Goodbye pred, today, and thank you HealthUnlocked - PMRGCAuk

PMRGCAuk

20,342 members38,113 posts

Goodbye pred, today, and thank you HealthUnlocked

Joydeck profile image
17 Replies

Yesterday, I ended 4 long years on prednisolone. 😃

Diagnosed with PMR at 68 years-old, I was soon on a 24 mg split-dose of pred. After 9 months, I was stuck at 7 mg single-dose, even longer at 3 mg, and again at 1 mg. I'm lucky as I have few other health problems, was mostly without pain, and could exercise freely throughout.

I wish to thank forum members who so kindly assisted me and particularly those with vast knowledge and experience. So much so that I only needed a GP for scripts. Thank you HealthUnlocked.

Written by
Joydeck profile image
Joydeck
To view profiles and participate in discussions please or .
Read more about...
17 Replies
PMRpro profile image
PMRproAmbassador

Good luck - hope it stays away! But don't be in denial - it can be kept under wraps at 1mg, even 1/2mg, but zero is just a smidgeon too little!

Joydeck profile image
Joydeck in reply to PMRpro

Ah ha! Here's where HealthUnlocked and PMRpro shine.

From February, I was stranded for 5 months on 1 mg pred, unsure whether my bilateral shoulder pains were PMR or from excessive walking with hand-weights, during the COVID lock-downs (Melbourne holds the world record for lock-down days). I eventually learnt to use hand-weights more judiciously and my shoulders pains faded away.

Once painlessly below 1 mg, I was acutely aware of the risk of PMR returning at very low pred. So, I tapered cautiously, reducing by 0.1 mg every two weeks without the least pain. At just 0.1 mg pred, I reduced to 0.05 mg for 2 weeks, and to a mere 0.02 mg last week. Ultra cautious, don't you think? 😇

PMRpro profile image
PMRproAmbassador in reply to Joydeck

I think you get the prize for patience!!!! What did you do - count crumbs? ;)

Joydeck profile image
Joydeck in reply to PMRpro

Crumbs? For the past two years, I broke up dozens of 5 mg tablets (10 % pred) and sorted them by weight into a 14-compartment pill box. With a 1 mg precision scale, costing $12, I could weigh down to roughly 0.1 mg of pred. A flexible approach to tapering.

PMRpro profile image
PMRproAmbassador in reply to Joydeck

:)

123-go profile image
123-go in reply to Joydeck

Ultra talented, ultra steady-handed, ultra skilful!

MrsNails profile image
MrsNails

All The Very Best Joy 🥂🍾💐

Joydeck profile image
Joydeck in reply to MrsNails

No pred—or PMR— is some Christmas present! 🎄

Sharitone profile image
Sharitone

Thank you for your encouraging story!

Joydeck profile image
Joydeck in reply to Sharitone

What's more, my annual eye test last Monday showed no hint of glaucoma, macular degeneration or cataracts. 👁️

Recent blood test results were also excellent. I lost weight—I didn't need to lose—with un-diagnosed PMR and, in 4 years, regained half of it. ⚖️

Pred's not so bad after all. 🙂

Sharitone profile image
Sharitone in reply to Joydeck

I'll take your word for it!🥴

HeronNS profile image
HeronNS

A nice way to end the year and begin the next. 😊

fmkkm profile image
fmkkm

Congratulations!

123mossie profile image
123mossie

Congratulations & good wishes for the future. Hope it stays in remission.

Laineydee profile image
Laineydee

What an encouraging story to take us into the Christmas season. A reason for optimism for us all. Good luck and hope you remain pain/Pred-free.

Tiggy70 profile image
Tiggy70

Congratulations and all the best!

LCfan profile image
LCfan

Well done!

You may also like...

Thanks and a hopeful goodbye

comments and experiences. I got PMR in Oct. 2017, diagnosed and started Pred in Feb 2018, started...

Goodbye to prednisolone thanks to Leflunomide

increased the pred but was soon back to normal tapering. I am now completely off pred and only...

Pred and Calcium thanks!

Thanks everyone. Heaven preserve us from unspecific information. Heard about the Thyroxine...

Last pred today (I hope)

steroid infusion over three days and then high doses of pred, reducing to my final 1mg tablet...

Problems with tapering Pred

My doctors are great but this year they tried to rush me to reduce my Pred. I knew it was wrong and...