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PMR, Tapering the Prednisone

Posted , 7 users are following.

kathy67492
kathy67492

hello again...I have had difficulty signing I to the website...and I have really missed all of you! To review...I have had PMR since about last March...starting on 15 mg and have tapered down to 7.5 over time, but the last couple of months have been a roller coaster. I had that terrible rash (?) on my back...took varying doses of prednisone to get rid of it, over the course of a month. The rash is gone. I am on 10 mg of Pred daily. On Oct. 15 I tried to taper to 9. It was a disaster. After 3 days I was feeling badly...and fatigued. 6 days later my Dr. Told me to go back to 10...but it took a week for me to feel better...and actually I now awake every morning in pain, looking for the prednisone! I know you all have warned about tapering too quickly and/or too soon! Now I am afraid to taper at all! How do you know when to try again?

sorry to be so lengthy...appreciate any comments or advice. Thank You!

0 likes, 33 replies

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  • linda17563
    linda17563 kathy67492

    Posted

    I drop 0.5mg every six weeks...my doctor agrees with this, because otherwise I`m in too much pain...I started on 15mg, I`m now down to 5.5mg....first few days a bit tough, but determination gets me past that....it works!
    • EileenH
      EileenH linda17563

      Posted

      Remember that now that 0.5mg is becoming a large proportion of the total dose and will become larger as you continue the reduction. That is the reason the reduction schemes we talk about were devised. The first one was by a Swedish gentleman called Ragnar whose story is on the PMRGCAUK northeast support group site. He could NOT get below 5mg (I think, may have been 3mg) without pain and worked out a pattern of taking the new dose one day with the old dose for some days inbetween, decreasing the total dose over several days very slowly. Using this pattern he got to zero - and founded Club Zero over on the forumup forum.

      Your doctor is to be commended for their attitude - too many insist on the patients doing it their way.

    • linda17563
      linda17563 EileenH

      Posted

      Other doctors in my practice and Rheumatologist were not so understanding...but my lovely lady doctor is!  She`s the one that has seen me in the pain mostly.  (i`ve had Fibromyalgia 20 years) and then developed Polymyalgia...so she knew I had lots of pain to deal with.  Thanks for the info of Club Zero I will look into that....  I did come off once too quickly (how the hospital wanted me to) but pain returned with a vengence, in fact it did n`t really go away!  Doctor`s need to recognise this...it`s our pain not theirs!
    • EileenH
      EileenH linda17563

      Posted

      On one of the other forums there was a post recently from a lady doctor. A lady doctor who used to try to get her PMR patients to come off pred asap - presumably not believing their descriptions of their pain. Now karma has hit - she has PMR. And now asks whether forcing your patient to go from, say, 8mg where they are comfortable to 7mg where they are not, is going to contribute much in the scheme of the total overall dose that is so scaring to any inexperienced or non-thinking doctor. 

      Obviously your lovely lady doctor also understands the difference between fibromyalgia and polymyalgia - we need to have clones made of her...

  • linda17563
    linda17563 kathy67492

    Posted

      Eileen  and anyone else trying to come down on seroids....I just thought I would let you know, that for all my slow tapering of steroid....0.5mg every 6 weeks, I hit the brick wall...big time.  Pain fatigue ect.  I am now going to follow your instructions for lowering the dose...although I was surprised it affected me this way after being on the 5.5mg for 3 weeks, before this happened......fingers crossed.....
    • EileenH
      EileenH linda17563

      Posted

      This may be your "maintenance dose" - again, however slowly you take a reduction there will be a point where your pred dose is only equal to your inflammation level. As long as the underlying autoimmune disorder is active it will cause inflammation which will cause pain and stiffness. Below that dose - PMR symptoms will return. 

      And now you are down to where your body is having to wake up and make cortisol for itself too. Have a rest at 6mg until you feel really well.

  • linda17563
    linda17563 kathy67492

    Posted

    Thank you for that I will rest at 6mg.....what I forgot to mention last time was, I also had three bad dizzy spells and nearly fainted, wasn`t sure if this was related to coming down on dosage, but saw somewhere that it can happen......who would know something could be so tricky to master, and present such problems!
    • EileenH
      EileenH linda17563

      Posted

      Several doctors like to keep patients at 5mg for some months before reducing any further just to let the body catch up. It may be you need just a bit more - we are all very different. 

      And never forget that having PMR doesn't excuse us from any other illness we might fall prey to normally - and if you aren't well for some other reason then it isn't a good idea to reduce at any dose but in this sort of region where you are at the borderlines of cortisol production being taken up by the body again then any stress can be too much. It isn't a race - more haste, less speed. 

      "who would know something could be so tricky to master, and present such problems" - don't worry, it doesn't seem to occur to a lot of doctors either!!!

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