down to 1mg

[olde]

I just want to briefly share my experience with PMR.I was diagnosed after self diagnosis about one and a half years ago and after trying for months to get cured by 'natural' methods decided to take steroids.I was of course reluctant and got down from the initial 15mg to about 5mg in a matter of weeks. I have since been down to 1mg and even lower for the last few months and occasionally have a day without to see if I've recovered! But no unfortunately not. I guess I am luckier than many with this awful disease at least so far although of course who knows what will happen as it takes it's course. I felt I should share these details just to add them into the mix and help provide the widest possible picture.

[Ljm12345]

Thank you

[Rose54]

Hi

Well done

Our experiences of this illness are all different and I believe difference degree's of the effect it has on us .

Best Wishes for your continued improvement

[Hidden]

I'm happy to hear that although you have the disease, it sounds like you have been able to manage it fairly easily. You went from 15mg to 5 mg in a matter of weeks? Good on you! I'd love to be at 1 mg, but will be happy if I can keep reducing (have gone from 80 mg down to 40 mg in 7 months) and NOT have a flare... As Rose54 said, we all experience different degrees/levels of the disease(s) and it impacts us differently.

Keep up the good work and enjoy the views of Morecambe Bay!

[Jackoh]

As you say everyone different. PMR just the umbrella term. Do hope you continue on successfully. Thanks for your input.

[TooSore]

I am told that you can safely stay at the low levels for as long as you need to. You might want to stop and let your body rest at your current dose for a bit. For some it's at 10mg, me it was at 3mg. Then proceed with the taper very slowly. By going slowly you also can start to figure out if the dose is too low (a flare) or if it's just your body complaining about the lower dose. (Prednisone withdrawal symptoms) You've done very well so far to be as low as you are in so short a time. Now the trick is to finish reducing without going up and down like a yoyo which is may make things more difficult. It's so nice to hear positive stories. Good luck on the rest of your journey.

[pollyg263]

hi olde . do you have any pain at all, even a little i am down to 2mg have been for 2 month. but have bilateral pain in shoulders. cannot make my mind up wether its old age 76. or pmr. so i dare not reduce any more xx

[olde in reply to pollyg263]

Hi Polly, I do get some slight pain and stiffness in shoulders and if driving for hours pelvic area/legs can stiffen up a bit.However even when I first took the steroids I was say 80% better and I am at least that now. An alternative therapist did say -'you should never stop taking the steroids' but in that case how do we know if we really still need them? However at present I think I do and am continuing at 1mg a day.As with many people I really didn't want to start on the steroid path and that is why I reduced as quickly as I could which many seem to advise against.As someone just replied to me - this condition is an umbrella term and appears to affect us all differently at least to some extent.