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making my mind up

Posted , 8 users are following.

pauline36422
pauline36422

i thought i was doing very well getting down to 1 mg,    for about  3 weeks  then  the pain  started again    tried to manage  for w hile  untill it got worse. so went up to 2 mg.   around  5  weeks ago,     then pain stedily   worsend.  till   yesterday went  to 3 mg.   but the question is.    instead of chaseing the pain,   by uping  the pred by 1 .to see if i can cope,   or do i go to  5/6   mg  then start to reduce  back at a later date.    so worrid of taking too much pred, i have  been on it for 3 years  

0 likes, 9 replies

9 Replies

  • EileenH
    EileenH pauline36422

    Posted

    Yes is the short answer. Go straight back to at least 5mg, since you have let it get away you might even need a bit more to get it under control. You can't "chase the pain" - you have to hit it hard, maybe even having a few days at 10mg, a few at 7.5mg and back to 5mg. That sort of reduction is OK providing the 5mg is still going to be enough. 

    Don't worry about taking too much pred - you were obviously OK at a very low dose - anything under 5mg is low and is less than your body makes naturally so the risk of side effects is also low. The risk you take when forcing a reduction and going too low is that you will need a big increase in dose to get it under control again - and bingo, you have ended up taking more than if you had stayed at maybe 5mg for a while.

    You also have to get your head around the idea of "I thought I was doing very well getting to 1mg" not being the aim. You want to keep the PMR at bay - not get to zero come what may. Once you try a dose and the pain comes back you need to go straight back to the dose that you were fine at. That's why we say don't reduce too often at this level - at least 2 months at any dose, preferably 3, once you are under 5mg. You need to be sure that the last dose wasn't just below the borderline where it managed the inflammation - it takes time to build up the inflammation to the level where you feel the effects.

    Hopefully what I've suggested will do the trick - and start today with taking the rest to give 5mg and see if it is enough to do the trick. If not - a short sharp blast will be needed. But you will be back to 5mg by next weekend and probably to 3 or 4 very soon afterwards. This is what you were looking for - the lowest dose that manages the symptoms. But don't be in a hurry to try below 3mg just yet! MrsO's wonderful rheumy likes his patients at 5mg for anything up to 9 months before reducing further - and it seems to work well.

    • constance.de
      constance.de EileenH

      Posted

      I was wondering about Mrs O's 5 mg for so long.  Do you think it was because she had GCA, or do you think it is better to do so with PMR too?
    • lodgerUK_NE
      lodgerUK_NE constance.de

      Posted

      MrsO also had PMR, she had both together, mainly because she was undiagnosed with PMR for a a long period of time and then GCA came along.

      Constance, can I be cheeky and ask how you were when you were diagnosed with PMR.

    • EileenH
      EileenH constance.de

      Posted

      It was partly because at this level your body has to start making its own corticosteroid, cortisol, again. It takes time for the whole set up to settle down and rushing things at this level has all sorts of problems. Your reductions are also high percentages of the current dose and it is likely that it will be here or hereabouts that the longer term maintenance dose will be found. Go too fast and you will miss that. I don't think it was anything to do with GCA or PMR - more the process of reduction of pred after a long time on it.

      Even when you stop taking pred it can take up to a year or more to be really back to normal because of your body having to adjust to it not being there. The adding in of the long time at 5mg also probably takes you further down the PMR road - it will go into remission sooner or later for most people but how long it will be can't be forecast. Being on pred for longer in this way may contribute to people having the smoother reduction after. I haven't explained what I mean very well - but 5mg is a low dose and probably doesn't cause much in the way of side-effects. Better a longer time there than rushing and having to go back to the higher doses to sort out a flare.

    • constance.de
      constance.de lodgerUK_NE

      Posted

      "Cheeky" - that's good coming from one of our experts.😄😄

      Had pains for about 2 months, decided to visit dr.  ESR 132, CPR 100+ (can't remember exact measurement)!  Dr said "I know exactly what it is, but we'll wait for blood results".  That was over 3 1/2 years ago.

      Very many ups and downs, mainly downs for over one year.  Although on pred (at first 40 mg) ESR and CRP kept going up!!!! Hospitalized, they put me up to 60 mg for a short time (I think they were thinking of GCA).  Down to 30 mg before leaving hospital.

      Thankfully, 10 months ago, I found this site and realized my end wasn't nigh!

      Thanks for your interest.

      Have a good and pleasant week. C.💐

    • constance.de
      constance.de EileenH

      Posted

      Think I'll stay at 5 mg for a while then.  Can't tell whether pain in hips and ankles is LORA or PMR!

      Great weather at the moment 24 - 26 degs.  Sunny, slight wind - great.

    • helen19544
      helen19544 EileenH

      Posted

      I agree with Eileen.  I have chased the pain many times and finally have settled on 5 mg for many years.  Your body produces prednisone and this amount keeps it at a level. I still have pain but have come to the conclusion that there is only so much control you have......live with the rest.  I am tired of expermenting with pain control.  Sometimes the side affects are not worth it.

      Tramadol was the most effective with 5 mg of prednisone then even 

      tramadol quit working. 

  • pam7653
    pam7653 pauline36422

    Posted

    My Rhumy made me start back at 15mg. I too had been down to 1mg after a year. So excited I might get off. By the time I got to 0mg it took a week and I the pain started in my hips. I argued with my Rhumy about going back to 15mg but finally broke and started. That was last summer 2014. I am currently on 5mg and doing well. I'm just staying there until I feel it's starting to fade away. Not sure when that will be. From what I was told you always decrease Prednizone, you don't increase it. Unless you do it 1 mg at a time in low doses like 1-5mg. Good luck
  • pauline36422
    pauline36422

    Posted

    thanks one and all.  you dont know how it reasuring  you all are ,  makes me feel

    much better when i read the reports,   but then again  you all will cos you have all been there  at some  time     thanks again xx

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