Taking preds at 2 am

[Nanatoo]

why is 2 am a good time to take preds?

[DorsetLady PMRGCAuk volunteer]

Two hours before the cytokines come out to play at 4am [the substances that cause your pain etc]… taking Pred at that time allows it to be in your body to deal with issues…

[Hrblock57 in reply to DorsetLady]

Do you have breakfast at 4am to take the pill?

[DorsetLady PMRGCAuk volunteer in reply to Hrblock57]

I never took mine that early, but many find a spoonful of yogurt or a small plain biscuit is probably enough... just something for stomach to work on...

[PMRpro Ambassador in reply to Hrblock57]

You would take the pill at 2am, it has to get into the system BEFORE the cytokines appear on the scene.

[Crochetgirl65_ in reply to DorsetLady]

Will this work when on a very low dose do you think? Recovering from ‘adrenal stutter’ was on zero, 0.5 mg dead slow method. Had to go up to 1mg, then 1.5mg and finally today I gave in and took 2mg as I had more or less constant nausea and aching all over by about 11am over the last 10 days. Starting to feel very confused with it all. I had no problems like this getting to the zero dosesShould I tell the Rheumy team, my GP? Many thanks

[PMRpro Ambassador in reply to Crochetgirl65_]

" I had no problems like this getting to the zero doses"

When did the nausea and aching start? Often you can get to zero - because there is some reserve for any gathering built up inflammation, but once you stop pred altogether there is nothing scooping out a bit of inflammation and then, over time, it gets to a level that causes symptoms again. Same with adrenal function - it can take time to register it's getting no help. I was fine at 5mg for a couple of months and then a bit of stress with paperwork and, by our standards, extreme heat and I needed a bit more help on the adrenal front. 6 instead of 5 and I feel totally different.

[DorsetLady PMRGCAuk volunteer in reply to Crochetgirl65_]

You probably do need to discuss with medics -but hopefully staying at 2mg (provided you feel better) will give your adrenals a chance to rally.

[Crochetgirl65_ in reply to DorsetLady]

Yes, this is the best I’ve felt for a while. Zero/0.5mg I felt pretty good just a bit tired. Then we had a couple of things happen in the family, around mid August, one of which was really making me very anxious. inexperience meant that I didn’t up my dose and so ended up in a lot of pain (not PMR) feeling sick and extremely tired most of the time. I have increased dose by 05mg at a time until finally I went to 2mg. I am confused because I know I have to ‘dig in’ to get my adrenal glands working again after 10 years on pred but this period never seemed to improve. Maybe I’ll try taking my 2mg at 2am?

[DorsetLady PMRGCAuk volunteer in reply to Crochetgirl65_]

Good you feel better and stay at that dose for a while -it’s such a kid dose anyway.

When you take it is your decision - there is no wrong or right time -apart from what’s right or YOU!

[PMRpro Ambassador]

By taking prednisone at 2am and 3am for prednisolone, it reaches its peak in the blood just before the inflammatory substances are released in the body so they never get to actually start to create inflammation in body tissues. That ensures a good start to the morning which is the time things are worst otherwise.

[Nanatoo in reply to PMRpro]

If the preds are keeping the pain under control( and I’m not getting any pain at the moment) is it sensible to continue taking it after breakfast? I’m reducing from 20mg which was my start dose at the end of July and I’m down to 12.5 with the hope to be down to 10mg within a month. Every time I see a gp they fill me full of dread that I’m even taking prednisolone and keep suggesting I don’t have pmr but when I ask what else could it be they can’t answer. This is the only place I feel I’m getting support

[PMRpro Ambassador in reply to Nanatoo]

If it is working for you as it is that is fine - for some people the antiinflammatory effect lasts a good 24 hours and their mornings are good anyway.

GPs who try to scare patients on pred need a reality check. I've come across a few who themselves developed PMR later in life - and admit now they understand!

[Nanatoo in reply to PMRpro]

Because my blood tests don’t show raised markers the gp ( I never see the same one twice) always uses this as a reference. When I tell them I had all the classic signs of pmr and that was the reason the rheumatologist gave me the two week steroid trial, I get the same response. “ well steroids would help with any number of conditions” even though the rheumatologist never indicated he thought it was anything else.

[PMRpro Ambassador in reply to Nanatoo]

Ah yes - but it depends HOW you react to pred to some extent and symptoms always trump lab results. Treat the patient in front of you - not the textbook patient who probably doesn't exist.

Pre-pred up to 20% of patients have markers that remain within the range though they may well be raised for them - my normal is low single figures, if it is 18 it is very raised for me but still under the top of the range which is 20. And once you are on pred - being in range means there is no inflammation left around long enough to trigger the liver to produce the proteins that raise them. All that shows is that the pred is doing what it should do, manage the inflammation.

[HeronNS in reply to Nanatoo]

If you are doing well there is no reason to change your dose time, at least not for now. I managed very well with the breakfast time pred, including a taper to zero after about six years. But that flirtation with zero didn't last and I seemed to have a big increase in disease activity. Eventually, because I was having trouble tapering, I tried the 2 am dosing, with a bit of plain yoghurt, and it actually worked very well. Should add that I think I also got a bit of a boost from the Shingles vaccines I had around that time (Shingrix). My highest dose while doing that was 8 mg I think, and it took some months but eventually got back to 2 mg which had been my previous lowest best dose. At that point I switched back to breakfast, just for convenience, although I seldom had trouble falling back to sleep at 2 am. Also I think the breakfast time dose is better for encouraging adrenal function. Since then - a couple of years now - I've been very slowly tapering, seriously doing it dead slow nearly stop 🛑! Yesterday I took no pred, having been stable at half a mg for a couple of weeks, and can honestly say it made no difference. But I carefully chose a day when I had nothing in particular to do. Will have another zero day next week, all being well, and anticipate this taking a long time as I hope for full return of adrenal function. Crossing fingers and knocking on wood (really)!

[Hrblock57 in reply to PMRpro]

I cannot take mine that early I have thyroid issues

[PMRpro Ambassador in reply to Hrblock57]

That is up to everyone individually But taking pred at 2am, you would still be able to take thyroid meds on an empty stomch in the morning, you only need 3 hours spacing. Or you could take the thyroid meds before bed on an empty stomach, 3 hours after food, and that often achieves better control.

drugs.com/medical-answers/y....

[SheffieldJane in reply to Hrblock57]

I take my Levothyroxine in the morning and before breakfast a few hours after Pred. It has worked OK my blood tests are fine. I barely think of Graves’ Disease now. It is sitting quiet while GCA/PMR is out to play.

[humlies in reply to SheffieldJane]

I now take Levothyroxine last thing at night; I have so many other meds like many of us, and that seems to work for me. This is also when I take Candasartan for blood pressure. As you say, Graves is the least of my concerns!

[howtotaperdown in reply to PMRpro]

I suppose you can go back to bed after taking them? Plus then would have to take the omeprazole 30 mins effréné the pred? I would love to try this and only hesitation as I feel a flare coming on!

[PMRpro Ambassador in reply to howtotaperdown]

Once you are established on omeprazole the effect lasts 24 hours, you can take it before bed, no need to wait until shortly before the pred. I seriously doubt many actually get up to take pred at 2am, they have it beside the bed with a bit of cheese or a small amount of yoghurt (which isn't going to go off at room temperature), take the tablets, turn over and go back to sleep.

[howtotaperdown in reply to PMRpro]

but for a poor sleeper is it better to take half the dose at 2 am or all of it?? I've got down to 7.5 right now, and sleeping right now, so worried about upsetting the sleep patterns further....

[PMRpro Ambassador in reply to howtotaperdown]

I can't tell you that - you will have to try it. It isn't straight into your system when you take it - it takes a couple of hours. Many people take it and have no more problems sleeping than usual - everyone is different.

[Snnib in reply to PMRpro]

I take mine any time between 1.30 am and 3am just when I wake with a yoghurt drink. Works for me, although at the moment having a flare gone up 5mg for 10 days hope it knocks it on the head 41/2years now with this I won't say don't want too swear..

.

[Bachfugue]

I use enteric resistant empty capsules (can buy from Amazon) and fill with my daily dose and take at bed time around 1130pm. It’s worked well.

My GP will only prescribe packs of 1mg tabs as concerned I may make a mistake between 1mg and 5mg tabs (I have a PhD and trained as a nurse in my youth) and swallowing several is no joke. Currently on 7mg.

[PMRpro Ambassador in reply to Bachfugue]

For goodness sake - how childish!!! How many times have nurses rescued doctors from medication errors? But of course - as far as he is concerned you aren't a proper doctor ...

[Bachfugue in reply to PMRpro]

Extraordinary isnt it ?!!

[Mrsd12f in reply to PMRpro]

Twice, in my recent history! Once, when the rheumatologist increased my daily hydroxychloroquine from 150 mg to 800 mg per day and again, last week, when my she wanted my prednisolone reduced to 0.5 mg by November. (Currently on 3 mg and doing my own reduction to 2.5 mg following DL’s taper.) Luckily, on both occasions, I was able to speak to the excellent nurse who deals with my osteoporosis and she has “spoken to” the rheumatologist.

[PMRpro Ambassador in reply to Mrsd12f]

Shakes head sadly ...

[Longtimer in reply to PMRpro]

I had to re-read (I may make a mistake with 1 mg and 5 mg) thought I misu nderstood!...what on earth is going on? He can't be a proper doctor either!....give me strength! That's my rant over...

[gaqke10 in reply to Bachfugue]

I also take 15 mg pred at bedtime in enteric capsules. I wake up with no pain. Since I am working my way down from 60 mg (GCA diagnosed in June) I take the rest with breakfast.

[Bachfugue in reply to gaqke10]

Bad luck being diagnosed with GCA at this stage of your PMR. Was it a sudden process?

[gaqke10 in reply to Bachfugue]

Bad luck all right! I'd already had PMR for 5 years. All of a sudden it hurt to wear my glasses. I went twice to the to the optician's to get them adjusted before I realized that it was my scalp that was overly sensitive. Also my jaw began to hurt and my neck got stiff and my vision was more blurry than usual. Four symptoms. I went to my rheumy who prescribed 60 mg prednisone for probable GCA.

[Bachfugue in reply to gaqke10]

So sorry to hear that. Such bad luck. Did the symptoms disappear immediately? I hope it goes into remission v v soon.

[gaqke10 in reply to Bachfugue]

The first day I sobbed and sobbed. The second day I just told myself to face reality. We tried 40 mg, then 50 mg, but I still had jaw pain. At 60 mg the symptoms disappeared. I'm now down to 20 mg and started Actemra. Fingers crossed.

[Bachfugue in reply to gaqke10]

So sorry to hear of your recent journey into GCA territory. Just awful for you. Sending healing vibes from across the pond.

[LMali]

I have just recently started taking my 5 mg pill at 2 am as I was waking with pain in the morning which diminished during the day (after taking pred with breakfast at 7 ish). I now wake without pain! I await to see what happens when I try to taper (again). I just have 2 crackers, water and the pill by my bedside so I don't have to wake up too much! Go to the loo and hopefully go back to sleep!

[Chiqui1950]

My symptoms dissappeared completely once I started taking pred at 2 am or after midnight--- no more headaches for many months now---- but there was a time when I could NOT taper--- patience--- managing stress and support!! I am at 3 1/2 now and with ESR 10 and CRP 1. So grateful for this forum!!