Last dose yesterday ?

After two years, of being diagnosed with PMR, starting on 30mg of Prednisone, on a sliding scale, and three months with few complications, I am now free of steroids as of today. Will it last, like everyone, I have no idea, it's a great relief to have had such a smooth transition, and a huge fear that this horrible disease will rear it's ugly painful head again. I have honestly, after the first two/three months, just got on with life and all it's thrown at me, whether I have cracked it, or it comes back to crack me again, remains to be seen. Will keep you informed, and thank you.

21 Replies

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  • Do come in and post anytime, Shania. We all like good news and everyone wants to hear success stories as they do give some hope, particularly to the newly diagnosed patients.

    I do hope you have a completely PMR-free life from now on.

    Best Wishes and take care.

  • I will polkadotcom, and thank you.

  • Bravo Shania and long may it last!!

    Good luck to you

  • Thank you mrsmop, we can only hope I believe, nothing is guaranteed with this sneaky little devil which came to haunt us all.

  • Well done Shania,

    you have done so well! Do keep posting now and again - if you've cracked it, that gives hope to us all. I dropped to 6.5mg today for the 2nd time in 3 years of battling, but you give me hope.

    All the best,

    Pats.

  • Thank you pats, we shall have to see what the next few day's and weeks hold, fingers crossed.

  • I'm so happy for you Shania and it gives me hope when I know that you have got over it in only 2 years.

    Best wishes for the future.

  • I am determined by nature Badgergirl, but this almost finished me off. Don't want to go back there, but feel our options are really not ours to make. Thank you, and good luck, everyone, we all need it for sure.

  • It does seem that something many of us PMR sufferers have is determination by nature! I sometimes wonder if it is our personality type - always busy, perfectionists, doing too much - that predominantly falls prey to this nasty disease! Perhaps our own cortisol becomes depleted as in adrenal fatigue prior to the onset. Just a thought.

  • You might be right there, Badgergirl. In 13 years I have never met a couch potato with PMR. We are always the ones who 'coped', who managed to be Superwoman and Wondergirl combined. I've often thought that PMR is specially designed to be a lesson to us!

  • I have to agree with you Badgergirl, I am a type A personality with all it entails, and anything short of perfection in my life was unheard of. Perhaps there is much in what you say, I suffered horribly with hyperthyroidism about twenty years ago, but am also over that now.

  • My thoughts for sometime Badgergirl,......just imagine us all together ,the competition to speak,would exhaust us!!!!!!! Funny??????Soo.

  • Haha! Yes, but at least we'd get things done!

  • Well done! This was so heartening to read, to know there IS light at the end of the tunnel. I was diagnosed with PMR in November 2012. I started at 20mg, gradually reducing down. Around June last year, my GP (I have always been GP managed) suggested reducing by 1mg a month. All has been well, with no return of pain (only ever experienced pain in shoulders and arms). However, 12th December I was down to 1mg. I noticed a gradual return of pain/stiffness (very bizarrely, only my right arm though). Come 12th January, instead of stopping completely, I was taking 1mg every other day. But today, the pain in my right shoulder/arm is quite bad, so I had a telephonic consultation with my GP who has suggested I revert to 1mg a day for the next 3 months and see how I go, saying if it's no better in a month's time to speak to him. In between diagnosis and the present day, my original diagnosing GP retired in September last year. The GP who has taken over believes in a much slower and longer reduction in dosage - saying PMR is such a difficult thing to diagnose/treat and every medic is different in their approach. So here I go - instead of coming off completely, I am starting on the Prednisolone path again. Maybe one day, I will be able to stop completely.

  • pjsmum, I was on 1mg of Prednisone for three months before I finally kicked the habit ! The most horrible time was between reducing from 2mg to 1mg, quite severe pain back for a week or so. However, I was determined to see if I could produce my own hormone and persevered for about two weeks when the pain disappeared again. It's only the second day today, I can feel my body asking me to give it a dose of steroid, but will keep going yet again for a couple of weeks and see if I might overcome it .

  • Hello Shania - thank you so much for your comments. It was extremely helpful and encouraging. I wish you good health.

  • Sounds really good, Shania. I hope you continue and have no reason to take the prednisone any longer. good luck. and wishing you good health. all the best, Whittlesey

  • Good to hear your news, Shania. I've had a wee setback this month, but fully intend to join you in being free of this wretched condition.

  • Good luck with your reduction Annodomini. x

  • Good to hear you have managed to reduce to zero. I am currently experiencing a flare up and have gone up a little to see if it goes away. Did you do this at all or just put up with pain on the way down? I was doing so well reducing until this was down to 5mg and managing to do aqua aerobics Pilates and yoga etc. my 2yr mark is April !

  • H suzieh, after initially being so relieved at finally having a diagnosis and being given steroids, as previously stated, initially on 30mg, I have gradually lowered the dose in very easy stages. I did have some symptoms of stiffness and pain after about three days of reduction, but after that, it seemed to balance itself again. I never had to resort to having to increase my dose again. Today is the fourth day without steroids, and so far so good. Will keep you posted. Perhaps I have been one of the lucky ones. Only time will tell. So sorry to hear of your flare up though.

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