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Forced pace of taper

Posted , 20 users are following.

amkoffee
amkoffee

I have a very good rheumatologist. I won't go on about all the way she's good but she is very pleasant and is a very intelligent doctor with a very good memory. But I saw her yesterday for my 3-month visit and she is wanting me to start tapering faster than I am. She is concerned (and rightly so) that my broken ankle broke in 3 places because of my consumption of prednisone. I understand why she wants me to reduce but I'm at 12 mg and I am starting to go down to 11.5 mg using the dead slow method. But the way I have it setup is on reducing by only .5 mg rather than a 1 mg. So she wants me to drop to 11 mg right away and continue to drop by 1 mg as fast as possible. My concern is that 11 mg has been my magic number all along. Every time I try to taper down I to anything below 11 and I start having pain. That's just so very frustrating for me and this couldn't come at a worse time. But I've changed my schedule and today I started at 11 mg and I will do that all week and next week. Then I'm not sure what the schedule is from there. I am using a taper schedule from the website that I found out about here on Patient.

1 like, 34 replies

34 Replies

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  • Elijo
    Elijo amkoffee

    Posted

    I've had PMR since Nov. 2015.  Gradually had reduced to 3mg. but began having symptoms and returned to a higher dose.  Thken very slowly reduced again, like 1/2 mg. ev. 2 weeks, when I got down to 3 it started again.  Finally decided to stayi on 5mg. and no reductions for quite a while, I felt OK. Recently started reducing 1mg. a week, now down to 3mg. with no symptoms, and hoping to get off of it.  I don't even know if I still have PMR because my lab work had not been high.  A few months ago when I was having the pains, my doctor said I didnt have it anmore because my lab work didn't show it, and claimed it was arthritis.  I retorted that the PMR pain was different, and maybe he wouldn't understand because he never had PMR.  It's a known fact that the lab work can be normal and still have PMR.  So the point of my response is that I just stuck on the 5mg. for a while and didn't worry any more about tapering, but thought this was a good time to try again.  Good  luck to you!

    • amkoffee
      amkoffee Elijo

      Posted

      You might also point out to him next time you see him that your levels may be normal now because you're on the prednisone.

    • EileenH
      EileenH Elijo

      Posted

      In fact - point out to him that if the levels weren't low on pred you would be on too low a dose to manage the inflammation! 

      And at 5mg you NEED to go slow to get adrenal function back...

    • Elijo
      Elijo EileenH

      Posted

      Thanks for your and AmKoffe's replies.  The funny thing is that in the early stages of my PMR, my lab work was never very high and the Doc said that the lab work doesn't always show it!  Ha! Then he comes off with his retorts which conflict with his original  statement that he said to me!!!  I guess I will not lower it 1mg. per week from now on,  according to what you said re: adrenal function, and just do the "finale" a little slower.

    • Anhaga
      Anhaga Elijo

      Posted

      Be very careful.  Last year I was as low as 1.5 mg and feeling well, thinking maybe I was approaching true remission.  My markers have never been as low as they should be,  I don't know why and my doctor doesn't care, they are still in what she considers normal range.  However, when I attempted to reduce to 1 mg I triggered a flare and am only now, many months later, approaching 2.5, where I once again feel as well as I did last year, although for a long time I felt pretty wretched and fatigued most of the time.  This time I will be very wary and approach lower levels of dosage with extreme caution.  I feel my ill-advised efforts actually set me back by about a year.    

  • Michdonn
    Michdonn amkoffee

    Posted

    For the live of me I do not understand the rush the Rheumies have to get us off Prednisone. We all want to get off ASAP, but none of us wants a flare. Over the course of a couple of years, a few flares will definitely add more Pred then if they let us listen to our bodies and do our own taper. I say listen to your body, take your time, think positive and try to smile. Words from the old ski instructor. ☺️
  • Miki680
    Miki680 amkoffee

    Posted

    So glad you like your rheumy!!  We are all so different in how we can reduce the pred. If you feel more comfortable going slowly, your way, that could work;  if you'd like to try a faster way when that might also work, you could do that, and if there's  flare, take more and go back to the slow way.  Just an idea.  Thanks to everyone for your input, amy

  • EileenH
    EileenH amkoffee

    Posted

    There are other ways of sorting poor bone structure - if that was indead the cause. Has she checked with a dexascan? You DON'T have to bestanding to do bone density - not in Europe anyway. The sort that look at heel density are meaningless - you need the lying full monty version.

    It is all very well forcing a reduction after 18 months or so - but since PMR lasts on average just under 6 years the chances are it will just surface again. And then you will be immobilised and unable to use crutches to walk as your shoulders will hurt (been there, done that, it really is awful).

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    might appeal to her better nature and common sense.

    I know plenty of people on pred AND bone density meds. I don't approve but if it lets they allow you stick on the dose that works for you, sometimes you gotta do...

    • BettyE
      BettyE EileenH

      Posted

      Would you disapprove of Calceos, Eileen?  It was all I had in eight years of Pred. and, as you know, I came out more than ok bonewise. But perhaps I would have done, anyway. Mother had several falls  in her nineties and never a broken bone.
    • EileenH
      EileenH BettyE

      Posted

      Oh no - that is just a natural support to make up for the excess calcium you lose because of the effect of pred. I've taken them the whole time too. Until last spring when I started to develop cystitis so I cut back a bit - but I need to get back in the habit.

      I read somewhere the other day that there is an increased risk of fractures in the first year or so of PMR - which I think is probably as much due to our general clumsiness with PMR as the presence of the inflammation that they suggested. But within a year of stopping pred the risk is back to normal - for a similar reason I suspect.

  • gillian82551
    gillian82551 amkoffee

    Posted

    Hello Amkoffee

    10mg is the dose reached that must be tapered by 1mg at least every 4 weeks, but this not set in stone., It depends on  the individual - everyone is different. From my experience, drastically reducing the dose quickly does not work. This happened to me last year as my muscles had become so weakened I need a wheelchair and the Doc reduced me by 1mg a week. Needless to say, I had a relapse and had to start all over again on 15mg - reduced to 12.,5mg after 3 weeks then 10mg. When I reached 4mg my Rheumatologist put me on a regime reducing very gradually from 4mg to 3mgm over 7 weeks. The body needs time to adapt.

    Do you take ADcal?

    • amkoffee
      amkoffee gillian82551

      Posted

      I tried reducing by 1 mg a month and my body did not like that at all. Well at least when I got two 10mg. So can I try .5 mg every two weeks I think, and it did not work. So I finally decided to try the dead slow method. I have been doing it and only dropping .5 mg at a time. So now I'm going to try dropping by 1 mg and drop down quicker then I was using the dead slow method. I did go from 12 to 11 mg and had no problem. I just can't decide how long to stay at 11 mg before I try 10. I'm really afraid to try 10mg again, I don't like pain and I already have chronic pain from my lower back and from OA and inflammatory arthritis. And so I'm very familiar with and don't like more pain

  • philoso4
    philoso4 amkoffee

    Posted

    Question for most of folks on this discussion:

    Many mention flares and "feeling awful" and pain and so forth from dropping the pred dose too fast. Could I ask all of you to describe in detail what you felt?

    When, for example, you mention a flare - how does it exhibit itself. Is there pain? And is that pain a movement pain (only hurts when you move) or is it more like a headache pain which is there even if you're sitting in a comfortable chair?

    Is the feeling bad like an achy flu, a fatigue, a depression?

    I really would appreciate hearing about it. I want to reduce my meds and I don't care if it just gives me a bit more stiffness. But I don't want continual pain or fatigue.

    Thanks.

    • EileenH
      EileenH philoso4

      Posted

      There isn't an answer - everyone responds to a reduction differently. You have to try it and see if it leaves you feeling in an acceptable state for YOU. Not me, not anyone else - does it suit you?

    • BettyE
      BettyE philoso4

      Posted

      How much is a bit more stiffness? If you reduce and feel a bit iffy for a couple of days then it's probably worth giving it a bit more time. If you're still feeling worse than before the reduction after a week then I think that shows you need to go carefully. That might mean going back to the previous dose and trying again after a couple of weeks. If you struggle on then you might find you have to go back to a higher dose so tolerating too much pain is, in the end, counter productive.

      Only you know how you feel and it won't necessarily match what anyone else feels. It has been said so often.....listen to yourself.

    • amkoffee
      amkoffee philoso4

      Posted

      As others have mentioned it is a personal experience but from your question I get the impression you would like to know what other people experience to use as a reference point. For me I get more than stiffness. I get pain and stiffness. And depending on how much will depend on how long I will try to get through it. And unlike in the beginning when I was first diagnosed my major source of pain is in my arms from my elbows down to my hands. If I continue to wait my hips and upper legs will start getting stiff and sore. Enough that it's hard to walk. And the pain is horrible. My first time I started feeling a lot of pain I thought it was a flare and so I waited two weeks to see if it would pass. It never occurred to me that it wasn't a flare, my body was telling me I needed more prednisone than I was giving it. And of course as soon as I took more prednisone the pain went away. Well that's my experience. Take what you will from it, and understand that your experience may be completely different

    • diana21296
      diana21296 philoso4

      Posted

      When I drop half mg I feel very unwell, out of sorts and bad tempered! My body hates the drop until it has adjusted..about 5 days then I am back to good again usually.  If there is the smell of any pain coming on, I go back up a half for a couple of weeks and then try again when it usually is successful.
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