Patiently tapering

[iblue]

Hello from California,

Just wanted to share my current tapering story with you all, with the hope that it will be helpful. This group has been so very supportive with understanding that our bodies are all different and adrenal gland function is unique to each individual. I also greatly appreciated comparing our inflammation accumulation as a bucket that fills to the point where we have a flare up and cannot remedy it without increasing our Prednisone.

I have listened very closely to how my body responds to a taper even now at 1.5 mg. What is working for me may not work for someone else. I do still have tapering symptoms and don’t ignore them even though I have been told by doctors--at that low dose I should just stop taking it. Believe me I want to, but my body is in charge, as those of us who have struggled with PMR and balancing our Prednisone dose know!

So here’s the method that’s working for me, and bar any other health issues I should be able to allow my body to take over without prednisone. I introduce the new lower dose 1 day during the week, say Sunday. See how my body responds to it for a week, then sit with that until I feel it is handling the 1x a week reduction. Then I pick another day not too close, such as Wednesday and introduce the second lower dose, for a 2x a week reduction. I continue this tapering process with lots of patience as my body adjusts.

My adrenal glands cannot be rushed and I had been listening to everyone else but them over the years. The greatest stroke of luck was finally finding a Rheumatologist that looked out for problems monitoring my progress all the while praising and supporting my ability to listen to my own body. Trust is so crucial to the doctor/patient relationship. Thank you all for your stories and insights into this journey!

[DorsetLady PMRGCAuk volunteer]

Good to hear you are managing your tapering well… but we do despair when we hear doctors say you should just stop at low doses..

[SnazzyD]

Spot on

[PMRpro Ambassador]

This idea that you can just stop at a low dose "because it can't be doing anything" just makes me want to cry - it is so stupid ...

[iblue]

It’s a one size fits all belief that permeates healthcare and is so arrogant and ignorant!

[Miserere]

Thank you for posting such a positive way to taper. Listening to your own symptoms and your own body is, without doubt, the way to go.

[Groggrim]

Thank you for this post. I have been trying to taper too quickly and need to take back control.

[Pollygoat]

Thank you for your post Iblue. I am following DorsetLadys advice which is similar to your tapering schedule. Up and at them this morning so far so good. Thank goodness February has arrived. It was a long January here in Ireland

[byebyebicycle]

Thanks for sharing your experience. It seems to me you've got a good system for tapering which I will definitely bear in mind when I get down to low mg/day. I'm now going from 9 to 8.5 with the DL 5 week slow taper from 12.5mg. I had previously stalled at 10mg three times doing it the 15->12.5->10mg in 4 weekly steps. In the middle of most of the slow taper steps I get a wobble and think I'm going too fast but carry on and then things get better and I see the taper out OK. I hope I find the wisdom if the wobble gets too big to pause the taper and take stock 🤔

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

I hope I find the wisdom if the wobble gets too big to pause the taper and take stock 🤔

well you are aware it could happen, so that’s a long way towards it! 😊

[byebyebicycle in reply to DorsetLady]

You are of course correct. Right now in the middle of a slow taper 9 to 8.5 I feel worse than I've felt for many months. I'll give it another week and if this stays like this I will pause. I'm in no real pain just much more ache and unsteadiness on my feet. So maybe I'll just go to 9 for a month and take it from there. thanks.

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

I feel worse than I've felt for many months

In that case maybe either repeat last week/stage or return to 9mg and give it a few weeks before you try again. Little point in ploughing through if things aren’t working. .. it’s likely to get worse rather than better. And winter is a very trying time to taper anyway..

[PMRpro Ambassador in reply to byebyebicycle]

And I agree with everything DL has said!!!!

[byebyebicycle]

I'm going to give it another week on this taper and see how I feel. As I wrote I've had a wobble in the last 3 tapers and they came good. If things don't improve I'll return to 9 for a few weeks. thanks for the help.