Diagnosed with PMR August 2023. I started at 40 mg and now down to 16.25. If I take full dose in the morning, pain returns and I have to wait til noon to have arms. I tried taking full dose at 3 am but sleep disturbed so much cause I couldn’t get back to sleep. Tried splitting dose half at night half in morning. Still pain in morning. Now trying 10 mg at night and 6.25 in morning. Pain managed but waking up at 2-3 am for hours if I get back to sleep at all.
Ideas? You are all a lifeline. Thank you for being there. Deb
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Alohaoillady
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Is your pain managed when you take your full dose at 10 am and have the wakeful spell at 2-3 am? If so what about midnight? Thereby waking later.
The inflammatory substance ( cytokines) is released by the body at around 2 am, this causes the pain. Pred takes about 2 hours to get into the system. You may find this time optimum for allowing sleep and pain relief. ie midnight.
It could be that you have reduced Pred too quickly to cover your pain mind you 40 mgs is a high start dose for PMR - 20 mgs is more usual - unless GCA, the sister disease is also suspected.
Sleep deprivation is a common problem for us. I manage it by having a regular nap after lunch. This gives me an evening at least. There are many threads to explore about insomnia and dose splitting. Some are to the left of my iPad screen, they may be below your post on a phone.
Experimenting is key. I have changed my timings a few times over the years. See the tapering advice in FAQs accessed on this page.
I’ll try midnight. Usually with 10 mg at night and 6.25 in the morning I’m comfortable. But this being awake 2-5 am is so inefficient!! It’s time to sleep - why am I awake!!! Thanks
Maybe try other way around - usual advice if splitting dose [for whatever reason] is 2/3rd morning, 1/3rd evening….and unfortunately disturbed sleep is par for the course for many. It might be inefficient- but it’s a fact of life with Pred…
Read through this link, including replies - it might give some suggestions to help -
Are they sure it is "just" PMR - 40mg is very high for pred and the dose you are on now is a more usual starting dose for PMR so I would expect it to perform better. Although to get from 40 in August to 16mg now is quite fast and maybe you would do better returning to 20mg and then tapering in small steps once everything is under control again.
You can't and maybe it was a good start, especially with the fairly speedy reduction. But for the moment, I think you have probably overshot the dose you need at present.
I was just thinking that, since August, was a very fast taper. I do take my 16 mg. at bedtime, around 9:30. Bed at 10. Wake up to pee maybe once. I sleep 8 hours. This has worked well for me. Also on a slow taper and not what the rheumy wants.
I consulted with my GP when experiencing morning stiffness. Began splitting my dose (2/3 at 2am and 1/3 at 11am). This alleviated the morning stiffness well, however I found getting up at 2am very inconvenient (I sometimes slept through my dose, dropped pills in the dark, had to eat something then try and get back to sleep).
I discovered empty enteric capsules (purchased online from a company called “Capsuline”), and I now stuff uncoated pred tablets into them and take that dose at 11pm. It is onboard by around 2am when the cytokines are released. Works like a charm. I take my other dose of uncoated pred at 11am. We don’t have enteric coated pred here in Canada or I would have tried that.
Hope you get some relief in the mornings one way or another.
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