15mg to 12.5mg taper advice please

[Oh-my]

After starting my PMR journey on 12.5mg of Prenisolone I had to move up to 15mg because of a flare where I have stayed on and off for 17 days (I attempted moving back down after 4 days).

Finding myself in a good place I wanted to drop back to 12.5mg again. Day 1 was fine. Day 2 stiffness was returning to my arms and legs. After a bad night, on Day 3 I pannicked and took 15mg.

I am new to tapering and how my body reacts. Today I took 12.5mg again knowing the stiffness will return. Do you think this is steroid withdrawal and I should tough it out for a few days to see? Or have I overshot my equilibrium point and need to stay above 12.5mg? Would love all your advice.

[DorsetLady PMRGCAuk volunteer]

This link explains the differences between steroid withdrawal and flare- and it’s mainly about the timings….

healthunlocked.com/pmrgcauk...

But as you haven’t had a very good start, I would suggest you return to 15mg [no point being at 12,5mg if you have issues, and your body won’t thank you for yo-yoing up and down].

Get stabilised at 15mg, then reduce by 1mg -ask for 1mg tablets..or cut your 2.5mg into half getting 1.25mg

[Oh-my in reply to DorsetLady]

Thank you DorsetLady. I'll stay on 15mg a bit longer and then try a smaller drop next time. I see the GP in 2 weeks time. It's been hard not having an imbetween appointment with her to assess where I am. I put myself up on 15mg initially. The only e-consult advice I got was stay on the 12.5mg which wasn't enough.

[SnazzyD]

I’m a big fan of reducing on a sliding scale rather than a jump even if it is a rapid slide, smooth it out with a few small reductions. To me it felt like my body was not being forced to deal with a bigger dose change as well as deciding if the flare is over. Perhaps it’s a load of clap trap but it felt better as my body hated the constant changing of the goal posts caused withdrawal reactions. Also, if you are needing a bit more than 12.5mg you might need 14mg or 13mg but won’t know if you are back up at 15mg. 0.5mg drops perhaps each week to find your level more accurately?

[Oh-my in reply to SnazzyD]

Thank you. I think I am definitely going to go for a sliding scale.

I am looking forward to dropping below 15mg just so I can be my calmer self and sleep better. I took 15mg yesterday and as a result of the buzz I get I did some, what I thought was, gentle gardening - perhaps not gentle enough as I'm feeling it today. I'm my own worst enemy. I have upped today's dose to 15mg and have got the pill cutter out for when I'm ready.

[DorsetLady PMRGCAuk volunteer in reply to Oh-my]

Gardening is a killer at the best of times -always manages to catch us out -starts gently -but then we think “I’ll just do this -won’t take a minute!” .. but it does!

[Sharitone]

!2.5mg is a low starting dose anyway. Like everyone else, I would stay on 15 for a bit, then reduce very slowly.

That dose of pred virtually stopped me sleeping at all. There is lot of advice online for help with sleeping, including the Sleep well ,with Michael Mosely BBC podcasts . However, nothing worked for me - it was like searchlights being turned on in my brain, and my dear GP gave me sleeping tablets. Nobody likes taking them, but they worked and it was bliss. There was no problem with dependency, as I reduced them with the pred. IT is very difficult for your body to heal itself when you do not sleep. Best wishes.

[Oh-my in reply to Sharitone]

Thank you. I'm a big fan of Michael Mosely - he advocates dark chocolate - what's not to like!

I haven't listened to the Sleep Well podcasts yet but I'm not surprised they haven't worked for chemically induced insomnia. What I really need is my long walks back again.... It's good to hear the sleeping tablets worked for you.