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How to reduce preds below 5mg daily

Posted , 14 users are following.

julian99981
julian99981

Good afternoon.

I have had polymyalgia for about 4 years now and after several flare ups I'm at 7 mg which is the lowest dose I have ever been on and only have pain in my hands as it often moves around my body.

Can anyone please tell me the best method for reducing below 5mg please.

I've tried the method where as you reduce for 1 day a week over a 7 week period but this has never really worked for me but could work now unless anyone had any better method.

Many thanks

0 likes, 30 replies

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  • TIsser
    TIsser julian99981

    Posted

    Like you Julian I am on 7.5 after 4 years, I am now reducing by 2.5 instead of the 5mg usually advised, so far I am doing ok. A little discomfort around hip area and feel a little stiff sometimes in the early am which wears off when moving around. Am going to try 7 mg when I feel it is the right time for me.  Wish you lots of luck. 
  • jean39702
    jean39702 julian99981

    Posted

    Julian, if and when I'm fortunate enough to get to 7 mg I won't reduce more than ,5 mg at a time and will likely stay at each level for an extended period of time using the Dead Slow Nearly Stop (DSNS) plan.  I've had PMR for 3 1/2 years and am presently at 10.5 mg.from an original starting dose of 40 mg. I found out the hard way how sensitive I am to drops in prednisone and have bee reducing at .5 since reaching 15 mg.

     

    • Twopies
      Twopies jean39702

      Posted

      Thanks...what do you consider an extended period of time?  I'm trying to figure this out...I'm at 6 mg. for the second time, and have fatigue and groin/hip stiffness like never before...at least, on the higher doses, it wasn't nearly so noticeable.  Now in the mornings I do dishes, sit down, make the bed, sit down, etc.  sometimes in the evenings I am wiped out.  But some days I can walk 8000 steps.  Go figure.  (Although I don't think I'll be trying that again for awhile because of the aftermath!). I'm not a patient person, I'm trying, but obsessing along the line....

  • jean39702
    jean39702 julian99981

    Posted

    Julian, what I mean by an extended period of time is that I will hold at a level for anywhere up to a month or two before trying another drop of ,5 mg.

    I hesitate to offer direct advice because we all have to do what we feel best for our own bodies based on our experience.  However, it would appear to me, based on your level of pain and fatigue, you may have dropped to 6 a little too quickly and may also be doing too much. From all the reading I've done on this forum and other sources, it gets really tricky as you drop below 7 mg as that's when our adrenal glands have to begin waking up. It can be a long slow process and fatigue appears to be one of the major drawbacks.

  • Michdonn
    Michdonn julian99981

    Posted

    Julian 99981, I flared reducing from 8 to 7 mg, 1 mg a month. Next time under 10 mg I will use DSNS and hold 2 weeks to a month between cycles if I can get the Pred. I would even consider reducing by .5 if the Pred was available. Think positive and keep smiling. 🙂

  • pauline36422
    pauline36422 julian99981

    Posted

    hi julian   i a m 5 years in  and after 2 flares i am down to  3,and quater.. i do it by   a 1/4   each time.   its a long haul it takes 3 month to get  down by    1mg       i am bout to drop   my next  quater.   so it will be    3n  quater  for 5  days then  2 days at  3   then back to  3n quater for   3 weeks the n stay at  3   for  a couple fo weeks.  if no pain alert.

    i then start again.        but i do  have  pain i stay at 3 longer.  to see how i go. i know itsa bit messy   its trial and error     good luck to u    

    • Michdonn
      Michdonn pauline36422

      Posted

      That great pauline36422, how small pills are you able to get. The smallest I can get, it small and do not know if I can cut it. I have a pill cutter and cut my 5s okay. Thanks keep smiling 🙂

    • pauline36422
      pauline36422 Michdonn

      Posted

      hi mich   i ami  on 1 mg   i cut them with pill cutter.   they dont always  cut evenly  but   if one piece comes smaller than the other   i dont worry too much as i think i will use  them  alternatly.     it seemd to work tho.  my shoulder pain seems to be  going  and  lower back also,    hope i am not speaking too soon  touch wood  x

       

    • celia14153
      celia14153 pauline36422

      Posted

      Hi - In the UK I get 1mg Pred tablets - have you asked your health care doctor if they are available? It does make cutting easier!
  • daniel08939
    daniel08939 julian99981

    Posted

    Julian,

           Reducing below 5 mg I believe is much more difficult then getting from 10 mg to 5 mg. I have reduced by 1 mg a month from 10 mg to 5 mg with no flares or problems. I am now at 5 mg and I plan to reduce by 1/2 mg per month. If when I reduce I feel pain, I will go back up to the previous dose for two weeks and then continue down at 1/2 per month. If that works I will be at zero 11 months from now. I have been on prednisone 7 months. If I make it I will be at zero after 18 months. That is a relatively short time frame. Last time I got from 10 to zero in 29 months.

    • Twopies
      Twopies daniel08939

      Posted

      I will be very interested in how this works for you...fatigue and stiffness and soreness has been my nemesis ever since trying to go below 5--I'm now back at 6 for awhile and while I'm a little better, it's not much...so hope you keep us posted. Best wishes...

    • EileenH
      EileenH Twopies

      Posted

      Then you possibly need 7mg to manage the inflammation - fatigue below 7mg is one thing, that is most likely adrenal function still not being up to par, but the stiffness and soreness are more likely the PMR. Ignore it, try to force a further reduction, and you run the risk of a full-blown flare.
    • EileenH
      EileenH daniel08939

      Posted

      Men often have shorter courses of PMR - it is almost like a different disease sometimes. And it is probably due to hormones.
    • Twopies
      Twopies EileenH

      Posted

      Saw my gp today--told him about extreme fatigue, stiffness, general overall feeling terrible.  Weepy, exhausted, etc. especially in the mornings.  I perk up a little in the afternoons but not a lot. yesterday I had to sit down in a store.  I've been back up to 6 mg. after having bombed out at 4 1/2 mg, 2 weeks ago.  Asked his opinion on whether I need to go up to 7.  Well.  He thinks there is something else going on because I should be feeling better below 10 mg.  (I had complete blood panel done today, will get results tomorrow).  I told him about the new mayo study but his thinking is that his patients get better in 12-24 months,  he is sweet and understanding so I stick with him, he lets me do what I want.  (the rheumy I saw early on is not).  

      My gp kinda left it at do what you want with the pred but in his opinion it would be very abnormal to go back up...so here I am..again.  Is my extreme fatigue, blubbering, and inability to do much of anything beyond sitting a sign that I need to increase the pred, or is it my body trying to catch up in production of cortisol?  I'm leaning to increasing the pred...thanks!

    • pauline36422
      pauline36422 Twopies

      Posted

      well twopies

         if it was me  i would go up to 7.   for a couple of days  see how u go on.    you can always go back down  after a couple of days    you can adjust  it with in a couple of days.       see what   eileen says   also.x

    • EileenH
      EileenH Twopies

      Posted

      Yes - pauline is right, you could try a few days higher and see if it helps you. Apart from the 12-24 months (goodness knows where they get this idea from!) your doctor sounds good, BUT why does he think you should feel better below 10mg? You won't if the PMR is more active than you dose can cope with.

    • Twopies
      Twopies EileenH

      Posted

      Thanks to you and Pauline so much...I feel rather desperate in this journey (probably about like everyone else on this forum).  It helps me to no end to have this kind of support. I went back up to 7 today, feeling very betrayed by my stupid body. Already I'm feeling a tiny bit better which I'm telling myself can't be psychological, it most surely has to be the increase in the pred even though I doubt it works that fast. Thks again for listening to me.

    • EileenH
      EileenH Twopies

      Posted

      One mg can make a big difference - and if it is what you need, whether to wipe out the inflammation or to comfort your lack of adrenal function, it could well work that fast.
    • Michdonn
      Michdonn Twopies

      Posted

      Twopies, PMR can be a bumpy journey, think positive. I was tapering to 7 mg and had to go to 30 mg to get any relief. Stay on 30 for 6 weeks, started walking each day, increasing a little bit at a time. I now think the active has helped me a lot. Now at 17.5 reducing to 15, My Rheumy wants me reducing by 2.5. I also am using a modified DSNS, which she does not want me using. Life is a balancing act. Once I get to 10 mg 1 mg reduction till? I will listen to my body. I will not reduce if I have any PMR PAIN! Smiling 🙂

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, do you think that ashwagandha could help on low doses of Pred?
    • Twopies
      Twopies Michdonn

      Posted

      Thank you! I'm not patient, always hopeful the pmr will go "poof!"  Just got lab results--everything perfect, they said. So I can stop obsessing over that.

      I was never on 30, they started me at 20 which gave me lots of problems--I read that low weight women should be started at 12.5--someday I will post my experience with 20 mg--anyway, I worry about not being able to exercise, about my muscle loss, the overall malaise, the resultant isolation and on and on. Thks for the good words--hoping you are well on your way to post-pmr.

    • Michdonn
      Michdonn Twopies

      Posted

      Twopies, you are welcome. I will be happy just to get under 10 mg again. The walking has helped me feel better, I walk hard to try and keep my muscles and bones strong. Time will tell, but I am staying positive. Smile on my face! 🙂

    • Michdonn
      Michdonn EileenH

      Posted

      Well EileenH, when I get down there if I am not doing good I may try some. I hope you are off Pred by then!

      Think POSITIVE! 🙂

    • EileenH
      EileenH Michdonn

      Posted

      What on earth do you think I do every day? I wouldn't be here if I didn't!

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