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Pred doseages

Posted , 11 users are following.

BLADEBOY
BLADEBOY

Hi,

diagnosed 6/2014 and placed om 15mg tapered down each week. Seems this was too quick as when I got down to 3mg the pain erupted. Went ont  15mg start and 1mg reduction every 8 weeks. Down to 1mg and I was hoping I could rid myself of it. Nope, pain and stifness back with a vengeance. Doc told me to go back to 5mg and see what happens until next appointment  in 2 weeks time. Doesn't appear to have made a lot of difference after 3 days like before. Is this a normal way and should I ask to go to a Rheumatology Dept.

Thx

0 likes, 15 replies

15 Replies

  • EileenH
    EileenH BLADEBOY

    Posted

    Your GP seems to have got himself in a knot! No - he seems to be learning but it would have better if you hadn't been the experimental rat! Mind you - it may notbe his fault.

    If you let a flare in it it is often more difficult to get the symptoms under control again. There is also the problem that you don't know if this is a flare from reducing too far or because the disease process has become more active. Since you were reducing slowly I'd suspect it is the latter. That will mean you may need a higher dose to manage it.

    If it were me I would try a few days of 10mg and if that works reduce to 7.5mg and see if that still works - you will know quickly if it does. Then resume your slow reduction. It is hard to know where you will land - but I appreciate neither you nor your doctor want to increase the dose too much. I had a flare last year that meant I had to go from 5mg where I had been fine for months to 15mg to get the symptoms under control. It was a few months before I managed to get to 12mg without the symptoms returning. Now I am back to 6mg - not without a few hiccups but I got there. Better that than allowing a major flare.

    • Oregonjohn-UK
      Oregonjohn-UK EileenH

      Posted

      Glad you are back to near where you were Eileen. If anyone needed patience it's you after the time you have had PMR!

  • jean12178
    jean12178 BLADEBOY

    Posted

    Go to rheumatology......they are more informed
    • linda17563
      linda17563 jean12178

      Posted

      Sorry, but can`t agree with that unfortunately!  If only they were....many of us wouldn`t be in the situation we are now....
    • daniel08939
      daniel08939 jean12178

      Posted

      My Rummies make believe that PMR is a rare disease and are reluctant to diagnose.
    • EileenH
      EileenH daniel08939

      Posted

      When in fact it is the most common vasculitis in over 60s. Less common over the entire population perhaps but more common than GCA.
    • Michdonn
      Michdonn daniel08939

      Posted

      It is how much they think they know, when in fact they know very little. In a short time we will be far more than they do! I spend several hours each day reading and studying all I can on PMR. When my rheumy. Told to be at 25mg and I was on 30, she gave me hell. Sorry I was following what my body was telling me. She changed her tact stay on 30 for 7 more days and try 27 1/2, to which I agreed.
  • Oregonjohn-UK
    Oregonjohn-UK BLADEBOY

    Posted

    Bladeboy - I can understand your frustration after 3 years but it's not a race to zero it's 'knowing' when the underlining 'problem' has gone into remission. Go back to the dose that you were last comfortable at and stay there until you are ready to reduce again, perhaps at an even slower rate?  I used a phrase 'reading your own body' and not relentlessly reducing over the same time scale.  Remember the Tortoise and the Hare?

    I started at 30mg and after a few ups and downs finally reached 0mg after 2.5 years - so best of luck, John

     

  • Michdonn
    Michdonn BLADEBOY

    Posted

    Bladeboy,. Started on 20mg came down slowly to 7. At 7 mg flare up. Then up to 10, then 15, then 20, then 30 mg, finally relief. Hoping to start tapering down the end of next week. It appears that each individual is different

  • BLADEBOY
    BLADEBOY

    Posted

    Thx for your answers, all logical and helpful.
  • robert33625
    robert33625 BLADEBOY

    Posted

    I related my experience a few months ago where my doctor put me on 50 mg/day for 5 days. He said this would reset my imune system while avoding the problem you and others are having getting off prednisone caused by using it for more than a weeh resulting in shutting down your natural production.

    All responders were skeptical of this non standard treatment but it worked. Within a month my pain was pretty well gone and as long as I do a t least a little aerobic exercize I have almost no pain and am leading a pretty normal life for an 83 year old. I wish more doctors were aware of this approach. Hope you recover soon from your treatment.

    • Michdonn
      Michdonn robert33625

      Posted

      This does sound very interesting I wonder if anyone else has use it? I also wonder what he called this approach. Do you think you could contact him and let us know. That would be great everything that I have read, says the short approach is the way to go. Thanks
    • EileenH
      EileenH Michdonn

      Posted

      It is far more likely that what it is is not the form of PMR we discuss. There are plenty of people I know who have had short courses of 50mg/day and still had long histories of PMR. It is not the getting off pred because of the adrenal function that poses the problem - that isn't a factor until below 10mg - it is the return of the symptoms due to the underlying autoimmune disorder that is the problem. 

      "everything that I have read, says the short approach is the way to go" - I have no idea where you have read that - it is something I have rarely come across and I have read much of the reliable medical literature.

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