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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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  • EileenH
    EileenH bob73443

    Posted

    I'd say use my reduction scheme (but I would wouldn't i ;-)  ) 

    Do you think this could be a chest infection? Bear in mind that if you have bronchitis the pred will reduce the inflammation - so having taken it in the early morning it will take a bit of time to soothe the inflammation and that would fit with feeling worst in the morning and then improving as the pred kicks in. 

    We always say to not reduce if you are unwell, wait until you are better. And I would suggest you check in with your doctor - just in case it is a bronchitis that needs an antibiotic. Pred does make some people more prone to infections - doesn't affect me but I do know lots of people who get cold after cold.

    If you haven't seen it before, my reduction scheme is in posts 4 and 5 of this thread:

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

  • bob73443
    bob73443

    Posted

    I was diagnosed 12 weeks ago, but have been suffering since February of 2014.
  • manymany
    manymany bob73443

    Posted

    APPARENTLY WHEN ON PREDNISOLONE IT SHOULD ONLY BE REDUCED I WAS TOLD BY MY RHEUMATOLOGIST VERY CAREFULLY AND BLOOD TESTS NEED TO BE CARRIED OUT. INITIALLY MY SITUATION WAS NOT HANDLED CORRECTLY UNTIL I WAS TRANSFERRED BACK TO GUY'S HOSPITAL. PRIOR TO THAT I WAS UPPED THEN DOWN ON THE DRUG. IT REALLY MESSED WITH ME BADLY. I ALSO SUFFERED MANY INFECTIONS ONE AFTER THE OTHER. HOPEFULLY NOW THAT I AM BEING MONITORED MORE CAREFULLY I WILL EVEN OUT. I THINK YOU NEED TO BE CHECKED OUT AS EILEEN H SUGGESTED AS I HAD MANY CHEST INFECTIONS AMONG OTHERS. LET US KNOW HOW YOU GET ON.
  • bob73443
    bob73443

    Posted

    Anna, Eileen and all,

    Yes, I have made an appointment iwth the doc since I'm scheduled to be out of town again for a few weeks.  We'll see what he says.

    However, my PMR has been a bit atypical right from the start.  It started FAST (typical), from shuolders, neck, and then thigh muscles.  Then it went just as quickly into my rib cage -- so much so that i could not turn in bed without moaning.

    The rib cage pain is the pain that's returning -- although now it's in the back instead of my sternum.

    We'll see.

    Thanks for all your help.

    • EileenH
      EileenH bob73443

      Posted

      Bob - myofascial pain syndrome can also stem from trigger points on either side of the spine at about lower rib level. The referred pain from it shoots round into the ribs at the front as well. That might be worth pursuing with a physio maybe. Or with whatever Bowen therapy is called in the USA...
    • bob73443
      bob73443 EileenH

      Posted

      Eileen,

      Yes, I have heard of that and researched it a bit myself.  Interesting thing is that it came suddenly, and also goes suddenly with the prednisone -- it seems to fit the bill for PMR, aside from its weird location.

      As an aside, I visited my doc today and I do not have any infection (bronchitis), 

      But he was very interested in the link that you've posted in the past -- the ones that talked about prednisone treatment plans.  Would you be able to repost the links?

      Also, are these links permanently posted somewhere here on the forum?

      Thanks Eileen

    • MrsO-UK_Surrey
      MrsO-UK_Surrey bob73443

      Posted

      Bob, it obviously didn't like me quoting the link.  Try clicking on polymyalgia rheumatica and giant cell arteritis in red at the top of this page, and you will find all the links there.
    • erika59785
      erika59785 bob73443

      Posted

      Yes, PMR inflammations  m o v e  from area to different areas of the body. and  so far I have experienced shoulder, neck, thigh muscle pain within the last year and right now lower back pelvic/girdle pain, especially on one side which makes it difficult for me to walk.  Dreadful!

      I feel for you!

    • EileenH
      EileenH bob73443

      Posted

      If you look at the first post I put up on this thread you will see the link in red at the bottom - it contains all the other links so we can post them any time we want without it having to be moderated.

      Click on the red print in that post - the thread that comes up has a post with the final link being to the paper by Quick and Kirwan and in later posts you find my reduction plan. 

      Or as MrsO has said, go to the top of this page and click on the red printed "Polymyalgia and giant cell arteritis" and it will take you to the same list of threads, it is the first one.

      Myofascial pain trigger points also respond somewhat to higher doses of pred - they are concentrated areas of cytokines, the same inflammatory substances that cause the pain and stiffness in PMR. If you are just on the borderline of the muscle going into spasm it will come and go.

    • EileenH
      EileenH erika59785

      Posted

      Can you just clarify for me Erika - did you have those pains all at the same time and on both sides or did you have a period with shoulder pain, then one with neck pain, then thigh pain?
    • erika59785
      erika59785 EileenH

      Posted

      No, not all at the same time.  It started out more than a year ago with a period of neck pain on both sides when I received physical therapy which helped. Then months later a period with thigh pain on both thighs when physical therapy and 10 mg of Prednisone helped for my RA.

      Then months later the shoulder pain first starting on my right arm, then moving to my left arm signaled a diagnoses by my GP that I have PMR.  The shoulder pain on my right arm was worse than the one on my left.  At that time the girdl/pelvic pain was only noticable on standing up from a seated position. I did not know that this was another symptom of PMR, but this got worse until now. 

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