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Flare

Posted , 12 users are following.

jeniferaz
jeniferaz

So I was diagnosed with PMR on Aug 19/16. Started on 20mg pred and have tapered down to 2.5 mg when flare started last week. Now up to 5 mg the last 3 days and still experiencing hip pain during the day and keeping me awake at night. It hurts! I am reluctant to go back to 10 mg but my body is not happy. So far it hasn't crept back into my shoulders, hands but what should I do??

0 likes, 34 replies

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  • robby6859
    robby6859 jeniferaz

    Posted

    Wow!  I think maybe you have reduced way to fast.   
    • jeniferaz
      jeniferaz robby6859

      Posted

      Yeah. Kind of figured that out too late😒. I just don't like the possible side effects of Prednisone, so did too much too fast?

    • Nancy_O
      Nancy_O jeniferaz

      Posted

      I started in May/16 at 20mg and am just down to 9mg. Take your time. It's not a race. I hate the side effects too, but the flare-up's are worse. I'll reduce 1mg every six weeks and when I get below 5mg, I will reduce by

      .5 at a time. It's a balancing act for sure. My father had PMR and always needed a low dose for 40 years. Worked for him to enable him to have quality of life. Do whatever your body tells you it needs. Good luck

  • ricky23486
    ricky23486 jeniferaz

    Posted

    Sounds like the pmr is still there ....it takes its own time to burn itself out.The tapering itself was very very fast.. but you got to a dose which allowed the pmr to show you that it is still there! So it is telling you to go back up with your physicians help to a dose that keeps you pain free again. I went from zero back up to 10 mg. After having tapered from 15 mg over a two year period. Two weeks on no Prednisone and all the pain re- emerged. The group encouraged me to realise that it is more important to be functioning and pain free than hobbling around, not functioning and steroid free. Not to mention the possible damage being done internally by the unchecked inflammation.
    • jeniferaz
      jeniferaz ricky23486

      Posted

      Thanks Ricky

      I can't get in to see a Rheumatologist until late Nov so have been relying on my GP for guidance. Unfortunately she isn't too familiar with PMR and the principle of SLOW tapering.

      Hopefully the Rheumatologist will give me a better program for pain management!

    • ricky23486
      ricky23486 jeniferaz

      Posted

      If you have a look at the plan for dead slow tapering that Eileen put up on the site you will be at least, if not more, clued in on how to taper safely than some health professionals who push us to taper fast .
  • anapp
    anapp jeniferaz

    Posted

    Like Ricky, I too was off Prednione (for GCA) for two months, but was having enough muscle pain and weakness once off to keep me from activities, including keeping up the house.  My  Drs. have just told me to try 1 or 2 mgs. to see if it helps.  Having colonoscopy tomorrow so will start after.  That said, when I was on Prednisone for either PMR or GCA, whenever I got down to a dose where I was having symptoms again, I simply went back to the last dose at which I felt good so only ever went back up 1 or 2 mgs.  Maybe you could try that. And yes, you did reduce way too fast so maybe you will have to go back up more and then come down s l o w l y.  Took me 1 1/2 years to get off Pred for PMR and about 3 years for GCA.
    • jeniferaz
      jeniferaz anapp

      Posted

      Good luck with your colonoscopy tomorrow!

      Guess I thought I could just be done with this illness quickly-silly me😉

      Thanks so much for your input!

    • anapp
      anapp jeniferaz

      Posted

      Thank you and don't feel silly.  I don't know about the others, but I didn't know what I was in for when I started either.  You learn a lot in 5 years of Prednisone and even more from the experience and knowledge of others like those in this forum.  Good luck.

  • EileenH
    EileenH jeniferaz

    Posted

    It's already been said: far too fast. 

    PMR is a chronic disease - you are looking at anything between about 2 and 6 years on some dose of pred. First you get the existing inflammation under control and then you reduce SLOWLY to find the lowest dose that manages the symptoms as well as that starting dose. Yes, I understand you don't want to be on pred, none of us do, but the reality is that you have a choice: you take enough pred to manage the symptoms (and that is all it is doing) until the actual cause burns out or you don't - and cope with the pain, which will also last for probably anything between 2 and 6 years. It might be less, but it might also be more. I've had PMR for over 12 years with no let up. There is no way to be done with PMR quickly - it is an autoimune disorder which came when it wanted to and it will go when it wants to. There is nothing known that you can do that will speed it up, just manage it well to allow a relatively normal quality of life with minimum pain and disability.

    Never mind the "Dead slow approach" for now - we'll keep that for later but you could start by taking the "Bristol paper" to your GP, it was written by top PMR experts to help GPs manage PMR without recourse to a rheumatologist, and you will find the link in this post:

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

    They start at 15mg and keep you there for 6 weeks, Then at 12.5mg for 6 weeks.  Then a year at 10mg. If you were diagnosed on 19 Aug you would just have got to the end of the 12.5mg level - not be at 2.5mg. That sort of reduction was setting you up for failure from the start. You have reduced so fast that you cannot know at what point you got to a dose that still managed the inflammation - so I doubt whether just going back up a couple of mg will do. It could be 5mg you need - or it could still be 12.5mg. You could try 10mg, but it may not work or it may take a long time to work.

    I don't get it, I really don't. If you don't know how to deal with a patient who has a disease unfamiliar to you other than what the symptoms are, then what on earth is the matter with using the interneet to find the international recommendations issued by the experts? The 2015 international recommendations for management of PMR are available, free to air, and with a suggested approach:

    A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.

    B. Relapse therapy: Increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4–8 weeks) to the dose at which the relapse occurred.

    C. Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg on alternate days, etc.) until discontinuation as long as remission is maintained.

    Even at their rate you would still be at 10mg - provided you had had no problems. Our personal experience on the forums is even that is too fast and very optimistic. But it is far preferable to what you have been subject to.

    • mimi1950
      mimi1950 EileenH

      Posted

      Thank you again, your help is invaluable. I have no stress anymore regarding PMR, stress that is very bad for it.

    • jeniferaz
      jeniferaz EileenH

      Posted

      You are awesome EIleeen! Thank you so much for sharing your most valuable knowledge on PMR. I will definitely print out the Bristol Paper and present a copy to my GP. In fact, I have copied out your whole dissertation so that I can keep on my desk for future referral. I am trying the 5 mg dose for a dew days to see if it will calm down. If not, will try 8, etc., until the inflammation is under control. You are truly a valuable asset to our PMR community! 

  • mimi1950
    mimi1950 jeniferaz

    Posted

    I really relate to what has happened to you. I, too have been recently diagnosed with PMR and mistreated by a Rheumatologist who, as Eileen stated, prescribed an irrational course of steroids not in any textbook. I am appalled that doctors all over so readily prescribe PMR patients with corsés of Prednisone in a way that is harmful.It is no excuse that they are not experienced in PMR-anyone can look up the established protocol on how the prednisone should be dosed.

    I only trust this forum now. If it weren't for the information I've acquired on here, I would still be yo-yoing on the prednisone,,a practice that compromises the course of PMR.

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