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How do YOU decide whether and how much to change your dosage?

Posted , 23 users are following.

philoso4
philoso4

Ultimately each of us makes the final decision about changing or not changing our dosage of prednisone. I want to learn how YOU decide.

For example, do you tolerate stiffness so long as it doesn't cause "too much" pain when getting out of bed? Or do you take enough prednisone that there is NO pain associated with standing up off the toilet?

What do you consider to be symptoms of "too much" prednisone?

Do you base your decision on laboratory measures in any way? 

Or do you simply follow your physician's orders?

6 likes, 80 replies

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  • bob73443
    bob73443 philoso4

    Posted

    What a great question!

    For me, it's a combination of 2 things.  First, it's my pain levels.  Secondly, it's the quarterly blood test results.

    The largest problem I have is at night, or I should say early morning.  From 2:00 AM onwards, my back and ribs start hurting.  I'm currently at 8 mg and will not go lower because I fear I won't be able to sleep.  I've tried Tramadol at night, and that helped a little bit, but not enough to continue taking it long term.

    I'm certainly not pain free during the day, but I'd say I'm at 80% of normal during the day.  Again, it's the night-time that keeps me from lowering even more.  I've even split my dosage between AM and PM -- 5 mg in the AM and 3 in the PM but that doesn't help too much for the nighttime discomfort.

    When I do extra work (outside yardwork, for example), the pain level during the day increases a lot.  I tried lowering to 7 mg during a few weeks ago but when right back up to 8 because of daytime pain.

    I forget my blood test results right now, but they're much lower than before I started the prednisone 15 months ago, and are trending lower.

    Bottom-line -- for me it's primarily the pain levels that hint that I can either increase or decrease.

    Again, great question.

    • philoso4
      philoso4 bob73443

      Posted

      Thanks, all. Your thoughtful responses are very helpful for me. 
    • judy20492
      judy20492 bob73443

      Posted

      Bob, try taking 3 mg of Pred in the morning, and 5 mg in the evening, That might help you with the nightly pain.  I will probably take a week for you to see  difference.

       

    • kathy67492
      kathy67492 bob73443

      Posted

      Was wondering how long you have had PMR. I seem to be stuck on getting lower on the prednisone rather than dealing with the pain, like it's a cold test!😊
  • julian.
    julian. philoso4

    Posted

    diagnosed 19 months ago. I tolerate a little stiffness in upper legs and upper arms. Some twinges of pain in upper arms. Pred side effects mood swings, pred brain, short term memory. Still a little bit noticeable at 4.5mg/day - just sensitive I guess. Stomach tolerable. Activity declined over time due to fatigue. Pacing and pottering. 5km walk draining. Recent coronary stent provides new lease on life, I'm enjoying the rehab exercise. Rough the following day but ok the next. pmr stiffness still ok. So far so good. I didn't have any symptoms of heart problems so difficult to unravel all that's happening. But a lot more energy than I've had for a while.
    • philoso4
      philoso4 julian.

      Posted

      Thanks, all. Your thoughtful responses are very helpful for me. 
  • suesing
    suesing philoso4

    Posted

    As I am now in the process of getting down to 3.5mg, my Rheumatologist is happy for me to go slowly and follow my own instincts about this. I am now being monitored every 3 months as well and any symptoms either possibly related to PMR or not, are all being treated holistically and with an open mind.  It's taken a long time to get here!!

    When reducing, I seem to get some stiffening and pain, but nothing like it was when I was first diagnosed.  After about 3 - 4 weeks this reduces again.  The worst thing for me is the headaches and total fatigue that I get when I start to reduce, which again goes on for about 4 weeks before I stabilize again.  If it's too bad to tolerate, or I have a heavy day to deal with, I stay at the old dosage. Eventually I feel good on the lower dose and stay there for about 5 - 6 weeks before slowly beginning the next 1/2mg reduction.

    As long as my inflammation stays right down, I will continue on this path.

    • philoso4
      philoso4 suesing

      Posted

      Thanks, all. Your thoughtful responses are very helpful for me. 
  • Anhaga
    Anhaga philoso4

    Posted

    So far I've followed the dead slow method.  Oddly enough when I was tapering from each level down to the next I began to find that I felt BETTER on the day of the lower dose, which I take is a really good sign.  Not finding that yet with getting to 8 mg, but no untoward symptoms either.  I know I will have to be more careful at the next step and still trying to decide whether I should switch to the 6 day starting cycle, or just try to reduce by .5.  I will base my decision on how I feel after being at 8 for more than a week.  I have no idea what my inflammatory markers are.
    • EileenH
      EileenH Anhaga

      Posted

      That's interesting Anhaga - I was beginning to wonder if I imagined that I felt better on the low day. It takes about 3 days where I feel strange (for want of a better word) a couple of days were I think, OK, and then suddenly I feel better on that day. I'm sure it is logical!
    • ptolemy
      ptolemy Anhaga

      Posted

      Anhaga I noticed that too and just ignored the fact that I felt better on the lower dose, perhaps I was not imagining it!
    • philoso4
      philoso4 Anhaga

      Posted

      Thanks, Anhaga. When you say "I felt BETTER on the day ..." do you mean a general feeling of well-being, or rather less stiffness and pain or both?
    • Anhaga
      Anhaga philoso4

      Posted

      Less stiffness I guess, I hadn't really put my finger on anything else but I'll pay more attention now....  I know that after I started to taper off pred I became aware of negative changes in my body and feeling of wellbeing that seemed unrelated to PMR directly, so I have attributed that to the pred itself as its side effects begin to work their insidious way into my system.  It is very subtle.  If I can put it in terms that the mothers amongst us can understand it is somewhat like that day you wake up and know you are pregnant, but you have not yet experienced any real symptoms.  There is a very subtle difference in your experience of your body.  The lower dose of pred, before any of the pain of PMR starts to creep back, is also a bit like that.  Very hard to describe, just a subtle feeling of difference, a positive difference, feeling a little more like yourSELF, if that makes any sense.
    • EileenH
      EileenH philoso4

      Posted

      In my case it is wellbeing - my body notices the lack of its full fix of pred and I feel, well, strange. Then that strangeness stops and I don't notice a different between higher and lower dose days. Then I start to feel better on the low days. 
    • philoso4
      philoso4 Anhaga

      Posted

      Thanks for trying to explain. I agree that there a lot of subtleties involved. I think you have done a good job of describing something very difficult to describe,
    • Padada
      Padada Anhaga

      Posted

      Anhaga,  thank you for mentioning that when you are on a lower dose of prednisone, you feel 'more like yourSELF'.  That is it!  Prednisone makes me feel like I am NOT myself.  Almost like I am someone else who is watching myself.  (I hope that doesn't sound crazy).  It is good to know that I am not the only one that is effected this way from the prednisone. 

       

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