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Advice about Decreasing Pred Dose

Posted , 8 users are following.

bob73443
bob73443

Hi all,

I've been on 12.5 mg of prednisone for 6 weeks (15 mg for 6 weeks before that), and it's time to decrease to 10 mg according to all the advice I've read on this forum.

However, in the past few days I'm feeling pretty raw, especially in the mornings and especially in my upper thorax regions.  Painful to even breath deeply.  By noon, the pain is usually gone (at least 75%).  I'd say that my condition has been slowly drifting to this state over the 6 weeks -- not getting better but very slowly worse (especially in the AM).

So here's my question:  should I simply go down to the 10 MG a day, or should I continue at the 12.5 MG?

In general, I don't know how to handle these reductions.  Should I (we) go by the book, or go by the body (feelings)?

Thanks for all your help (all of you).  By far the best such group I've ever joined.

0 likes, 29 replies

29 Replies

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  • Whisper2003
    Whisper2003 bob73443

    Posted

    I was diagnosed and put on prednisolone in Feb 14. Soon after starting to reduce I had exactly the same pain in chest area as you making it difficult to inhale in the morning (and difficult to get up!). It is better now but still troubles me. I am not sure if it is PMR pain or withdrawal pain.
    • bob73443
      bob73443 Whisper2003

      Posted

      Just out of curiosity, can you link your pain to any exercising you might have done or can you only link it to reducing the prednisone?
    • EileenH
      EileenH bob73443

      Posted

      For me exercise pain is just like any stiff/sore muscles you get when you've really had a hard work out or did a mountain walk - except it happened after going for a longer walk around town than usual with maybe a gentle slope! Or after climbing 3 flights of stairs instead of one. And it takes far longer to go away. 
  • Whisper2003
    Whisper2003 bob73443

    Posted

    Exercise pain is extra and usually elsewhere, though may add to rib pain. It just gets worse for each reduction! 
    • EileenH
      EileenH Whisper2003

      Posted

      I'd ask a physio about that rib pain - it sounds like a nerve is maybe being pinched by tight muscles in your back due to myofascial pain syndrome. That is relieved at higher pred doses but not at lower ones.
    • Whisper2003
      Whisper2003 EileenH

      Posted

      Thank you Eileen. Does myofascial pain appear only in morning like PMR?
    • EileenH
      EileenH Whisper2003

      Posted

      Not really - the spasmed muscles are there all the time and it is more associated with particular actions that put more load on those muscles until they get so tight the pain is there a lot of the time - though it is worse in response to an action. Though if the pred dose is high enough to offer some relief the pain is likely to be worse in the morning just before the new day's dose of pred kicks in.
    • Whisper2003
      Whisper2003 EileenH

      Posted

      I am reducing on your wonderful slow scheme from 11 to 10 mg and now I have reached 1 day old, 2 days new dose the pain in ribs and sternum have eased off! I will see what happens when I start the 9 mg.
    • bob73443
      bob73443 Whisper2003

      Posted

      Whisper,

      I am experiencing rather severe levels of sternum and rib pain also.  I just went from 12.5 to 10 mg on November 1, and the pain has gotten more severe in just a few days.  I know that Eileeen has been pushing us to consider myofascia pain syndrome and have to admit she has me thinking.

      But on the other hand, the pain is only in the AM and goes away after I take the pred dosage -- in about 3.5 hours.

      What I am afraid of is THINKING that I have PMR and HOPING that it will go away in 1-5 years, but then realizing later that is was not PMR after all and I've been taking all this Pred for nothing.

      On the other hand, the neck, shoulder, and hamstring symptoms that were so severe disappeared within 12 hours of taking the initial prednisone dosages a few months ago.

      Oh well, life doesn't always give us definite answers does it.

    • EileenH
      EileenH Whisper2003

      Posted

      Could well be then that you are VERY sensitive to reducing the dose. I know that even with taking the new dose for one day at a time at the beginning I feel "strange" for the first 3 or 4 days I take the new dose. Then it seems to settle down again. At the point of going from 4 to 3 I developed sore biceps - whether that was associated with the 25% reduction this is now or whether I'd carried too many heavy bags I have no idea! I retreated to 4mg where I am fine - must have another go...
    • EileenH
      EileenH bob73443

      Posted

      Eileen also pushes to NOT reduce from 12.5mg to 10mg overnight! I know that is what Quick and Kirwan use but for many patients it is far too big a drop to do from one day to the next. That's why I developed my "dead slow and nearly stop" reduction scheme. Using that and having had other problems like myofascial pain syndrome sorted fairly aggressively I have been able to get to 4mg rather than the 9mg that had been the sticking point before. 

      That sort of response to pred is reasonably confirmatory of PMR - provided you weren't started on 25 or 30mg which might improve other things. My improvement in symptoms came in 6 hours - stiff as a board and crawling up the stairs on hands and knees at 10am and walking down and then up perfectly normally at 4.30pm. On 15mg. I wasn't pain-free, never have been and the improvement went on for months, but it was very obvious in a few days.

    • bob73443
      bob73443 EileenH

      Posted

      Eileen,

      Now I AM totally confused.

      I thought your reduction scheme was:

      15 mg for 6 weeks, then:

      12.5 mg for 6 weeks, then:

      10 mg for a year, and then very slowly from there.

      What have I missed?

    • EileenH
      EileenH bob73443

      Posted

      That is the reduction that Quick and Kirwan use in their paper "Our approach to the diagnosis and management of PMR and GCA".

      However, for some people, including me, the 2.5mg drops they suggest at the beginning are too much and I devised the "Dead slow and nearly stop" approach.

      If you follow this link and then look at posts 4 and 5 in the thread (it is the same one as the Quick and Kirwan paper, just later posts) you will find my reduction plan which smoothes that drop and an explanation of the thinking behind it.

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      Sorry - I know I have mentioned it to you earlier but perhaps not in enough detail. And I did say a few days ago not to reduce when you weren't well!!!!!!!!! I've just looked at the start of this thread ;-)

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