Welcome to many of our worlds on the website....when you find a rhemy/doctor that agrees with a patient as well...let us know...it`s a battle we could all do with out, and really dosen`t help us at all does it....why can`t they all work together, but that would be too easy.  Hope you get there in the end.....I`m still battling after 4 years...now waiting for another rheumy appointment which I`m dreading....she tells me...not listen to me....after this one, I will attempt to change to a different one, but could do with out the stress!...Good luck....
    • sharon35553
      sharon35553 linda17563

      Posted

      Hi Linda,

      Thanks for your reply, it helps know others here understand what we are living with. Yes I agree, they need to listen to their patients without being so definite and making us feel as though we are the ones who don't know what we are talking about. Good luck to you too...

  • Marla0415
    Marla0415 sharon35553

    Posted

    Hi Sharon  It seems some (maybe most) Dr's just don't understand PMR at all so the patient suffers!  I know it's common after reducing that the same dose that alleviated or much reduced the pain before does not do so again. That was my experience and that of many others here on the forum.  I had a couple MRI's , multiple X-rays, bone density tests and a huge range of blood tests mostly before being put on Pred but some after. My GP suspected PMR but wanted me to see a Rheumatologist. In the meantime no treatment at least no Prednisone. Hard times for me!!

    The fact your Dr gets angry when you tell him that the inflammation markers don't need to be raised for it to be PMR is not a good sign at all. I dislike it so when a Dr disregards what a patient has to say just because " they are the Doctor"!  Maybe you will have to find another Dr !  You may have to put up with some of the testing though. Most doctors are going to do that to find if they are treating something else along with the PMR.  In the meantime I hope he will let you stay on a dose of Pred that helps and then reduces you slowly.  Wish you the best. 

    • sharon35553
      sharon35553 Marla0415

      Posted

      Thank you Marla,

      I appreciate knowing everyone here understands it all. I'm on way to my Internist, cancelling the MRI for now, I've had several xrays & the Ortho Dr said he saw arthritis on the neck, hips & shoulders so if he didn't recommend an MRI not sure why I need it just a few weeks later. Im sure an MRI will show more arthritis and then I'll be back to square one, no diagnosis. If my hip were fractured I'd be in constant agony, wouldnt be able to walk or do the things I can now so I will wait until I really think I need all of these other tests and stay on the pred as long as possible.

    • linda17563
      linda17563 sharon35553

      Posted

      I was told by an osteopath years ago....all people over 30 will show arthritis on xrays etc, but it scares them when told.....but it`s wear and tear with age!.......
  • margaret22251
    margaret22251 sharon35553

    Posted

    my rhymi says this as well but i am not convinced.

    Tapered from ten to 6.5, still getting temporal pain, earaches etc, but not jaw pain, had jaw ache but very little, 

  • faye______00403
    faye______00403 sharon35553

    Posted

    Welcome to the trip down the PMR road where you have to deal

    with doctors that are really not knowledgable about your disease.

    Well, some are I guess, mine does okay without a lot of grief.

    If possible I guess you need to find another Rheumy.   There is

    a sufferer for every symptom as I've learned on this site.  Something new

    I haven't heard of everyday  Elaine can probably explain to you

    why the pain didn't go away the same the second time around as

    the initial dosing of pred.....everyday is "trick or treat"

  • FlipDover_Aust
    FlipDover_Aust sharon35553

    Posted

    of course it can be PMR! if you have the symptoms and the pred works, it's pretty clear it is PMR.

    That said, you should probably humour your rheumy and do the tests to rule out other things, it's possible to have more than one thing going on at a time....

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