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Tapering Prednisone Question

Posted , 6 users are following.

gilman
gilman

Luckily, I have been able to manage my issue with 10 mg. 5 at dinner and 5 at 2:00 am. There are a few days when I feel a higher dose would help but I want to know if I do take say 15 mg for a few days will I have a hard time getting back down to 10?

Given the choice I would rather have some discomfort than have to go backwards and take more weeks to taper my dose.

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH gilman

    Posted

    It all depends - if the dose isn't enough to manage the recurring daily inflammatory substances then there will be a build up of inflammation and eventually it will overflow and you will have a real flare which can put you back to the beginning.

    You shouldn't have problems getting back to your current dose if you only take a higher dose for a day or two - but everyone is different and some people are very sensitive to dose changes.

    There is no virtue in "managing" a bit of discomfort if the end result is to have to go back to a higher dose for longer to control a real flare - you have lsot all the advantage of having pushed a reduciton. Eventually you learn it isn't worth it.

  • dan38655
    dan38655 gilman

    Posted

    I also split my dosage, 6pm and 11pm most days.

    I have sometimes had to supplement or "spike" my dosage briefly, and usually an extra one or two mg did the trick.

    For a bigger dosage spike, I would start with the full extra dosage and then taper it back to normal within a few days to avoid any pred witdrawal effects.

    It have found it best to react quickly to any need for additional dosing, which seems to keep the total increased dosage and duration to a minimum.

    I also respond to any increase in symptoms by getting in solid daily exercise at each day's energy level peak, and restrict my diet in terms of any heavy foods, especially restaurant fare or rich prepared foods.

    Exercise seems key, but we pmr sufferers really need to home in on what type, level and duration of exercise that we can tolerate daily, preferably early in the day. I found that getting sufficient exercise with well-controlled pmr took longer for me to do comfortably than if I did not have pmr, so I had to dedicate time and concentration to get good results on a daily basis.

    I trust that you have 1mg tablets to use so as to adjust your dosage.  Jumping up to 15mg seems too big to me, so I would test a 2mg increase the next time your pmr starts to flare.

    I have learned to adjust to my daily evening flare of symptoms, knowing that my split dosing will take care of it in time for bed.  If I get a "burning" flare of my hip or shoulder bursitis though, I will increase my dosage by 10-20% immediately, usually for just one day while I also adjust my diet to match a lower activity level.

  • Daniel1143
    Daniel1143 gilman

    Posted

    You've received some good advice. I resisted increasing my prednisone when I was at 5mg. Flaring began and I tried to gut it out until I could no longer bear it. Upped to 10 mg for one day then 7.5 for two days. Did the trick.
  • Anhaga
    Anhaga gilman

    Posted

    Some time ago someone said, and it's been repeated a few times, "It isn't slow if it works".  It's like a person who is looking at a long range project (say, qualifying to be a doctor)  and saying "Think how old I'll be before I'm done!"  But of course one will be the same age anyway.

     with or without the accomplishment.  You need what you need, but by the same token, no more than you need.  Has the pain built up a bit over the days?  If so, you are experiencing increasing inflammation and as the others have said, you must get on top of that asap.  If you experience the pain after a reduction and then it eases it is more likely to be pred withdrawal (so far that is what I've been getting), and a bit of patience, or pausing or slowing the taper should sort that.  Here again I post the grook by Piet Hein:

    T. T. T.

    Put up in a place

    where it's easy to see

    the cryptic admonishment

    T. T. T.

    When you feel how depressingly

    slowly you climb,

    it's well to remember that

    Things Take Time!

    • gilman
      gilman Anhaga

      Posted

      It is more that I become aware of soreness in my shoulder. Not really bad, but nagging. I might try a few more mg to see if that takes care of it. My Dr is great, allowing me to pretty much use pain as an indicator to adjust my dose.

      I know not to up it more than necessary but I was worried that I might be moving backwards regarding future tapering. Based on the input I am no longer as worried.

      This is all so new to me as I have been on prednisone for just two weeks.

      The advice on this forum is priceless.

      Thanks

    • Anhaga
      Anhaga gilman

      Posted

      When I started on pred last June I was so happy to be nearly instantly cured.  My doctor didn't tell me I wouldn't be cured.  I was sure I could taper off pred in three months,  Well. after tapering by 1 mg steps from 15 mg to 9 mg I spent a sleepless night on the Internet wondering if I could up my dose back to 10 without checking with my doctor, who was on vacation at the time, and I found this forum.  It has been an absolutely amazing support.  Being of an unconventional turn of mind I have branched out and done some alternative things, but at the base of everything is adherence to the dead slow and nearly stop protocol.  I know I'll get there eventually, wherever "there" is, but it will take years not months!  As for shoulder, I too have a wonky shoulder.  It seems to have replaced my sciatic hip, which barely registers any more.  Guess there just has to be some body part or other that hurts.  As long as the evil all body pain never returns....
    • EileenH
      EileenH gilman

      Posted

      If you have only been on pred for 2 weeks then I venture to suggest it is a bit early to be thinking of tapering. If you had been started on a high dose - 30mg perhaps - then yes, starting tapering after a week might be fair. However if you are at a 10mg dose then it is almost certainly too soon. 

      The usual starting dose is 15mg, sometimes 20mg, new recommendations are suggesting up to 25mg. Top experts keep their patients at 15mg for at least 4-6 weeks before starting the taper - first you have to get all the existing inflammation under control and that rarely happens overnight. Once the symptoms are stable and, if it applies for you, your blood markers are low and also stable, then you can start to reduce the daily dose with some confidence. Every morning the body sheds a new batch of cytokines, the inflammatory substances that cause the damage, and you are looking for the dose that will deal with them on a daily basis for the longer term, until the disease process burns out. That is the lowest dose that will give you the same result as that starting dose. 

      If you haven't emptied the bucket of existing inflammation then reducing your dose to below that will result in a speedy return of pain - just like a tap dripping into a full or less full bucket, the less water in there to start with the longer it will be before it overflows.

      In addition - did you mean "shoulder" rather than shoulders? If the discomfort is only in one shoulder then it is very likely it isn't the muscular aspect of PMR but more likely some bursitis - which can also affect both shoulders in PMR. It takes much longer to get that under control because the bursae have far less of a blood supply than the muscles, the level of pred getting to them is lower and so it takes much longer to reduce the inflammation. Steroid injections are recommended for bursitis and achieve a much quicker result and effectively a result with less pred overall

      Above all, beware of getting into yoyo pattern with your dose.  If you reduce too soon the inflammation will increase and you will end up going up - repeat that pattern and you will get into trouble in the long run.

      And I do hope neither you nor your doctor are under the impression that this is a short-term problem that can be solved with a short taper, curing you by neutralising the inflammation and stopping pred afterwards as is done in most scenarios where it is used. This is on-going inflammation - think of the starting dose as the spring-cleaning and the daily dose as the daily dusting to keep things spruce.

    • gilman
      gilman EileenH

      Posted

      Thanks, Eileen,

      I should have said shoulders, as the pain is bilateral, just more in my right than left. My ESR was the only blood work elevated (32) along with slight anemia that led my physician to PMR, and subsequent prescription of Prednisone,  My pain on prednisone is nearly non existent, and virtually gone at 15 mgs.  In fact, only the shoulders ache a bit if I only take 10 mg,, not any other body parts that did before the treatment began.  I will follow your advice and just up it for a few weeks before trying to taper the dose.

      i am realistic, based on what I have read, and don't expect to be at zero very soon, but was hoping to keep my dose as low as tolerable to make getting off easier.  I guess taking a slightly higher dose won,t be a major setback.

       

    • EileenH
      EileenH gilman

      Posted

      I honestly don't think keeping the dose low makes it easier to get off. In fact, some doctors are beginning to rethink - they reduced the recommended starting dose from nearer 30 to 15-20, and are now wondering whether that may not have been a mistake in that a higher dose "clears things out" better. There is a possibilty that pred DOES have an effect on the autoimmune disorder since it exerts its effect through neutrophils - and neutrophils have been found to be present in tissue in GCA. A few patients who have had PMR twice did better with their first episode than the second - and they had a higher dose first time round. It could be coincidence - but...

      As long as the autoimmune part is active you need what you need - it should be as low as possible and that's why you reduce slowly and in small steps to identify the optimum dose, but there is no virtue in trying to manage with a bit less and having pain. It is likely only to be maybe 1 or 2 mg different at most and reducing that much more isn't going to make a lot of difference. Perhaps a coupld of months longer to get to zero - compared with maybe 5 years of PMR (that's the average length of time, not the 2 so many doctors are convinced of).

      PS - try using your right arm less! I get more bicep discmfort in the right than the left - the mouse hand...

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