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Is this normal

Posted , 7 users are following.

jennissw
jennissw

Strange to ask if anything about PMR is normal...I guess I mean normal for PMR.

Ive been coming down 1/2 mg a month by doing .25 every two weeks. Its been fine until I went from 9.5 till 9.25. Now I feel achy and flu like and aching muscles and joints. Not as bad as it was before pred...just a reminder its there. Ive waited a week and no let up so have gone back up to 9.5, disappointingly ....

Should I stick those aches out for longer? Are they normal and does it go?

Jen

1 like, 8 replies

8 Replies

  • ptolemy
    ptolemy jennissw

    Posted

    I tried to stick the aches and pains out last year as I was determined not to increase. It was definitely a bad idea in my case. In the end the GP along with a blood test said increase. I went up 5mg for a few days and then was able to drop 2.5mg almost immediately and slowly went back to the lower dose without problems.
  • tina-uk_cwall
    tina-uk_cwall jennissw

    Posted

    Hi jennissw, your situation sounds a little like what happened to me as I attempted to reduce from 9 to 8 last year. Obviously I know a lot more now and only reduce by .5 at a time.

    then I suffered pretty much like you, in that all the aches and pains returned only not so bad. When I event upped my preds it took at least twice as long that originally to get all the pains and aches under control. Also when I flared and upped my meds I stayed on each .5 dose for 6 weeks so that each dose gad loads of time to do their work.

    The only comment I will make about your every 2 week reduction plan is that it takes a good 2 weeks for each dose of preds to really do their work, so if after 2 weeks you then reduce some more albeit only by .25 you can not really say with confidence that the flare is a result of the current reduction or the last reduction. That's why I reduce by .5, stay on that dose for 6 weeks then I know for sure, if I had a flare, that it was the current dose. But this PMR recovery is very individual so whatever works for you.

    i hope you feel well soon, all the best, christina 

  • MrsO-UK_Surrey
    MrsO-UK_Surrey jennissw

    Posted

    Jenni, oh what a shame.  But at least by doing your tapering so slowly you have been able to pinpoint the actual dose at which the inflammation is sill lurking and ready to take off again.  However, I think it might be wiser to increase by more than just 0.25 to 9.5, instead going at least to 10mg for a couple of weeks to hit the inflammation on the head, otherwise you risk a real 'take-off' which would necessitate an even larger increase.   
  • EileenH
    EileenH jennissw

    Posted

    You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms and - for the moment at least - you have found it at 9.5mg. Getting under 10 is often a sticking point and one group keep their patients at 10mg for a year before reducing further and that seems to avoid flares for many people. You are reducing beautifully slowly so it is unlikely to be withdrawal pain.

    As the others have suggested, unless the 9.5mg works,  I'd go back to 10mg and stick there for a few months and then try your little reductions again. But I'd also stick at the dose every 1/2mg for  a month just to be sure.

     

    • jennissw
      jennissw EileenH

      Posted

      Thanks to all.

      My rheumy is Dr. Quick who co wrote the bristol paper...mind you I only get to see her if lucky, every 4 months - 6 months.

      I started on 15mg in Jan 2014. Had a bad time coming down to 12'5 so she let me go back up and start from 13. I gradually got to 10 but because i have been on a higher dose so long, she felt I need to try and get down some more. 

      I took an extra 1/2 yesterday to get back up to 9.5 and already feel marginally better. So I am guessing this is a dose I need to saty on for a bit. 

      On this dose my weight seems to be dropping a bit...helped by low carbs but that never worked above 10. And my face is looking a little slimmer...although I have been doing face excercises and massage so who knows. But before above 10 nothing made any difference

    • EileenH
      EileenH jennissw

      Posted

      Her paper is an "average" and we are all different. If you need 10 for ages, you need 10 for ages! Grief - it took me nearly 4 years to get below 10mg! I haven't died or crumbled yet. In fact, I feel very well at 4mg.
  • snapperblue
    snapperblue jennissw

    Posted

    Something I learned from this forum is that prednisone does not cure PMR- it only controls some of the symptoms.  As long as the underlying disorder is there, it will crop up again when the prednisone dose goes too low to stop the inflammation. If your PMR is still active, you'll have to stay on an adequate dose of prednisone- sorry!  

    If you try to tough it out and put up with the pain, you will have chronic inflammation and that is bad for you in many ways- immediately, it will take more and a longer course of prednisone to get it under control again.  

    In my earlier reductions, I'd have renewed mild aches for a few days, then things would improve.  When I hit 15 mg, the mild pains did not go away and then worsened over several days.  If the trend is in the wrong direction, I fear we have to retreat.

    PMR is not a foe that can be battered into submission, alas, alack!  It is more like a foe with whom we constantly negotiate. (And, no, we are not happy about this!)    

  • jennissw
    jennissw

    Posted

    Thank you all for your help.

    Im back up to 9.5 and feel okay again...when I say okay, I mean as well as any of us can hope to be with this disease. I will remain on it for a few weeks and try 1/8th increments this time. I take the coated kind and just use a low as poss dose of the white ones. I take 10.5 one day and 8.5 the next...I had cur that to 10 and 8.5. next time, when it feels right i will do 10.25 and 8.5.

    I am aware how and why the pred works and that it is not a cure. But it would be good to get to a maintenance dose that sees off some of the side effects, especially would be nice to actually it into some of my summer clothes. I am losing weight so hopefully by the time its hot.....watch this space, ha ha

    Jen

     

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