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I have learned a lot in past 18 months from you good people.

Posted , 9 users are following.

paul45653
paul45653

But now I'm in that familiar situation with the medical profession. I'm of the opinion that they have an unconcious tendancy to write you off after a certain age, and something else will "get" you anyway. So they do whatever will get you out of the office without a big argument. They do have a way with words. My appointment with the Rheumy went that way last Friday. A lovely woman but hell bent on going down down with the pred despite my description of pain and symptoms like when I was first seen for PMR. I am supposed t o be going down to 5 right now and I am doing it the DSAS method until I can make up my mind with advice about this being a genuine flare. I'm sure there are posts describing how to back up and how far to go for how long, but I would like to phrase my question in terms of it being a test. From 5mg up to what to really see if it is a flare of PMR or pred withdrawal. Also if as the Rheumy is trying to tell me it is OS, a nice place to blame anything not diagnosed by positive means. So, how much to go to from 5mg/day and for how long to see if most of the symptoms get definite improvement. If not, how fast to return to 5mg? I know this is a common trap we get into but perhaps the answers will be of help to some others fighting the same battle. I knew it would involve me for a long time.

Paul

 

0 likes, 15 replies

15 Replies

  • Anhaga
    Anhaga paul45653

    Posted

    Paul, if it is pred withdrawal the pain should not be serious, and it should ease in a couple of days.  Unless your adrenals are not kicking in quickly enough.  If the pain gets worse that's a pretty sure sign the inflammation is building up.  Either way you may need to pause your taper.  Others will be along with more expertise to advise on how much to increase the dose.  Those of us with medical caregivers who treat the symptoms rather than the numbers or some abstract goal are blessed.  

     

    • paul45653
      paul45653 Anhaga

      Posted

      I would have thought I'd suffer pains under those conditions as I came down from seven.
    • Bergey
      Bergey Anhaga

      Posted

      Amhaga, thanks for your response.  I have been dropping 2.5 mg once every 4 weeks.  At 5 mg Ifeel great with no Pednisone side effects and no pain since starting at 15 mg on 12/1/15.   This is my second trial of Prednisone.  When I finished the first in June,  I continued to feel great for a couple months then it came back.  Is the slow decrease in Prednisone supposed to decrease the Prednisone side affects on your body or does it improve the likelihood of no return of PMR?  My side affects of changing Pred doses are not too bad and only last a few days.
    • Anhaga
      Anhaga Bergey

      Posted

      Your polymyalgia is not cured by prednisone.  The inflammation is held in check, and that is what we all hope to achieve at the lowest dose of pred possible until the disease decides to go into remission - which usually happens within something like 2-5 years but everyone is different.  So the slow reduction does two things.  It keeps pred withdrawal symptoms very small, and it makes it easier to pinpoint the lowest dose which will keep pmr symptoms under control.  Pain returning right after a reduction is usually from pred withdrawal and will ease as the taper continues.  If it is caused by pmr the pain will start to get worse as the taper continues and you know then to go back to the dose where you were last comfortable and stay there for a while, a few weeks, whatever, before attempting the reduction again.  Drops of more than 10% make it almost impossible to tell the difference and you are likely to overshoot that ideal minimum dose and trigger a flare.  It seems to take a long time, but I think it's been proven time and time again that a successful taper to a low level results in a total lower lifetime dose of pred than faster reductions which more often than not end up with a relapse and a return to a higher dose for longer.
    • Bergey
      Bergey Anhaga

      Posted

      Anhaga, I have a great deal of trust in my Rheumatologist who is caring and takes his time to explain things.  Although he may have tried to explain the condition to me in the same way you just did,  your response helped me understand it more clearly. I appreciate your sharing your knowledge.
    • Anhaga
      Anhaga Bergey

      Posted

      Bergey, it makes a huge difference when we can trust our doctors, doesn't it?  confusedI really like my GP and she has been so reasonable when I ask her about things that trouble me, unlke a former doctor who I think thought I was just a hypochondriac old woman.  
  • Bergey
    Bergey paul45653

    Posted

    Paul, would you or one of the other contributors explain what the DSAS method is?
    • paul45653
      paul45653 Bergey

      Posted

      Berry,

      This is something I'm using for first time. It is the "Dead slow almost stop" method. I don't have the link at hand but it has been refered to many times. It involves easing in your new reduced dose about once in the first week or so with old dose the rest of the time then two days new rest of week old etc (rough explanation).

    • Anhaga
      Anhaga Bergey

      Posted

      I think it is available somewhere on this site, but if you google healthunlocked dead slow nearly stop you should find it.
  • sandra28555
    sandra28555 paul45653

    Posted

    I am positive they write you off after a certain age and I think that age is after Medicare. I get so worn out with the same old answers. They don't ever care what they give you as long as it shuts us up.
  • jo42444
    jo42444 paul45653

    Posted

    Hi Paul I have also had Pmr for 18 months and my rheumy was set on having me off pred in one year. Last November I cut .5 and was down to 2.5 mg but over about a month the pain just got worse. When it got to the point I couldnt sleep at night (58 and still working not good) I started to self dose and took some of the great advice from the members on this wonderful site. So I went back to 5mg for 2 weeks then cut it to 4mg Since Nov I have managed to get back to 3.5. I did it by taking 4mg for 6 days and3.5 for 1 day then gradually but very slowly increased the number of days I took the 3.5. It took longer this way but seems to be working for me i will start the same process next week to cut to 3mg over the next couple of months. Good luck Joanne

    • paul45653
      paul45653 jo42444

      Posted

      That sounds like the kind of personal experience I have been looking for. I'm really ready to try. Thank you Jo.
    • Anhaga
      Anhaga paul45653

      Posted

      I use the dead slow method.  Like all of these things, it can be tweaked to suit your own life, your own response to the meds.  I appear to have reduced successfully to 4 mg since starting this method last September when I was at 10 for the second time.  I had been wondering whether 4 was really going to work, but feeling much better today.  Have had the fatigue that comes with slow adrenal rebound, however, so have to wait a bit to make sure I'm not going too fast, even if pmr symptoms are controlled.  
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