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....just curious

Posted , 15 users are following.

lynda62707
lynda62707

As I've told you all, due to my own ignorance (and stubbornness!), I kinda screwed things up in the beginning of this journey by wanting to be on prednisone for a short of time as was possible. The bottom line to all my and my doc's poor decisions was that I had to start from square one only at a higher dosage 16.5mg instead of the original 15mg! My question is, is 16.5 considered to be a high dosage of prednisone? It seems most of what I'm reading from you folks is you all seem to be under 10mg. All answers accepted! Lol

0 likes, 21 replies

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  • susan43406
    susan43406 lynda62707

    Posted

    It’s not a high dose to start with. Some people need to start on 20 or more. You need what you need and the dose will come down in time. Try not to worry. You can’t rush it as you know. 
  • Anhaga
    Anhaga lynda62707

    Posted

    We may be below 10 because we've been on pred for months and tapering slowly.  Let me repeat:

    s  l   o   w   l   y .     

    Hardly anyone is started at 10 and they often have to increase anyway.

  • Twopies
    Twopies lynda62707

    Posted

    I started at 20.   2 years later I’m at 7 for oh, about the third time.  I use dsns and sometimes still have to increase a little. 
  • ptolemy
    ptolemy lynda62707

    Posted

    I started at 20mg and after three weeks my rheumatologist got to me reduce to 15mg. DISASTER! 
  • anne28129
    anne28129 lynda62707

    Posted

    Hi

    I started on 40mg last November after being diagnosed with PMR  and GCA.  I too am cutting the dose slowly and don’t think I’ll be steroid free for some time.

    Don’t rush anything, listen to your body and talk to your doctor and rheumatologist regularly 

  • MariGrace
    MariGrace lynda62707

    Posted

    Don't know if my first post went through. If it did - I'm sorry. My computer went wacky.

    For PMR, my family doctor started with 20.  When I reached the rheumatologist, he went to 60 and I reduced from there.  Have been back and forth after reaching 10.  Am nearing the 18th month and both my rheumatologist and his awesome APN have said I'm likely to never get off.  I'm not going to take that as gospel, but judging by my health at 10, things are not looking good.  My body now has so many other issues and it isn't liking any of them.

    Hugs... take care and listen to your body.  My doctor keeps telling me that a flare after reduction that is too fast is apt to go back to the beginning.  Nobody wants that. I can hardly cope with the thought.

    MariGrace

  • charles92035
    charles92035 lynda62707

    Posted

    lynda62707,

    I started at 60mg of Prednisone but I have GCA and PMR and after 2.5 years I am at 5mg. I hope this helps.

  • peggy_56092
    peggy_56092 lynda62707

    Posted

    I started at 15 mgs 2 1/2 yrs ago and after a couple of flares, am at 9 mgs.
  • MR._BELLA
    MR._BELLA lynda62707

    Posted

    I started at 20 went to 15 in 4 weeks then had to go to 30 for 2 weeks to get pain under control. Now I am at 17 and going slow slow slow to get to 15. I learned my lesson, go slow slow slow.
  • nick67069
    nick67069 lynda62707

    Posted

    Recommended starting dose for PMR is between 15 and 25, so you are on the low end of the range. Pred is not a cure, but only manages inflammation. What it means is that how much pred you need  depends entirely from underlying PMR activity. Think of PMR as an ocean with ebbs and flows, ever changing. When the water is high, you need more pred. Over time, hopefully, PMR weakens and goes in remmision, and you can reduce dose to zero. But think of it as marathon, not a 100 meter dash. Average, is as you know 5-6 years. Patients and listening to your body is of utmost importance.
    • MR._BELLA
      MR._BELLA nick67069

      Posted

      Does it last longer in women or men, or is about the same?
    • nick67069
      nick67069 MR._BELLA

      Posted

      it appears that way based on what I read on this forum, but I don't know of any official research confirming that man go into remission sooner then woman.

    • EileenH
      EileenH MR._BELLA

      Posted

      It seems to be almost a totally different disorder for men - they often need lower doses of pred despite being larger and are more likely to be off pred in 2 to 3 years. They often are able to do more too - but that could be because they have a greater muscle mass in the first place. There are exceptions of course.
    • MR._BELLA
      MR._BELLA EileenH

      Posted

      I have had PMR for 1 year a d there are times I have hurt so bad it was difficult to rule over in bed. There have also been times I have used a walking stick to help me walk because of pain. I think my biggest problem with PMR is I had been sick with cancer and heart attack for one year before PMR and I had lost all my muscle. But, I know one thing that has to be done, reduce Prednisone slowly.
    • EileenH
      EileenH MR._BELLA

      Posted

      I remember the not being able to turn over in bed - best part of 5 years of planning the action: "Bend knee, one foot here, push with the other, oooh - nearly half way..."!!! Then I couldn't do anything for the next 15 mins...

    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      I cannot sleep in my bed, I'm still sleeping on my American comfort armchair since February 2018. I still find it difficult to rise from the bed.. I have to go to the bathroom a couple of times during the night. 

      I have dreadful pains in my right  shoulder, radiating to my collar bone and  and above my right breast.  My oncologist put the pains down to the fibro sarcoma, which I had removed with MOHs. Surgery. 

      Prednisone has not helped these pains, but otherwise it has helped the neck, arms, hips  and leg pains. 

      I'm down from 25mg to now 14 mg. 

      I bought myself a small very lightweight four wheel samsonite trolley, which I find excellent if I go outside to the local shopping centre / mall..

      It's good, as I just wheel it along side me, no dragging. It has the tall handle, which folds inside , so it's easy to put in the car. I can put my shopping inside and rest my handbag on the top whilst I walk. 

      I feel sturdy walking and it's easy to maneuver....much easier that the traditional two wheeled bag trolley. 

      I'm 75 years young

      Try not to complain too much, if at all 😀

      Started the pmr journey 9/12 months  ago

      Stated taking Prednisone in March. 2018

      Keeping positive thoughts. It helps. ??

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