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just been diagnosed with. pmg

Posted , 16 users are following.

mutley2
mutley2

hi. im andy have started tretment of 15 prednisolone 5 days ago havent had any reduction  in pain so far how long does it take to take affect.it probably varies but would appreciate your experience thanks

1 like, 50 replies

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  • snapperblue
    snapperblue mutley2

    Posted

    Hi, Andy!  I'll just reinforce what others have said about some individuals needing more than the textbook level of 15 mg at first.  In 5 days on 15 mg,   I received only about 10% reduction in pain (I no longer yelped out loud whenever I moved), but it took 20mg to get the pain under any semblance of control. At 25mg I had good control.  

    Don't worry that I higher initial dose will keep you on prednisone longer.  After 16 months, I am down to 6 mg, which I think is an average-to-good rate of reducing, and have been essentially painfree the whole time. (That is, I always take enough pred to stay pain free and control the inflamation.)  

    Would I have been able to reduce faster if I had taken a lower dose at first, putting up with more pain? Impossible to say, since PMR varies so much. It is even possible that taking enough prednisone to control the inflamation, has improved my ability to reduce the dose.  No one knows!  

    Best of luck- may you breeze through PMR with the ease that doctors seem to think is typical!

    • EileenH
      EileenH snapperblue

      Posted

      Interestingly - I read an article from the top PMR bunnies in the world the other day, who seem to be tending back to the concept that a higher starting dose actually leads to a better reduction/relapse figures afterwards. There were people on the forums who have had it twice, were on a higher dose first time round and had a far easier journey. 

      I have this suspicion that for some people at least that may be the case - because they also commented they think there may be various versions of PMR. Now if some of us have a single episode of the inflammation which, if it is stamped on quickly, goes away: are these the ones for whom PMR only lasts their quoted 2 years? Is that why there are these 3 identified groups in the 2-year, 5-year and the rest camps? Which is bad news for me after 12 years, 6 on pred I suppose. But last time I had a flare I had a short period of quite high pred dosage - and was able to reduce steadily afterwards. Was that coincidence?

    • Elijo
      Elijo EileenH

      Posted

      My MD started me on 40mg. end of October for one month, then reduce to 30mg.  In Feb. I was at 20mg, am now tapering more and just today 10mg. for the rest of the month.  Then alternate 10 & 5 for 2 wks, then 5mg.  Since I started the pred. end of Oct. I have had no recurrances or flares, so  I'm definitely inclined to agree with the concept of a higher starting dose.   Sorry you have been dealing with this for 12 yiears, not fun!
    • EileenH
      EileenH Elijo

      Posted

      But higher starting dose or no t- those reductions are FAR to large. Top US experts recommended years ago that no reduction should be more than 10% of the current dose. When you are still well above the maintenance dose you can manage them - but below 10mg it becomes far more critical. Much of the problem with rapid reductions using big steps is that some people are very sensitive to the change in dose and develop "steroid withdrawal rheumatism" which is so similar to the PMR you can't tell if it is a flare or not.The small steps help reduce that risk too - many people say it takes them anything up to a week or more to get used to a new dose, the slow reduction helps with that.
    • ptolemy
      ptolemy EileenH

      Posted

      I am not a top bunny, but I have a theory that the longer it takes to diagnose PMR before taking steroids the longer the journey afterwards. This is just my theory and could be rubbish!
    • EileenH
      EileenH ptolemy

      Posted

      You weren't diagnosed for a long time either were you? I wonder how much longer I've got then...
    • ptolemy
      ptolemy EileenH

      Posted

      No I wasn't, mind you I could be totally wrong. I am sure it must have some relevance though. 
  • Elijo
    Elijo mutley2

    Posted

    I started end of October 2015.  I found relief by the end of first day, no recurrances, am now down to 10mg. and continue tapering.  Guess I'm lucky!  Hope you feel better, maybe you need a higher dose to start.
    • Elijo
      Elijo

      Posted

      I'm going to titrate my doses myself now that I'm getting lower.  I don't see my MD until end of June anyway, unless I have a problem.  I want to avoid all flare and any problems.  Thanks Eileen.
  • Oregonjohn-UK
    Oregonjohn-UK mutley2

    Posted

    Add my two pennies worth mutley2.  Started at a higher dose of 30 mg for 6 days back in July 2014, relief after 4/5 hours also felt 80% better.  Then I reduced down quite quickly over a 5/6 week period - down to 15 mg.  Have never reduced more than 10% since (other than from 15 to 12 mg), this using the very slow method (1 day new, 6 days old, 2 days new and 5 old etc.) then waiting around a week to see if I was stable.  Now at 20 months and am on 2.5 mg.  No flares, but still get the occasional shoulder pain and neck ache which fades as the day goes on.  Have increased my activity (even bought a fitness watch!) to help to improve my muscles wastage.  I walk several miles per day - rain or shine - and cycle into the nearby town.

    I only took AA for 3 weeks and stopped after consulting with my GP.  Also stopped taking Omeprazole, a few months ago, after I was below 8 mg.   Other than Calcium/D3 no other meds. for PMR.

    As an aside – my BP meds were reduced by half a year ago after 15 years on amlodipine at 10 mg?  I no longer use my inhalers (Qvar (brown) and Ventolin (blue)) for asthma after being on them for 40 plus years, so there is some good about being on preds!!

  • jancorb
    jancorb mutley2

    Posted

    Hi, I'm on day one. Began my preds this morning taking 15mg.

    Already some improvement on my pelvic girdle.

    Good luck with your recovery.

    Jan

    • ptolemy
      ptolemy jancorb

      Posted

      Give it another day and you won't know yourself!
  • Anhaga
    Anhaga mutley2

    Posted

    I'd say if NO reduction in pain the diagnosis might be questionable.  How are you now?  
  • mutley2
    mutley2

    Posted

     Hi just a update im on day 10 of taking 15mg of pred i think ive had obout 50% improvement in reduction in stiffness/ pain i phoned the rumy nurse helpline on day 7 asking if l should increase dose she said the rumys notes says i should wait for two weeks before any change.The main pain remaining is in shoulders id say ive had about 20% improvement in that area,l feel l need to go up to 20 pred.I would be interested in any  experience you have  of splitting the daily dose l read on this forum someone taking two doses one on waking and one at about 2pm with the idea of having a more level relief over 24hrs? ps keep positive cheers andy    
    • maid_mariane
      maid_mariane mutley2

      Posted

      Hi there

      I take my morning dose as errly as 5am to 630am and take an afternoon dose at 3pm of 5mg.

      Im now at 17mg daily so 12mg am and 5 pm. Works for me and alot of orhers howevwr initially to get the pain under control i went from 15mg to 20mg wirhin rhe fiest week.

      Hope this helps. Mariane

    • EileenH
      EileenH mutley2

      Posted

      It is felt that the best effect is gained from taking the dose all in one, once a day. You really need to get the existing inflammation under control before fiddling about with splitting the dose so I would think at present is a bit early to be doing that. It is possible the shoulder pain is bursitis and that will take much longer than the muscle problems to resolve - the blood supply to the joint is poor and the pred just diffuses into the joint fluid so is at a much lower level than in blood. It took a few months for bursitis to fade for me. Sometimes a local injection of steroid helps better and faster but that is something to discuss with your doctor maybe.

      The earlier in the morning that you take your daily dose, the less it has to do to manage the inflammation as it has had less time to establish - inflammatory substances are shed in the body on a daily basis. Many people wake early, like maid mariane, take the pred and settle down for a bit longer to let it work. That might be worth trying first.

      Andy suggests to me you're a bloke - are you large or small? Larger people often need a larger dose to get a good result.

    • diana21296
      diana21296 mutley2

      Posted

      I split my dose, 10mg at 5am when I always wake up. I then go back to sleep and get up at 8am when the dose has kicked in.  Then 5mg at 5pm and this keep me more or less pain free.  I take a small bowl of natural yoghurt before I take the pills to line the stomach. Good Luck!
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