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Question about tapering and symptoms

Posted , 15 users are following.

JW89
JW89

Hello all - I have a question about whether my symptoms are normal during tapering.  I'd been on 10mg, tried to taper straight to 9mg - unsuccessful as various aches and pains came back pretty quickly.  I went back up to 10mg until things settled down, then went onto DSNS taper.  All good until I got to 1 day old, 3 days new - on the third day of new (9mg), everything started hurting again.  That was on Thursday.  Admittedly, all the pains weren't nearly as bad as things were at the very start of this journey, but are they part of a normal taper, or it is a sign that I'm reducing too quickly for my body?  

I'm sure I've read somewhere that it's not uncommon for the body to complain a bit during tapering, but the issue is whether things improve over a few days, or get worse.  So I'm confused as to whether to stick it out for a bit longer (how long?) to see if things settle, or if I'm better going back up to 10mg until I get comfortable again and then try tapering by 0.5mg?

 

0 likes, 39 replies

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  • adette01750
    adette01750 JW89

    Posted

    Hello JW89

    I get pains on the 3rd day and need paracetamol to settle at night for about 5 days so the taper is fine for 3 days as you say, but then my body complains for a further 5 then improves over the next few days and I stay at the new dose for a month or so before thinking of reducing again.

    also I can't taper by 10% it's too much for me so I agree with other people a 5% taper might help.

    Good luck and take care.

    • Anhaga
      Anhaga adette01750

      Posted

      I agree.  There is always a point in a taper when I think this is it, I'm going to have to stay here or increase slightly.  Whether it's the other things I do to try to reduce inflammation or just patience, I think it's a combination of the two, I've always been able to complete the very slow taper.  I usually reduce by .5 at a time, and up to this point have dropped a further .5 halfway through the taper.  At 3 mg working towards 2.5 I'm not dropping that second .5 mg.  Will give each half mg the time it needs.  Getting better at splitting tablets!

    • adette01750
      adette01750 Anhaga

      Posted

      Hi Anhaga

      do you mean splitting the actual tablet, I have bought a tablet splitter from the pharmacy £1.29 it's brilliant. 

    • Anhaga
      Anhaga adette01750

      Posted

      Yes, although my pharmacy gave me a free one, promoting some drug company but I don't mind that.  I've been using up a rather large supply of unused 5 mg by turning them into 2.5.  Yesterday I calculated I had enough for nearly 3 months worth at that rate.  It's easier than splitting a tiny 1 mg, but someday that will come....  

  • Lee-Colorado
    Lee-Colorado JW89

    Posted

    I reduced at 1/4 mg a step when I hit 10mg. It looks like this, 

    9 3/4 one week, 9 1/2 the next week, etc. It takes about 4 days for my body to stabilize after reducing. When I hit 9 I would look at how I felt and then continue with the next step.  It took 2.5 yrs to get to zero, where I have been for 4 months. There were several times I had to go back to the previous level and stay for two months. Medical texts indicate that at 7-8mg your body has to pickup the load. That took timers I was stuck at 7mg and 4mg for a time.

  • tpaggs
    tpaggs JW89

    Posted

    I would alternate; one day 10; one day 9 and do that for about 2 or 3 weeks.  If all is well, then 9  mg for 2 or 3 weeks. Then alternate 9 mg one day; 8 mg one day for 2 or 3 weeks.  That seemed to work for me until I reached 2 mg/a day.  Now, I seem to be stuck there, but at least I got down to 2 mg.  It's worth a try.

    • sharon21683
      sharon21683 tpaggs

      Posted

      Hi,

      I am also at 2mg prednesone after having PM R 18 months. I have been at this level for almost 4 weeks so I am starting to add 1 1/2 mg. in the DSNS method. Wish me luck! I am like Mark .... Shooting for zero!

    • tpaggs
      tpaggs sharon21683

      Posted

      Hi,

      ?I tried the DSNS method and it didn't work for me.  I went back to the alternating method 1 1/2 mg/day; alternating 2 mg.  I'm in the 4th day (thought I was getting symptoms last night - headache but feeling better this morning).  I'm praying I can stay with  this 1 3/4 mg for 2 weeks.  Like you and Mark, I, too am shooting for zero!

    • Anhaga
      Anhaga tpaggs

      Posted

      Well we all shoot for zero but there's no point if the disease is still active.  Teach me how to deactivate the disease and I'll listen!

    • tpaggs
      tpaggs Anhaga

      Posted

      My hope is that the disease will eventually deactivate itself.
    • sharon21683
      sharon21683 tpaggs

      Posted

      Hi,

      I'm glad you mentioned the alternating days because that's what my Rhumatologist suggested back in May when I successfully was taking 3mg and 3 1/2mg on alternate days. I thought I would try the DSNS method but it takes longer. So far things are going good at 2 mg. and slowly adding the 1 1/2mg but I feel great so I am thinking about alternating again. I find that if I keep my workout routine I feel so much better and after 18 months with PMR I know the difference between sore muscles from Working out and PMR flair. Best of luck to you... I will let everyone know when I am at or near zero! 😊👍

    • karen81902
      karen81902 sharon21683

      Posted

      what do you all consider a flare up.  Sometimes i am sore behind my thights.  Nothign terrible.. I take an aleve and it is gone.  I do not have it everyday.  Just once in a while

      thx

  • kathy67492
    kathy67492 JW89

    Posted

    I recently tried a .5 taper using the DSNS method and was good until the last couple of days!...then Wham! Major flare. I have had tapers where this did not happen. I think you should stop the taper...my opinion.

    i am currently at 9m coming out of a flare after trying to taper from 7-1/2m to 7m using the DSNS method. Wish you the best...

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