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PMR, Tapering the prednisone

Posted , 8 users are following.

kathy67492
kathy67492

i am tapering my prednisone from 9 mg daily to 8 mg daily. It has been two weeks on this taper. I take the MEDS at 8 a.m....still feeling stiff at 11:00 a.m.

is that the prednisone withdrawal symptom? Thanks.

1 like, 8 replies

8 Replies

  • EileenH
    EileenH kathy67492

    Posted

    Did you go straight from every day 9mg to every day 8mg? Did the change in feeling the stiffness change immediately or has it taken a week or so to appear? If it was the former it was probably withdrawal, if it has taken until now to appear it is more likely to be that the dose is very slightly too low and isn't clearing the inflammation as effectively. You can avoid withdrawal by tapering the change over a few weeks and ther are details of a scheme elsewhere on the forum.

    You might find it works better if you take the pred earlier in the morning. The substances that cause the inflammation are shed in the body at about 4.30am. The pred takes a couple of hours to get to work so the earlier you take it the less work it must do to combat the inflammation. The ideal time to take it is at 2am, then it is sitting there ready and waiting for the inflammatory substances and they never get to work in the first place. Many patients take their pred (with a sandwich or yogurt) when they first wake and then settle down for another couple of hours in bed by which time the pred has got to work and the morning stiffness is no more.

    And of course - it may be that 9mg is your maintenance dose for now. It doesn't mean you won't get lower. Just maybe not yet.

  • kathy67492
    kathy67492

    Posted

    Thank you, Eileen. Sorry, I forgot to give the details! I did not go from 9 to 8 directly...I am doing your suggested taper....every so often there is 9 mg in there. Guess I will take the Pred a little earlier...and stick wth the 8 mg for at least 6 weeks. Sometimes I am so foggy, can't keep it straight. good thng I have the tapering s heckle written down and refer to it every morning!
  • tina-uk_cwall
    tina-uk_cwall kathy67492

    Posted

    Hello Kathy, I do sympathise, I sailed through the early rounds so to speak, 15mgs, 6 weeks, 12.5 mgs for 6 weeks, 10mgs for 6 months, then 9mgs for 6 weeks, then I attempted the straight reduction from 9mgs to 8mgs and all hell let loose!

    now I'm reducing by a half each reduction. Very slow but I'm sure much better for you. Currently I'm on 9.5 one day 9 the next and I'm keeping my fingers crossed.

    Eileen may I refer to the difference between withdrawal and a flare. The more I read about this dilemma I wonder if last time my so called flare was infact withdrawal. The reason I say this is because the PMR pain returned within 2 -4 days. I appreciate that if the PMR pain returns at about the 7-10 day stage, that's more likely to be a flare and therefore you up the the dose back to the last dose that you were comfortable at, but if it's withdrawal, what would I do then? Last time when the PMR pain returned within the 2-4 day timeline 14 days later I was still experiencing the PMR pain that had stabilised and was very painful. That's why I upped the dose back up. But how long should the pain last for before it either should begin to ease back or that I should interpret the PMR pain as a flare and so increase my dose back up?

    i'd value your advise as although I know I have to reduce and I am doing just that very slowly, there's a little bit of scarey apprehension every time I reduce? Regards christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      It is most likely that steroid withdrawal will manifest on the first day of the new dose - it is your body reacting to having less of what it is used to. Then that should get less over the next couple of weeks as your body gets used to the new lower dose. Some brave people take even longer when they tough it out cold turkey! That's the idea behind my taper - you might feel strange on the day you take the lower dose but the next day you comfort your body with the old dose. I feel grotty for the first 3 or 4 times I take the lower dose but then my body says, OK, fine, I accept.

      You are at a dose that is often difficult - and it does seem to be the dose that many people need to stick at for a few months or even accept that this is the current maintenance dose. I never got below 9mg/day for over 3 years - you will get lower. Just maybe not yet. And forcing a reduction when your body isn't ready will just result in a flare and a higher dose being needed - exactly the opposite of what you wanted.

    • liz12234
      liz12234 EileenH

      Posted

      Hi i have upped my dose to 15mg to try and combat this ache behind my knees, i see you suggest taking it in the early hours does that help everyone do you think and do you take all the pred at once even 15mg, at the moment i am taking it 3 times a day after meals it just says take 3times daily on label. I am finding this forum really useful. My last blood results were normal but im still worried ab this ache so will persevere
    • tina-uk_cwall
      tina-uk_cwall liz12234

      Posted

      Hello Liz, it is normal that the dose, any dose of prednisolone is taken all at once for maximum impact. I wonder why your GP suggested taking the dose  3 times daily. I am wondering if maybe your existing Pain behind your knees is due to this. Regards, christina 
    • EileenH
      EileenH liz12234

      Posted

      No - you get a far better antiinflammatory effect taking the dose in a single dose as early in the morning as possible. That is the recommended way for PMR as it also achieves a lower side-effect profile. Some people have commented that taking it in one dose helps, others that taking it early am helps - but like everything else with PMR and pred everyone is different. A few people have woken to take it at 2am - that's dedication for you! However - a single morning dose is fairly much the best case for everyone. For a few people the effect doesn't last until the next day - and they may benefit from taking about 2/3 in the morning and the rest of the dose in the evening. Others find that late evening helps a particular side effect for them, others find that it keeps them awake.

      A couple of ladies have had aches at the back of their knees - I can't remember what it was, but you get to know your own bad points and how best to deal with them. It may remain for a long time - you are really just looking for a noticeable improvement - not 100% I'm afraid. But pred does improve your quality of life - and you learn to balance things. Resting and pacing yourself are essential though - no doing the spring cleaning because you feel better, because you won't if you try that!

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