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Dead Slow

Posted , 10 users are following.

tony09890
tony09890

I’ve been reading about the deads slow and almost stop tapering method, but it seems that all who are tapering down are still feeling the effects of PMR, does it ever go away or is it just a matter of getting the pain to the lowest level and modifying your lifestyle to suit.   Whilst I was tapering from 15 to 11 the pain never worsened but neither did it get better.   Once I got to 10 however, it got real bad and the Doc upped my dose to 25,   even at 25 I don’t feel any better than I did at 15 or 11.   What’s the go?

1 like, 13 replies

13 Replies

  • dan38655
    dan38655 tony09890

    Posted

    I am wondering the same thing about my own taper, will be 2 years in December.

    If I recall, half or so will fully recover with no need for Pred within 3-4 years.

    My own taper got stuck at the 15-month mark, I am only intermittently been able to reduce from 6 to 5mg, this being near the point where my adrenals have contribute cortisol to keep the inflammatory response at bay, but it is a slow go now.

    I am monitoring lifestyle factors like diet and exercise to see what helps, but the effects of such seem minor. I expect to be off pred perhaps in 7-8 months, but that's just wishful speculation I have to admit. I'm 55 and do a lot of bike riding, which is one activity that I have adhered to no matter the level of symptoms, and no regrets.

    • constance.de
      constance.de dan38655

      Posted

      It does seem that men with this illness seem to get off Pred quicker than women.  Question:  Have any of our male 'friends' on here been on Pred more than 2 years?

      Actually, Dan, you are lucky!  "I do a lot of bike riding".  Many of us needed help to get on/off the TOILET at first.  When in Rehab they put me on a bike and within a couple of minutes I felt as though my hips were splitting in two.  I collapsed - they never tried it again!

      Anyway, Good luck!  Take it slowly!  We'll get there in the end.

  • ray12929
    ray12929 tony09890

    Posted

    i was lucky I only took 10 months to get over it but even then I had to go up and down a number of times..i did feel better but  when on the lower doses because i only went down when I felt good and no pain..i usually had a day or so of pain on the lower level before it slowly went away as well.
  • Sheilamac_Fife
    Sheilamac_Fife tony09890

    Posted

    I have been one of the luckier ones in that I haven't really had pain since starting Prednisolone. When tapering, if I felt the stiffness or pain beginning to return that told me that I had gone far enough. (Or too far...) and stayed on the original dose a few days longer before trying again.

    I find that provided I only taper by 0.5mg at a time, I do not have pain and can move straight on to the next taper. I am tapering to 7mg at the moment and the fatigue is the worst thing. Hoping my Adrenal system will wake up soon.

     

  • flydog
    flydog tony09890

    Posted

    Hi Tony, I'm new to this site, and have still a lot to learn, I keep seeing people tapering down 1or 2mg but all the tablets I've seen are 5mg!!, can anyone clear this up for me.
    • Silver49
      Silver49 flydog

      Posted

      There are 2.5 and 1mg tablets so when you are at that level of change you can adjust the tablets accordingly. The 1mgs can be halved if they are not coated. I haven't done this yet but others have so can advise.
    • flydog
      flydog Silver49

      Posted

      Thanks silver, thats cleared things up a bit
    • ptolemy
      ptolemy flydog

      Posted

      There are coated tablets which cannot be split red 5mg and brown 2.5mg. Their advantage is they get to the bowel before being absorbed so tend not to cause stomach problems. There are uncoated white ones which can be split which go down to 1mg, so you can split it into .25g if you are really careful, these are more likely to cause stomach problems than the coated ones. I take a third one which is also coated called Lodotra in Europe and Rayos in the US, 5mg, 2mg and 1mg, this is also coated but is taken at 10pm in the evening rather than the morning which is recommended for the others.
    • ptolemy
      ptolemy constance.de

      Posted

      It is an RA drug originally, it is actually coated pred. It has been passed for PMR in several European countries now though and licences are being applied for in others.
    • ptolemy
      ptolemy

      Posted

      I should have said there are other steroids occassionally offered, 
  • tina-uk_cwall
    tina-uk_cwall tony09890

    Posted

    Hello tony, it just goes to show how this condition effects us all in different ways. I was 52 when diagnosed with pmr and I can truthfully and luckily say that I am one of the lucky ones that within 4 hours of my very first pred dose I was skipping up stairs and within a month or so you would never have known there was anything wrong with me.

    now I'm on preds I do not suffer from any pmr pains at all so the preds, in my case, have elevated all pmr pain. 

    My reduction plan was in line with the Bristol plan but when I got to 9mgs and attempted to reduce to 8mgs I suffered a flare. That was about the time I began to log onto this forum and quite by chance the discussion was about the dead slow and almost stop reduction plan that is recommended from 10mgs downwards. I am now at 7mgs and again I have no problems. I only ever reduce by .5 and it takes about 2 /3 weeks for the reduction plan then I stay on the new reduced rose for 6 weeks so I am reducing very very slowly.

    things have slowed down even slower since September when I b one my heel and then ended up in hospital with numerous substantial pulmonary embolisms so at the moment I am on extra meds and I have to take things very slowly.

    tyere us a theory that if patients do not respond well to preds, that would be less than 70% then perhaps Drs aught to think about another diagnosis.

    oh yes, at the higher doses of preds I never suffered any effects from fatigue but between 8.5-7.5 I did suffer very mild fatigue. Now I have no problems with fatigue at all.

  • tony09890
    tony09890

    Posted

    In Australia prednisone is available in 25, 5 and 1mg tabs.   I have no choice but to use a pill cutter.   I have read of an alternative, instead of using a pill cutter you taper by having 5mg one day and four the next, then repeat.   After stabilising you change to 5mg one day followed by 3 the next and repeat again until stable. 
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