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Help Eileen please!!

Posted , 16 users are following.

jane03457
jane03457

Eileen, in the past when I had a flare & had been on 5mg for some time you advised me to up to 10mg for a few days & then reduce. This worked perfectly thank you & I have been happy on 5 for some time now so attempted the slow reduction method to reach 4.5mg this was going well for about 6 weeks & then bang, the flare began so I gingerly increased the dose by 1mg a day & have been on 8 for a few days but still not good.

I guess I should have done as you suggested before, hit it hard & then reduce?

So....what do you suggest I do now Eileen? I just want to be without pain & reduce back to 5 where my body seems to be happy & perhaps accept that after 10 years of PMR it is not going to leave me!!

As ever I truly appreciate your help & eagerly await your reply. You are so helpful to so many, thank you,

Jane

0 likes, 7 replies

7 Replies

  • Michdonn
    Michdonn jane03457

    Posted

    Hi Jane, I would wait for EileenH to respond. When I have had a flare and did not hit it hard I chased it, big mistake. The last few flares, hit them hard till I got relief. I split my doses so I bump up in am, not enough bump up PM dose. So far that has worked for me, I stay on that dosage till I am PMR pain free, then reduce to the high dose in my DSNS schedule, in gradual steps.

    Sorry to hear of the problem in PMR journey. Try and stay active, positive and try to smile. ☺️

  • EileenH
    EileenH jane03457

    Posted

    I think you have answered your question for yourself! Honestly - increasing mg by mg rarely works, you just waste time and the inflammation builds up a bit further making it harder to get back to stable.I think you probably will have to accept that 5mg is the lowest you are going to get - but it is a low dose and not doing much if any damage:

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    I know how you feel - 14 years into PMR, 9 years into pred and it is still there and flares every so often. But I have heard of people who have got off pred after 11, 12 or even more years. I have been up to 15mg for a flare and got back to 7 or 8mg. Now I have just had the next episode - managing at 9 or 10mg at present but I'm not confident that will last. The herald symptoms have changed a bit - but the PMR does catch up eventually. It is quite bizarre at times.

    • sandy08116
      sandy08116 EileenH

      Posted

      Jeez! Didn't realise it lasts that long. Sorry to hear you've had another flare. How naive of me to think you have a diagnosis, take the pills and get over it. 

      Keep well.

    • jane03457
      jane03457 EileenH

      Posted

      Thanks Eileen, you are right of course, stupid me trying to do my own thing!!

      So Eileen do you what mg do you suggest I go to? I'm on 8, last time you recommended 10 for a few days & then reduced back  to 5 which worked, but this time I have increased slowly from 5-8 & still in pain so shall I go to 10 again for a few days & then reduce as before.

      I definately will not repeat my method! Thanks again Eileen & sorry to bother you,

      Jane

    • EileenH
      EileenH sandy08116

      Posted

      In about 5% of patients PMR lasts for life - but 75% are off pred within about 6 years. Luck of the draw.
    • EileenH
      EileenH jane03457

      Posted

      No bother at all - I think you have to start with adding 5mg to where the flare started and see how that goes. So 10mg and work from there. If it istill isn't enough to get good pain relief you might have to add a bit more. If it is - stay there for a week and then you could try dropping back down. You shouldn't need to taper after just a week. But I wouldn't go straight back to where you flared, 6mg first maybe, Just be sure this isn't a real flare as opposed to having gone too low. And don't feel despondent if the 6mg isn't enough even after clearing out the accumulated inflammation - you need what you need these are low doses and aren't doing any damage.

  • Mrs_Hobbles
    Mrs_Hobbles jane03457

    Posted

    So sorry you've been hit with a flare! At this stage, having followed it to 8mgs with no effect, I feel even 10mgs now wouldn't really work but you could go to 15mgs for 5 days and then drop straight back to 8mgs and reduce from there. My tipping point was trying for 3.5mgs, won't be trying that for along time again! Hope you can get it under control soon xxx

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