For the past several months I wake around 3-4 in the morning with stiffness and aching, I toss and turn but cannot get comfortable. I either eventually go back to sleep or just get up. Once up I am fine. I am currently on 2.5 mg pred, 5 weeks into this dosage.
I take my Pred in the morning around 9ish.
Wondering if this is normal with PMR, or anyone else has experienced the same.
Once up and moving I am fine and good throughout the day.
I am puzzled.
Have you tried taking your Pred when you wake up at 3-4 am or waking deliberately at about 2 am? The inflammatory substance ( cytokines) enters the system or becomes activated at that time. Taking your small dose of Pred should stave off the stiffness and pain , during this phase of your illness. It will prevent it from becoming established. This has worked for me. Currently I am not waking early naturally and the stiffness and pain has returned. I think I will set an alarm. I am tapering to 4.5 mgs.
I tried the 2am dosing & it worked for me, however, when I saw my rheumatologist (consultant with years of experience & reassuringly knew a lot about PMR) he said it was not recommended. He explained that taking it at that time suppressed the adrenals long term natural function & that wasn’t what Pred was for. He told me the best time to take it was 7am as it then kicked in to balance the cortisol spike that occurred around 4am. Keeping the adrenals functioning whilst limiting the negative affects of the cortisol spike was paramount to controlling the pain & also the health of the adrenal glands. This made sense to me & , having tried it, it seems to work. If I take it later I find it’s not so effective (morning pain lasts much longer). It’s difficult to know if the improvement is due to the timing of the dose or the increase from 5mg to 7mg that he prescribed at the time. The improvements didn’t occur immediately (it took about 10 days) so I’m tempted to think it’s the timing rather than the dosage.
I am glad you have a Rheumatologist that you trust. It is key to a smooth experience. When I was seeing an Endocrinologist and my ( wonderful Rheumatologist) there was some conflict in the advice and differing objectives. The main thing is, you have obtained relief!
"He explained that taking it at that time suppressed the adrenals long term natural function & that wasn’t what Pred was for."
It has been recommended by rheumatology groups and I'm afraid his reasoning is incorrect. It is very nice - but it doesn't match the physiology in patients with a disease rather than healthy persons/ The trigger for the adrenal production of cortisol is a low level of corticosteroid in the blood at about midnight - and taking the pred at 2am is ideal for that since that gives a lot longer for the pred to get to a low level before midnight. The cortisol spike ISN'T at its peak at 4am - it is about an hour after you wake up, Taking pred at 7am doesn't get it into the system for another 1-2 hours. And 2mg more is a significant increase.
This discusses a rheumy's view:
hcplive.com/view/nighttime-...
including the dysregulation.
It is fairly typical of PMR, the inflammatory substances are shed in the body at about 4am and they used to wake me if I was on slightly too low a dose of pred. In addition, the antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person and if you are a bit borderline on the dose and at the lower end of the antiinflammatory range then you may well feel the effect a bit earlier. Stiffness that improves with movement is seen in PMR but back pain that appears a bit earlier at night and goes with movement is also typical of another rheumatological condition that can be misdiagnosed as PMR.
If you leave taking pred until 9am, the inflammation has been getting going for a good 4 or 5 hours. Taking it at 2am is the ideal, it is present, ready and waiting for the inflammatory cytokines in the early morning so they never get a hold at all and there is no inflammation to clear out. This can often mean you manage better on a slightly lower dose. If you are waking earlier why not take the pred earlier - or if that doesn't help, try splitting the dose to extend the antiinflammatory effect to over 24 hours.
Thank you all for your replies to my query regarding stiffness and aching. Sorry that I was not able to respond to individual comments as we had unexpected guests stay with us for the week. Their visit kept me busy and away from my computer. Thanks again and take care.
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