Now down to 2.5mg pred

[Mikeysaab]

I was diagnosed in December 2018 with PMR. It’s been a bumpy journey but thankfully just over 18 months in I’m down to 2.5mg. Currently I’m symptom free and don’t want to count any chickens but feel I can continue the reduction. I wanted to ask others experience of tapering at very low levels and any advice in how to do it please? Thanks all- this has been an amazing forum over the past year and a half.

[Yellowbluebell]

Hi, I think the single most important suggestion now is go very very slow. No point in rushing at this point. How much are you tapering each time.? Obviously a decrease if 0.5 is the smallest you can take but how long you do each dose for is important. Any sign of pain and you need to stop and assess. Dont go on regardless. Others will along with their suggestions later. Good luck and keep us up to date on how you get onx YBB

[SnazzyD]

At this level I did 0.5mg per 10-14 weeks or thereabouts using the DSNS plan then holding at the new level until I felt adrenally ok. I found some reductions easier than others.

[SheffieldJane]

You are giving your Adrenal function a chance to recover at this stage so tiny 0.5mg spaced drops are in order. I would even take 4 weeks to do these drops. I would also be alert for any sign of Adrenal deficiency such as excessive fatigue, stomach pain, dizziness, nausea. It is all looking very good though isn’t it?

[DorsetLady PMRGCAuk volunteer]

Hi

I did 0.5mg a time following my tapering plan, it went okay, but I have a feeling my GCA was in remission by then anyway.

But as others have said, for a variety of reasons, SLOWLY is the key.

Good luck

[PMRpro Ambassador]

As slowly as you possibly can!!!! You have done so well so far - don't spoil it now.

DL mentions her GCA was probably in remission by then but it isn't just "Is the PMR still there?", it is also whether your adrenal function is perking up too - and that still takes up to a year to get back to being reliably once you are off pred altogether.

[tangocharlie]

My own thoughts are that we are living in stressful times at the moment and as stress influences inflammation and I wouldn't try and reduce anything right now. At such a low dose why rush, give your adrenals time to bounce back too

[HeronNS]

I was at a similar dose in a similar timeframe. However it has taken me a total of five years to taper from 15 to zero - only just achieved so proof it's successful still in the future. I tried numerous times to taper further and kept having to go back up, just a little, then settle back around 2-2.5 again. Finally, last spring I thought I would try something different and used the dead slow nearly stop method, as I had all along, but went through every step twice. Hence it took twelve weeks to drop by .5 mg. It has taken me A WHOLE YEAR to taper from 2 to zero, and even going that slowly there were times I was afraid I was making a mistake. It likely won't take most people who are ready this long to taper those final mg, but it seems to have been the way I had to go.

[Mikeysaab]

Thank you everyone and everything you say about taking it slow makes sense. I’m a typical male and want to ‘fix it now ‘ lol! I spoke to my doc who also said don’t go too fast and undo all the good progress. Thanks all

[yogabonnie]

I did NOT go slowly enough. I was so excited to be at 2.5 I stayed only a week or two then to 2 then dipped to 1.5 and up to 2 and stayed there while the flare took hold until I felt like I did the day I found out 3 years earlier I had PMR> VERY discouraging. I am now at 7 and will slowly taper down. GO SLOWLY. I know some have done DSNS 2 times for each .5 under two. might be a good idea in these stressful times!!!!! Good luck to you. don't wait if it starts to hurt as you drop. I waited too long I think .

[Hollyseden in reply to yogabonnie]

Sorry to read about your flare. I seem to have been on and around 3 for so long but with what I'm reading on here, things could be worse. I am now trying 2.5 once a week with 3 all the other days. How slow can I go? At a low dose, as advised by the experts here, I am not doing much harm so I'm now content to plod slowly along. Hope your taper is successful, no matter how slow 🌼

[Mikeysaab]

Thanks yogabunnie