How long between DSNS attempts

[Storm-boy]

hi Everyone and HNY. I’ve had PMG for 18 months now. In the last 6 months I have been trying to get the pred down. Have tried twice to get below 7.5 on the DSNS but have flared. Back to 7.5. When do you think I should try again. How long should I leave between attempts.

thanks everyone

[DorsetLady PMRGCAuk volunteer]

see you managed a reduction from 8-7mg a couple of months ago, but did mention a few twinges……and this was my advice -

Certainly reducing by. 0.5mg from now on would be a good idea - but maybe not immediately. If you had a few twinges on last taper perhaps staying at 7mg for a few weeks would be sensible, PMR and adrenal wise.

So how come you are at 7.5mg?…and did you try reducing whilst you still had some niggles…not a good idea as that’s usually a sign there’s something amiss.

Make sure you are really painfree before you consider reducing…and only you know when that is.

Adrenal stuttering may be making it a bit more difficult as well - see this -

healthunlocked.com/pmrgcauk...

[Storm-boy in reply to DorsetLady]

Yes I got to 7 but after a couple of weeks twinges started to return so felt 7.5 was probably right for me. Feel absolutely great at 7.5. Will try to to reduce by .5 in a few weeks

Thank you so much xx

[PMRpro Ambassador]

When you "fail" a couple of times at the same dose it is a sign you have reached the target: the lowest effective dose. However slowly you taper you won't get past that until the underlying disease process has reduced a bit further,

I think when you get there it is worth settling at that dose for at least a few months before trying the next 1/2mg. Things in PMR tend not to change overnight so you can enjoy a rest from the stress of tapering and concentrate on other things.

[Storm-boy in reply to PMRpro]

Thank you so much once again PMRpro

[pata63]

I was started on 20mg for PMR on 13-Apr-19 and tapered down to 5mg without incident. I was on 5mg from 16-Oct-19 and tried to taper to 4.5mg starting 30-Dec-20. I wasn't successful as I started having my old PMR symptoms after a month. So back to 5mg where I stayed for a long time, with a few sick day exceptions. Starting 26-Oct-22 I started again on a DSNS taper to 4.5 and this time I'm doing well. So I'm starting 2023 off on 4.5mg. Thanks to the excellent advice from  DorsetLady and  PMRpro and others I think I'm finally getting the hang of what is a flare, what is too low a dose, and what is my adrenals stuttering. Thanks all. 🙏

[Storm-boy in reply to pata63]

Oh. Thank you. I don’t know where I’d be without the wonderful people on this forum