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PMR, Prednisone, Taper, Stupidity

Posted , 6 users are following.

kathy67492
kathy67492

i was so pleased with myself for "figuring out" how to judge my pain, etc. in a taper! After 24 months I was working on the 7m slow, slow taper, using Tylenol too...and it got away from me in the night!

hooe I have caught it with a 9m dose. The baffling part is that if I had read my notes more thoroughly and had listened more attentively to the advice on this forum I would have stopped this taper before the 10 day mark!  In reviewing my notes I also noticed that LAST MARCH, 2015 I had been at 7m for 6 weeks before attempting a 6m taper (before I knew about the 1/2m taper).

hooe I caught this flare or, obviously I will be starting all over!

You are right, Eileen, the PMR is the run-away train, I am just the driver!☹️

1 like, 10 replies

10 Replies

  • erika59785
    erika59785 kathy67492

    Posted

    It is tough to taper ---- couldn't deal with going lower from 7 1/2.  7 mg brought pain......

    I will  wait 1 month to attempt the 1/2 reduction.

     

    • kathy67492
      kathy67492 erika59785

      Posted

      I am with you!...and next time I will only wait 3 days...if the pain is getting worse I will stop! Thanks...and good luck to you!
  • paul45653
    paul45653 kathy67492

    Posted

    We are into the crux of this whole sad problem involving probably a lot more people than we realize. If I could review all the posts I have read here I'm sure this would be the most popular subject. Trying to integrate the dosage with the mixture of symptoms  is the greatest of tasks. Made doubly complex by the number of similar illnesses with like symptoms most of which are pain. On top of that we have the doctors to contend with who give one the impression that without their guidance we will come to a bad ending as victims of all the worst part of pred. The Rheumies want you off pred ASAP despite the pain that ensues from insufficient cortisol in the bloodstream when the adrenals don't kick in. I am just sliding into 5mg the slow method and having problems that I can't associate with my other illnesses such as OA. I'm still looking for answers here to the amount of dosage increase to go to if I bite the bullet and go backwards to see if I get relief. Then how much to drop back to if I was wrong about a possible flare. In any case, if I don't see my way clear to increase, I'm going to stay at 5mg and see if things level out somewhat. When in the mid 80's age group there are so many other factors at work that I think one needs a supercomputer to hash it out.

    Painfull Paul

    • kathy67492
      kathy67492 paul45653

      Posted

      Well Paul, if I were in my mid 80s there is no question I would take whatever dosage did the trick. In truth, I am 69 and I feel my quality of life is just as important as my longevity and/or damage done by the medication. Over the 24 months of PMR I have been, at times, at a dose that relieves most of the issues and allows me to function...to do things, to be active sometimes, to not be fatigued all the time. Right now that is what I am going for. But I will see my rheumy soon and he will put the pressure on, at least that is what I will feel. We'll see how I do at that appointment.

      Thanks for sharing...

    • paul45653
      paul45653 kathy67492

      Posted

      Thanks for the encouragement Kathy. I put all the experiences together to make my next move.
    • Anhaga
      Anhaga paul45653

      Posted

      Paul, provided you are not experiencing a return of the debilitating pain of pmr, I suggest yuo hold tight at 5 mg longer than you might have expected, don't go up but don't taper further either.  Your adrenal glands probably need more time to adjust to their lowering pred fix - at least this is how I interpret my feelings over the past couple of weeks.  Pmr niggles are no worse, but I am much more fatigued, and because of pred side effects I'm not going to up the dose just to feel better, when probably all I need is time (at least that's what I hope!).  I emphasize that gradual increase of pain is, however, indication that inflammation is creeping up and then you really do have to up the dose.
  • Anniecurd
    Anniecurd kathy67492

    Posted

    I'm so glad that I found this site, my rheum told me to go from 5mg to 4 and reduce by 1mg every month for the next 3 months. I said shouldn't just reduce by a half. She said no, how are you going to do that, the pills don't come in less than 1mg. When I said with a pill cutter, she said it would be too hard to get an exact amount, just do t he 1mg. Needless to say, I'm reducing by a half, but every two weeks, so the result is still the same. 
  • faye______00403
    faye______00403 kathy67492

    Posted

    We actually need a college of people to help us keep track and deal

    with every PMR issue.....It gets to be a real pain....do whatever works

    for you.  If I could get down to below l0 I would take a looonnnngggggg

    time to reduce and since I'm 79 years old I may just stay at what

    is good for me....

  • bob73443
    bob73443 kathy67492

    Posted

    Hi all,

    Interesting thread.  So here's my question:

    I can't find the original document of Eileens that disusses the slow taper method, but how long are we supposed to "hold" after attaining a new level before we begin tapering again?

    Thanks all

    • Anhaga
      Anhaga bob73443

      Posted

      Referring to the specific "holding" at each level, that is to be determined by each individual.  Theoretically one could beging a new taper right after completing one, that would be one week after going completely on new dose.  In reality I believe most people stay on the new dose for a couple of weeks, and as the dose gets smaller and smaller, they stay for longer periods of time on the new dose before starting a new taper.  This is to ensure that the current new dose really is enough to control the symptoms of PMR, which apparently can start to build up again fairly slowly, especially at low doses where the reductions can be as small as .25 mg at a time.  Advice varies, up to several months at levels like 5 mg for example.  Currently I'm at 4 and because I've had a bit more fatigue at this level it seems important to wait here for longer than I might have because, pmr suymptoms aside, one also has to make sure the adrenal glands are up to the task of providing more cortisol now that pred is much reduced.

      I believe the reduction plan can be found through this site but I've found the easiest way to find it is to google healthunlocked dead slow nearly stop.

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