Looking for the golden time to take pred - PMRGCAuk

PMRGCAuk

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Looking for the golden time to take pred

Marijo1951 profile image
35 Replies

I was interested in responses to Crochety's post yesterday advising to take pred at 1-2 a.m. I don't think I could manage this either by staying up late or by waking up in order to take it (although sometimes admittedly I'm awake in any case) However I'm wondering about possibly taking it at 11.30 to midnight and then going to bed. Although I don't have nightly insomnia as I did when I was on a high dose, my sleep pattern is still a bit hit and miss and I would like to get a regular good night's sleep. At present I take it at 7-8 a.m. with breakfast.

Has anybody else tried taking it just before midnight and, if so, did it help sleep? And would a couple of tablespoons of plain yogurt be enough food to take with it? I'm fortunate in that pred has never upset me gastrically.

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Marijo1951 profile image
Marijo1951
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35 Replies
SnazzyD profile image
SnazzyD

I used to take mine (enteric coated with longer absorption time) about 5:30pm, ate my meal at 8pm (food seemed to reduce the absorption) and by the time I started to feel wobbly and horrible (Pred made me feel that way for a few hours) it was time for bed. I would get off to sleep well but still woke with the birds. I tried taking it late evening way after an earlier meal, but it clashed with a bedtime Gaviscon dose. I only changed to morning dose when advised to do so at 4mg by the Endocrinologist so as to help my returning adrenal function.

Marijo1951 profile image
Marijo1951 in reply to SnazzyD

Obviously it's worth experimenting. I kind of absorbed from the rheumy in the first place that I should take it at breakfast time and hadn't thought much about it since.

PMRpro profile image
PMRproAmbassador

You have to try - for some it won't work, for others it will. If you are still up at towards midnight it is definitely worth trying. Plain pred takes 1-2 hours to be absorbed - what time do you eat in the evening? That may be late enough to slow it down. And it is a fair time for the pred to get out of your system for the next evening so you might get to sleep before it gets there.

Marijo1951 profile image
Marijo1951 in reply to PMRpro

I've found that if I go to bed early, even if I'm dog-tired, I wake up at silly o'clock and can't get back to sleep. So I tend to unwind slowly and go to bed about midnight at which time about 7 out of 10 nights I can sleep for at least 6 hours. This is completely different from my pre-pred days when I was early to bed, slept like a log and up before 6.30. I hope I get back to this routine when (if?) I come off pred. I've got into the habit of eating quite early but, if I do decide to try taking it at night, I'll maybe delay my dinner til 8 and try having something light like a bit of yogurt with the pred.

Daughters2 profile image
Daughters2 in reply to PMRpro

Hi. My mum is really struggling since going back to a higher dose of 15 pred. Bit of a flare up a mi tv ago so increased back up to 20 from 5 she’s totally blind with Late diagnosis GCA So has no joint aches at all Really interested about the timing since she could have at 11:30pm or 1/2/3am. She’s going to experiment because she normally takes at breakfast at about 9:30am after restless night. Wondered if she should take the lansoprazole at the same time? Or just the pred? Thanks so much.

PMRpro profile image
PMRproAmbassador in reply to Daughters2

If she needs the lansoprazole then she should take it shortly before the pred.

Daughters2 profile image
Daughters2 in reply to PMRpro

Thank you so much for reply so late x

PMRpro profile image
PMRproAmbassador in reply to Daughters2

Even later here in Italy ;)

Daughters2 profile image
Daughters2 in reply to PMRpro

Much appreciated and jealous you are in Italy. Was it yourself on the zoom call yesterday? X my sister and I were on.

PMRpro profile image
PMRproAmbassador in reply to Daughters2

It was - I wonderd if it was you!

weatherman69 profile image
weatherman69 in reply to PMRpro

so you guys have zoom calls?? about GCA? would love to know about it

PMRpro profile image
PMRproAmbassador in reply to weatherman69

This was a specific scientific meeting about a future clinical study in PMR, not GCA, and by invitation to potential stakeholders.

There have been seminars and the annual members meeting and the links to the recordings are on the PMRGCAuk website. But I don't know where exactly off the top of my head.

IslandRN profile image
IslandRN

I have my alarm set for 2 am and take my prednisone at that time....I keep water and pills on my bedside table and so far have not had any gastric issues however I don't see why one couldn't have a vanilla wafer, cracker or some other snack available if worried about upset stomach. I am able to roll over and fall right back asleep and wake up around 7 am feeling great. I started taking my full dose at 2 am around 3 months after diagnosis based on suggestions from this group and it has been a life changer- when I took it upon waking, I would wake up stiff and it would take until near noon for me to feel somewhat human.

Marijo1951 profile image
Marijo1951

I'm very lucky as my pain has been very well controlled since I started on pred, though it was excruciating before. It's the sleep irregularity that bothers me, although now I'm only taking 7 mg per day, it's far from the nightly insomnia that I experienced before. Having said that, I'm having a wakeful night tonight - took my pred at 1.20 and will be interested to see the consequences.

I'm always glad that at least I was retired before I fell ill. I have enormous admiration for those who hold down a job while suffering.

Flosy profile image
Flosy in reply to Marijo1951

hi,can i ask how old you were when retired.as i am 64,still working as a housekeeper.but have been off nearly 8 months now throught this covid virus,due to go back in nov.i want to go back part time.

Marijo1951 profile image
Marijo1951 in reply to Flosy

I was 62. I could have stayed on, but hated the management, the office, the commute etc, so got out. I was born in 1951 so was on the ''sliding scale'' during the interim period between the female retirement age going from 60 to 65 and I was able to retire and claim my state pension at 62 and a few months. This plus my small work pension enables me to keep my head above water.

Good luck. I hope you do manage to reduce to part time. I think here in the UK, those woman a few years younger than me have had a raw deal.

nickm001 profile image
nickm001

Later the better as close to 2AM as possible. I usually take 2-4 spoons of yogurt with it. If you go to sleep right away, it shouldn't interfere with sleep pattern, but as pointed out, everyone is different and you really have to try it to find out what works for you.

-LJ- profile image
-LJ-

I started out 7-8 am like rheumi suggested. Really didn’t work for me. I finally settled at 3 am...worked perfectly...would go back to sleep and felt great when I got up. Took with some cheese or yoghurt or banana. Seemed like it would be a pain to get up at that time...but fell right into the routine very easily. You could even have a cheese stick by bed and not even get up!

Bonnie-ma profile image
Bonnie-ma

It has been a real game changer for me since taking my Pred at one o clock in the morning. Gone is that pain on waking and the long wait until the afternoon for relief. It’s been a month now since trying this new time. It feels like a minor miracle and my fingers are firmly crossed!

Italy2 profile image
Italy2

Since reading on this forum about taking pred in the early hours, I keep a little box of biscuits by my bed with the pred, and now wake naturally at about three and think 'oh yum, a midnight snack '- sit on the side of the bed, eat a small biscuit, take the tablets and bobs your uncle - off back to sleep until the alarm for another type of med at 7! Who said ageing wasn't interesting!

Marijo1951 profile image
Marijo1951

Thank you all. I've been reading this forum since July 2017 and somehow hadn't absorbed till now that many people don't take their pred at the standard time. Anyway last night after posting I couldn't sleep and thought that since I was awake, I might as well experiment now and took the pred at 1.20. I had the TV tuned to BBC News and it was coming up to the Pence/Harris debate and I ended up watching it. I finally got to bed at 4 a.m. and slept through until 10. I feel better than usual in some indefinable way. I'm certainly going to give it a go at least for a few weeks and then reassess.

petros1931 profile image
petros1931

With pmr from 2011, I have experimented with pill-time from breakfast, to 2am, 4 am and bedtime around midnight. My best time using coated pred is bedtime, no adverse reactions, no pain, perfect timing. Worth experimenting....Good luck, be painfree.

Marijo1951 profile image
Marijo1951 in reply to petros1931

Thank you. That's very encouraging.

Hayling1 profile image
Hayling1

I take my Pred about 7 am I find that within an hour I’m feeling the benefit so I feel I’m set up for the day, I have reduced from 20mgs to 6 1/2mgs with the help of Dorset lady - thank you!

NickWarwick profile image
NickWarwick

I split my pred at the moment as I was waking up feeling rubbish and didnt really get going until lunchtime having popped some pills at breakfast.

Started on 15mg in July. Now 12.5mg. Split 2/3 before bed and 1/3 in the morning. I havent tried tinkering with those proportions. Sort of just made it up based on something i read on this forum. The evening dose at 11.00 ish is a good 3 hours after food (is that a problem ?)

Sleep fine usually. Always wake up at 6.30 for work.

My recent issue is that the chemists could only supply coated 2.5mg tablets which i tried to take at a different time to allow for the different time to absorb. That hasnt gone terribly well. Might be the timing or might be the drop in dosage. Mainly pains in my left shoulder which wakes me up at about 4.00am and then stays with me (at much lower levels much of the day)

Have now ordered some 1mg tablets and will be going back to 13mg i think to see if that works , followed by a drop of 1mg per month. Again this is my strategy as opposed to anything the GP had to say (which wasnt much)

Anyway the main message is that the split dose definitely helped me i think

Good luck

Marijo1951 profile image
Marijo1951 in reply to NickWarwick

Thanks Nick. So clearly there are many strategies. I've never split my dose, even when I was on 60 mg. Now I'm down to 7 mg. maybe I'll try splitting the dose and see if that improves my sleep pattern.

Regarding food, I was told by my rheumy to take pred with food and the instructions on the pred leaflets say the same thing. However I think this might be the manufacturers ''covering themselves'' because of cases when people have gastric problems with pred.

PMRpro profile image
PMRproAmbassador in reply to NickWarwick

Quite a few people find that if they take the enteric coated before bed, it is working by the morning - the absorption rate is affected by various factors including the amount of food in the stomach. The usual split tends to be the larger dose in the morning.

But the bottom line is that everyone is a bit different, they absorb different amounts of pred and at different rates. No wonder it is so difficult to get the right approach.

Fireleigh profile image
Fireleigh in reply to NickWarwick

I’ve been following this discussion closely as I am experimenting with different times. I asked my GP who really wanted the pills taken with a full meal so that ruled out a midnight dose. I wonder maybe slow release tablet is the answer. Are coated pills the same as slow release. Also is there an extra cost. My GP worries about cost.

Marijo1951 profile image
Marijo1951 in reply to Fireleigh

I understand that the coated pills are more expensive, so I suppose the general rule is to reserve them for those with gastric problems.

I must admit that my main problem with timing is the question of how important (or unimportant) it is to take pred with food. I'm also trying to lose weight and want to try ''intermittent fasting'' or ''time restricted eating'' as part of my strategy. This means only eating between certain hours, ideally between 11 a.m. and 7 p.m. or between noon and 8 p.m. - not very compatible with pred-taking.

PMRpro profile image
PMRproAmbassador in reply to Fireleigh

There are no SLOW release pred tablets: there are enteric coated tablets which have a coating which is resistent to stomach acid so they pass through the stomach and are only broken down in the less acid environment lower down the gut. And there are DELAYED release tablets (brand name Lodotra in Europe or Rayos in the USA) which have a special coating which take 4 hours to break down in the right conditions in the stomach releasing the entire dose at the same time, exactly the same as taking plain pred but approx. 4 hours later.

Enteric coated pred is only available in the UK. The delayed release Lodotra are NOT available in the UK except privately as it costs up to £100 per month depending on the number of tablets you need to make up the dose (it comes in 1, 2 and 5mgs and cannot be cut) so the NHS no longer approves its use.

NickWarwick profile image
NickWarwick

As i understand it the coated pills are slow release. 4-5 hours as opposed to 1 i believe, but others here know more than me. Didnt do me any favours as i was mixing with standard ones.

Never had any problems with guts or insomnia so i take them at bedtime.

Dont know about costs. I have to pay for my prescriptions as one of the few working tax payers left in the UK.

Doubt a few extra bob on coated pills will stuff the NHS with the amount of money HM Govt is throwing around at the moment !

Marijo1951 profile image
Marijo1951

No, but GPs tend to be very aware of what drugs cost - all to do with their budgets I suppose.

PMRpro profile image
PMRproAmbassador in reply to Marijo1951

I don't think they are - their practice manager might!!!

Marijo1951 profile image
Marijo1951 in reply to PMRpro

Mine must have a scary practice manager given the fuss they make. One doctor made me feel very privileged when he prescribed some ''ridiculously expensive'' eye wipes for my blepharitis. I didn't dare ask for another prescription and have always bought them since (they are expensive but very effective)

PMRpro profile image
PMRproAmbassador in reply to Marijo1951

My niece has cystic fibrosis and was put on the first of the newly approved drugs - didn't help but before she could start the second she had to finish all the first. But there we are talking about £7,000 per month ... THAT is expensive.

I am on at least 2 lots of medication that cost IRO £100 per month - no-one here has ever made me feel unworthy of them.

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