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is this pred withdrawal?

Posted , 11 users are following.

shirley40391
shirley40391

After about 3 years of treatment for PMR I am finally at 3mg predisolone but i have started to feel very strange. Feel sort of flu - ey in my body, I can suddenly start feeling very hot. Also I can feel light-headed and very tired and generally not quite right.

No pain but can be a little stiff in bed and when i first get up

Trying not to panic that it may be something nasty....

Any thoughts or experiences gratefully received.

I have made an appointment to see my doctor next week ( first available)

0 likes, 23 replies

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  • EileenH
    EileenH shirley40391

    Posted

    It sounds very like your adrenal function hasn't quite caught up with your pred reduction. That can cause similar symptoms. 

    Just remember that 

    1) you are not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms.

    2) once you are below 5mg the dose is fairly insignificant in the side effects context. Your body NEEDS the equivalent amount of its own corticosteroid, cortisol, to about 7.5mg of pred just to function properly. Above that dose it does not make any cortisol, below that dose it has to make a top-up amount. If it is struggling you will feel less well.

    3) This isn't a race - you have all the time in the world to do it slowly. Often going more slowly gets you there sooner - tortoise and hare! If you rush, you get a flare and have to go back to a higher dose. Which isn't the object!

    • maggie67878
      maggie67878 EileenH

      Posted

      Hi Eileen

      Can I say 'thank you' for the above comments, which are extremely helpful to me as well. 

       

    • shirley40391
      shirley40391 EileenH

      Posted

      Thank you so much for your very informative reply.

      I am just completing my first week on 3mg per day and the schedule I am following means I stay on 3mg for 4 weeks before moving on to a pattern of 3,3,2mg continuing for four weeks, then 3,2,2 for 4 weeks and so on.

      I note with interest that the schedule posted by daniel suggests 3mg for 90 days. Do you think his timetable is the one to follow?

      I have done well enough so far but realise that more care needs to be taken when reducing these lower doses.

      Many thanks again for taking the time to reply and keep us all informed.

    • EileenH
      EileenH shirley40391

      Posted

      It depends - one top UK rheumy keeps his patients at 5mg for up to 9 months, this one seems to wait longer before allowing the adrenal glands to catch up. On the other hand - if you feel well and are not experiencing increasing fatigue you are probably fine and could continue as you are.
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