update on Prednisone taper below 5 mg and questio... - PMRGCAuk

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update on Prednisone taper below 5 mg and question about timing of daily dose

LucilleG profile image
12 Replies

I have just completed a taper from 5 mg to 4.5 mg, which has taken 5 weeks. I am to start my taper from 4.5 mg to 4.0 mg tomorrow, but I might wait a week. Everything has gone well, although I do find I am quite tired, and was especially tired yesterday, which is most likely due to my adrenal glands having to finally start to do some work. I just take it in stride and make sure to nap and get a good night’s sleep as often as I can.

I have been taking my prednisone ~6.15 am every morning with some apple sauce, before I head out for a walk. I have found that over the last few weeks, I have had some neck niggles upon waking up, but they go away once the pred kicks in. Two days ago, I decided to take my prednisone as soon as I woke up (so 5.20 am), hoping that getting the prednisone in my body an hour earlier would help not only with the niggles in the neck, but to also ensure that I have a lower level in my blood by midnight to trigger the adrenal glands to produce cortisol.

In terms of the neck niggles, it worked. And last night, I set the alarm for 2 am to take my prednisone to really ensure that by midnight tonight, I would have a very low level of prednisone. Well, all I can say is it disrupted my sleep and I felt sluggish when I did get up, even though I did get almost 8 hrs of sleep. Setting the alarm at 2 am won’t be sustainable for me.

I think I will continue to take the prednisone ~ 5 am. What I wonder is, if I wake up in the middle of the night to go to the bathroom, could I take the prednisone then?

Or could I take the prednisone at 11 pm or midnight? I’m often up at that time. I do find that when I take prednisone, about 30 minutes later, the niggles go away, but that could also be because I’m out walking. I know that it takes longer for prednisone to get into the bloodstream.

What I’d like to know is if it’s okay if the time varies by a few hours everyday? I could see taking it anywhere between 1 am to 5 am. I would just like to have the prednisone at it’s lowest levels by midnight, without it detrimentally affecting my sleep.

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LucilleG
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12 Replies
PMRpro profile image
PMRproAmbassador

If you are taking it at 5am then it should all be out of your system by midnight - they say 97% of a drug will have been eliminated after 4 to 5 half lives. The half life of prednisone is 3 to 4 hours so at the most, the level of pred in the body is negligible after 20 hours and probably much sooner. If you do wake before 5am, it would be fine to take it then.

LucilleG profile image
LucilleG in reply toPMRpro

Thank you so much!

piglette profile image
piglette

The tiredness might be due to the deathly fatigue creeping up due to your adrenals having to start working again.

LucilleG profile image
LucilleG in reply topiglette

Definitely! It truly does feel like deathly fatigue at times...even after 8 hours of sleep, I’m often napping a few times during the day.

HeronNS profile image
HeronNS in reply toLucilleG

It does get better!

piglette profile image
piglette in reply toLucilleG

I felt like a zombie. I had trouble lifting my hand to scratch my nose!

alangg profile image
alangg

You say you are about to start the next taper but might leave it a week. When I was tapering, I would leave at least 4 weeks between finishing one taper and starting another - especially at such low doses when you are relying on your adrenals to take up production of what you are taking away.

And 4 weeks give you time to assess whether the inflammation feels as though it might be building up again or whether you are actually stable on the lower dose.

LucilleG profile image
LucilleG in reply toalangg

Thank you for this. I totally agree with you! I had already decided that I couldn’t start the taper today, but I really wanted to! When I woke up at 4.30 am, I took 4.5 mg of prednisone, and found that the niggle in my neck was much worse than it’s been in a long time. I was so worried that perhaps going to 4.5 was too much. However, by 7 am, the niggle was gone. I’m thinking it might have been more intense because the last dose I had taken was 26.5 hrs ago, whereas it’s always 24 hrs. I will definitely wait a week and see how things go, and see if I need to wait a bit longer. Waiting a week between tapers seems so long, but after my scare this morning, I’m thinking I need to wait at least two weeks. Once again, thank you for your sage and timely advice!

PMRpro profile image
PMRproAmbassador in reply toLucilleG

It isn't slow (or long) when it works!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toLucilleG

Waiting a week between tapers seems so long, 

It’s not long and much better than reducing before you are 100.% sure current dose is sufficient.

It can take at least 2 weeks (sometimes longer) to know that.

AuthorJ profile image
AuthorJ

thank you LucilleG for asking this question. I was wondering about varying the time of taking. I am down to 5 mg now and plan on doing the slow taper to 4.5 soon. Fingers crossed! Good luck. Thank you all who posted replies to LucilleG. Your wisdom is so appreciated!

Brooklyn747 profile image
Brooklyn747 in reply toAuthorJ

You would think tapering your dose slowly of prednisone would be relatively easy, but I found that not to be the case.I realise everyone is different but I see many common difficulties in quite a few posts.

I honestly think I get more help here than I do at any specialist clinics.

For that I'm grateful 🙏

Wishing you all the best.

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