Pred - splitting the dose?

[Mandyq]

Hi all

Sorry this is quite convoluted, but as ever I’d be really grateful for any advice or suggestions.

I was diagnosed with PMR in 2022. Started on 15mg Pred slowly tapered to my current dose 5.5 per day.

GPs Initial advice was to split the dose, 10mg in the morning and 5mg in the evening. So far I’ve stuck roughly to this “formula” as I’ve tapered - so when I got to 6mg I took 4 in the morning and 2 in the evening. That worked well.

At 5.5mg I’ve been taking 5mg in the morning and 0.5 in the evening. However at this dose (3 weeks) I feel really rough when I wake up. A bit of a “hangover” feeling, slight nausea, bit of a headache, fuzzy eyes, generally a bit groggy. This passes about an hour after I’ve taken the 5mg of Pred. I’m then fine for the rest of the day and evening. I’m wondering if 0.5mg in the evening is not enough to get me through the night until my morning tablet of 5mg kicks in

So here’s my question. Would I be better sticking to my original regime of splitting the dose between morning and evening? Would this work for my next step when I drop to 5. (eg taking 4 +1)

It may be that this is to be expected as you taper down to lower numbers - in which case I’ll just learn to live with it, as will other half who’s faced with a bear with a sore head in the morning🤣

Hope this makes sense. Whilst GP is supportive she’s not got the 1st hand experience thats offered by helpful contributors to this site. I know I’d have really struggled without your help.

Thank you all.

Mandyq

[dmart7]

You are doing pretty well, and at 5.5 per day your symptoms are almost certainly adrenal (rather than PMR). As you suspect, this is to be expected and endured if you can. Everyone is different, but these symptoms would probably have arisen whether or not you continued to split the dose. As you get to the lower doses - 5 and below - it might be better to minimise or eliminate the evening dose, as you will then more closely mimic the natural adrenal/cortisol process, which hopefully is waking up. So that would mean taking your whole dose in the morning or in the early hours. But you are doing well so don't make changes if you don't want to! And taper the dose nice and slowly. Good luck

[Mandyq in reply to dmart7]

Morning dmart

Thank you for the speedy response - getting down to 5.5 has been ok, apart from a little hiccup around 9mg when I was trying to drop 1 mg at a time. Sticking to the slow and steady method has worked for me until now.

It sounds as if Im going to just have to accept the feeling of lethargy in the morning until adrenals kick in.

Oh dear, an extra hour in bed 🤣🤣

Mandyq

[DorsetLady PMRGCAuk volunteer]

Hi

Probably a combination of too little Pred in evening [to help the morning shed of cytokines] and adrenals as suggested… so it might be better to try a 4.5mg/1mg split now for a few weeks. That will help the morning feeling and give adrenals a bit of a chance to catch up. Then when you next reduce [and no rush] make it 4mg/1mg and a slower tapering plan [if not already].

[Mandyq in reply to DorsetLady]

Thanks DL - I’ll try that approach. If it works as well as your recommended slow taper methods I’ll be happy. I have gone really slowly and GP has agreed that this is working for me.

Just need to get GP on board with combination of Pred tabs to prescribe each month. Either that or get a pill cutter.

Mandyq

[MiniSpec in reply to Mandyq]

A pill cutter will cost you less than a fiver at your local chemist. I bought one ages ago, and when trying to taper my dose I found it invaluable. I also found that using it I could (if careful!) manage to cut a 1mg pill into 4. The pieces don't need to be exact, because whatever you lose in the smaller pieces you get back in the bigger ones when you take them.

[Mandyq in reply to MiniSpec]

Thank you, sounds like a good investment. Once I get to 5mg I’m planning to reduce by baby steps so I think the pill cutter will be really useful

[jayemmemm in reply to Mandyq]

Hi.

my doctor happily prescribes 1mg, 2.5mg, and 5mm tabs and this enables me to take any dose down to 2mg. So I don't need to use my pill cutter. I reduce using DSNS at 0.5mg steps. Best wishes.

[Mandyq in reply to jayemmemm]

That selection of Pred reminds me of the old Woolies “pick and mix” 🤣🤣but your right with the right combinations of tablets I should be able to organise the dosage to suit

Mandyq

[DorsetLady PMRGCAuk volunteer in reply to Mandyq]

That what we often call it😊

[WeAreAllMutants]

I started my PMR/prednisone journey in July of 2021. Taking pred once in the morning left me feeling rotten at the end of the day. I figured keeping the pred in my body constant was optimal, and this led me to split my dose into morning, afternoon, and evening. This did not do the trick either, so I switched to morning and evening doses. This worked fine for three years. When I tried to cut from 4 to 3.5, my body insisted this was a bad idea - I had to jump by 5 mg and gradually drop back to four. A subsequent attempt to hit 3.5 failed as well. Then it hit me: try going to the recommended once-a-day morning dose. Four mg in the morning felt a bit odd at first, but I stuck to it for a few weeks and then was able to drop to 3.5. I think this success was due to my switch to once-a-day dosing. The once-a-day dose seems to help the body manage its need for prednisone. Now, I have to deal with the dreariness of sluggish adrenals. Find what works for you and do it. We’re all mutants.

[Mandyq in reply to WeAreAllMutants]

Morning WAAM

I think you’re right we are all mutants and as such there doesn’t seem to be a single approach that suits everyone. Throw in differing advice from different GPs and I just end up in a state of total confusion.

I think at some point I’m going to have to move onto a single dose and, as you say, just accept the grumbling from the adrenals.

Good luck

Mandyq