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Plan to reduce prednisolone

Posted , 14 users are following.

Cyn1965
Cyn1965

i have been on prednisolone for a month 10mg.  I saw my Rheumatologist today, and he told me to stay at that dose for another month then try to reduce my dose by 1/2 a pill (2.5 mg) and see how it goes.  He says if I feel good stay there and if not go back to 10mg and wait a month before trying again.  Thoughts or experiences anyone?  Do you all wait a month on a new dose before trying to reduce again?

thanks a bunch!

1 like, 12 replies

12 Replies

  • Michdonn
    Michdonn Cyn1965

    Posted

    Hi Cyn1965, how are you feeling? Do you have any PMR pain? I need 30 mg for about 6 weeks to get PMR pain free. I do not taper dosage if I am not PMR pain free. I use the DSNS method to taper: https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439. And try not to taper great that 10%. Try to go slow, this is not a RACE! Good luck on your journey. Think positive and try to smile. Smiling 🙂

    • Cyn1965
      Cyn1965 Michdonn

      Posted

      I'm pretty good, some residual aches in the shoulders but the doctor tells me that that is ok and that it is never 100%.  He says that he doesn't want to increase the dose, even when I fall sick with a virus and the aches get worse he doesn't want to increase.  He says that some people start with the drug higher than my dose but that there are so many side effects so he tries to stay as low as possible.

      Thanks for the link I will check it out.  I have only 5mg pills (one am and one pm) so he told me to reduce by half a pill which is more than 10%.  I doubt it will work because I am borderline painless here.....that's why I wanted feedback from other people who have tapered.  His goal is to get me to 1.5 pills/day.

    • Anhaga
      Anhaga Cyn1965

      Posted

      Just responding to doctor's comment that your shoulder ache "is ok and ... it is never 100%".  It's true that some people do experience some residual discomfort.  It may be the PMR itself or something else.  However I can tell you that in my early days on pred, all the way down to about 9 mg when my osteoarthritis began to re-emerge, and I began to experience some pred withdrawal pain, ALL my pain went away.  Even when reducing I have experienced some return of PMR "niggles" but I do not reduce if there is not a time during the 24 hours between doses when these have not either gone completely or become of absolutely no consequence.  If they are enough for me to be aware of, or to cause me actual discomfort when living my normal life, I know I need to slow down or temporarily stop taper.  The benefit of a very slow taper is it gives you a chance to sort out which pain is pred withdrawal and which is actual PMR activity.  As the others said at 10 mg you are at a level where a very slow taper is the best idea.  You may very well be able to reduce by 2, 2.5 or even 3 mg by your next doctor appointment in three months if you use a combination of  5, split 5 and 1 mg tablets, you just won't have done it all at once.  

      https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    • EileenH
      EileenH Anhaga

      Posted

      And I just want to add to Anhaga's post: I have no left-over PMR pain when I am on the right dose of pred. If I have pain I have either gone too low or it is something else - such as myofascial pain syndrome. If I get that treated as a separate issue - I need less pred for the PMR.

      Part of the trick of living well with PMR - and yes, it is possible - is to know your body and its aches and pains really well. 

    • Kdemers
      Kdemers Anhaga

      Posted

      Great response. thanks for taking the time
  • Frit
    Frit Cyn1965

    Posted

    In the UK we are able to get 1mg pills : I started on 15mg staying on dose for a month reducing to 12, 10 , 9, and 8 and then on 7 for 6 weeks and now on 6 for six weeks. GP has advised to go back up to 8 if I have a flare up. So kind of fits if you can only get 5mg pills? Great if the low dose of 10 mg has worked and you are pain free but my reading of this great forum is not to reduce if you still have pain and to reduce slowly. If I do get a flare up I will definitely try the DSNS method . Hope this helps and good luck.
    • Cyn1965
      Cyn1965 Frit

      Posted

      Yes I have minimal pain so the doc want me to wait another month before trying to taper.  He says if I try 1/2 a pill less (2.5mg of my 10) and I feel pain to go back to the regular 10mg for another month and try again.  I will speak with the pharmacist to see if whenI am ready to taper perhaps they can give me 1mg tablets so that I can play a bit with the dosage.  I see the doctor in 3 months
  • nick67069
    nick67069 Cyn1965

    Posted

    It is not recommended to reduce more then 10% of the dose. In your case 1mg reduction would be more appropriate. It is my opinion that 2.5mg reduction will be hard for you. I would ask for 1mg pills, so your reduction can be more gradual. Use DSNS method that Michdonn posted link to guide you thru reduction.
    • Cyn1965
      Cyn1965 nick67069

      Posted

      Thanks nick, I think so too I will ask the pharmacist to supply me with 1 mg tablets...will try to get to 9mg from 10 and so on.  Are the tapers done once a month?
  • EileenH
    EileenH Cyn1965

    Posted

    You need the best part of a month to know if the new dose is still enough - esoecially when he is set on reducing in such big steps. You aren't reducing the dose to get off, you are reducing to find the lowest dose that manages the symptoms as well as your starting dose did. That isn't at all the same thing. If the dose you need is 8mg and he reduces the dose to 7.5mg, it will not be enough and the inflammation will mount up again until you have a flare. In that situation, if you reduce again too quickly you would then have a flare - but it then wouldn't be at all obvious where the borderline is. You need time to find that out - each time you reduce it needs to be from a point of stability. 

    He is using a most unusual approach - I can only hope it works for you.You may well only need 4mg - but you can't know in advance and in the early days the activity of the disease can be quite high, needing a bit more pred.

    • Cyn1965
      Cyn1965 EileenH

      Posted

      Wow Eileen you are soooo knowledgable!!!

      I will wait a month before reducing a second time

  • Reeceregan
    Reeceregan Cyn1965

    Posted

    I agree wholeheartedly with Anhaga and Eileen’s comments.  I am 62 and started on 50mg 31.5.17 and have tapered to 9mg, now reducing by 1mg monthly using the DSNS method. My inflammation rate was 53, now 2, but it hasn’t been all smooth sailing tapering over the past 6months from that high a dose. I highly recommend using DSNS from 10 mg down, if not before. I do this over a 27 day cycle. I do have residual pain in my shoulder, back and hips but as Eileen said, get to,know your body because none of my pain is PMR or withdrawal related. I know the difference, I’ve had the tapering  and pred withdraws pain. When PMR first got me it got me good as they say, I was basically a bedridden invalid. I also got the frozen shoulders so no arm movement either. I also have GCA so my pain was quite excruciating. Now I know my shoulder pain is residual from a rotata cuff impingement...common problem from severe PMR. My back pain is from my pre-PMR lower back bulging discs that like to have their say now and then, and my hip and butt/glute pain is my piroformis muscle telling me it wants a visit to my massage therapist. We are all so different so what works for some won’t work for others and PMR didn’t read the rheumatologist medical journals so it  does it’s own thing when and where it pleases and you have to be aware of what your body is telling you. I know my next 10mg taper down hopefully to nil will be the longest and hardest but I will not rush it. Rheumy wants 1mg per month till I get to 7mg ovsr the next 3 months, he is dead set on getting me off the pred mainly because I have also just been diagnosed with sever osteoporosis with a T-score of  -4, and I am about to start another drug as well called Prolia. Regardless, as I said, I will not rush the taper if the pain returns, I’ll stay on the dose for longer tha  a month or increase a few mgs if I have to. My challenge now will be sorting out what pain may be from too low a dose, or from the new drug. Wish me luck, and I also wish you luck on this frightful journey we all face. Try to,keep a positive attitude above all else, it really does make a huge difference. I wil not let this beat me, I have too much living to do. Gosh...I’ve only just retired! So many plans .....💪

     

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