Zero Pred

[Yealink]

Hello lovely people, I have been on zero pred for the last 3 weeks no problems for a little while, but now the pains are starting to emerge, legs and upper arms. Having never been on zero pred in the past how do I 'increase' pred? I have been taking paracetomol which helps a little but then the pains come back. I very slowly tapered to 0.5mg and then stopped.

I would be grateful for some help please, thank you.

[DorsetLady PMRGCAuk volunteer]

I'd be inclined to go back to 1mg per day to get things fully under control. Then reduce to 0.5mg as per one of the slower tapers I sent to you in your previous post a couple of months ago.

and then, when you feel happy from 0.5mg to zero using same procedure.

There really is no rush, and you can extend each particular plan to as long as takes.

[Yealink in reply to DorsetLady]

Thank you so much, I’m definitely not in a hurry to get to zero. I will follow your slow taper, I’m quite happy staying at 1mg for as long as it takes.

Many thanks again.

[Charlie1boy in reply to Yealink]

Hi,

Just for your information, it took me three goes to get to zero.

First time in October 2020, when I stayed at zero for 11 days, before reverting to 5mg, and then tapering down again. That was five and a half years into pmr.

Second time in May 2021, when I stayed at zero for 108 days. Then I restarted at 3mg.

Finally, and third time lucky, I went to zero on 1st October 2022, and have stayed there ever since. It was over a year from my second attempt to the third one!

Yes - it is a very slow process; at least it was for me, and requires lots and lots of patience. Hopefully, you will get there before too long.

Good luck.

[Yealink in reply to Charlie1boy]

Well done! And thank you for sharing this, I’ll take it all on board. Maybe second time lucky. I’m in no hurry to stop, it is what it is!!

[Exflex in reply to Yealink]

I would suggest that you reduce from 1mg in 0.25mg steps, and stay at each reduced dose for a couple of months.

[PMRpro Ambassador]

As you have found, even 1/2mg can keep the inflammation under control. If only doctors believed it too!

You have realised quickly - just going back to 1mg may be plenty. If not a couple of days of a bit more should do the trick, The next tapers, slower and really extended and the final one to zero - use zero as your new dose, don't just cold turkey even 1/2mg.

All the best!

[Yealink in reply to PMRpro]

Thank you so much. I think my GP wants me off them as I have yet another med review this week! As I said to her it’s not up to me, PMR makes the decisions!

Best wishes

[PMRpro Ambassador in reply to Yealink]

And any GP who objects to longterm use of 1mg that keeps you stable is in need of a reality check!

[Gimme in reply to Yealink]

My GP said exactly that to me, that even if I and the docs want me off the pred, be aware that my body might have other ideas.