Does anyone take Prednisolone in the evening? - PMRGCAuk

PMRGCAuk

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Does anyone take Prednisolone in the evening?

Dambusters profile image
26 Replies

I am new here. Doctor changed me from evening to mornings. I now wake in pain.

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Dambusters
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26 Replies
PMRpro profile image
PMRproAmbassador

I take mine at night - but I take a special version that is meant to be taken at 10pm, it releases at 2am and is working at 4am. Unfortunately it isn't available on the NHS in the UK and is extorniately expensive in the USA.

However, there are a lot of people who either split the dose so mornings are better or take their pred at night. Everyone is different - you have to experiment a bit to find what suits you.

Devoid profile image
Devoid

Hi I’ve recently started to take mine at night and feeling much better for it , when I was taking it in the morning from 10 mg down it was sending me asleep and also head feels clearer since changing the time

Dambusters profile image
Dambusters in reply to Devoid

Many thanks. I am down to 10mg now. Did you do a gradual change or just change over?

You sound to have had the same problems as I now have.

Devoid profile image
Devoid in reply to Dambusters

Hi I got down to 5 mg before I changed over so just did a straight change, from what I understand if the dose is sufficient it probably covers you for more than 24 hours, perhaps you could try a gradual approach and see how you go . I have been amazed at the difference it has made to me . On the initial large dose I couldn’t sleep but the last few months taking it in the morning it was like having a sleeping tablet .

GOOD_GRIEF profile image
GOOD_GRIEF

I split my dose until I got to 10 mg. Then I started taking the whole dose at night after dinner (which is usually ready at 9PM). I accomplished this by reducing the morning dose by 0.5mg.

This way it's sitting in my system waiting for the inflammation released around 4AM. I usually sleep through until 5 or 6AM, and have a little stiffness in the morning, but not enough to keep me from getting around.

Unless you're taking other medications and the doctor is trying to help you space those doses, there's no reason to take the pred in the morning.

I was planning on moving down from 6mg to 5.5mg on May 1st, but decided to stay put until we get back to something like normal life after lockdown. It's odd that while there's so much less to do, everything is more unpredictable.

Dambusters profile image
Dambusters in reply to GOOD_GRIEF

Thank you. I am currently taking 10 mg in the morning but it sounds as thought I could split the dose and change back to evenings without having to do it an hour later each day.

PMRpro profile image
PMRproAmbassador in reply to Dambusters

It is simple to switch: take the morning dose as usual and take the next day's dose in the evening. The small amout extra in the 24 hours will give you a good day the next day and do no harm at the lower PMR doses.

diana1998 profile image
diana1998

I take mine at 7pm after eating. Lasts me fine till next dose. But we are all different. I used to split the dose when on over 8mg eg 5mg and 3mg. Do what suits you best.

Dambusters profile image
Dambusters in reply to diana1998

Thank you. That is when I used to take it and found it worked. When I was to reduce to 10mg a new doctor to the practice told me I should take it in the mornings. That is when the trouble started. I am going back to my after evening meal dose.

Pixix profile image
Pixix

I take mine at 3am, ahead of the 4am inflammation release...this way I’m ready to get up & not in pain when 8am arrives! Guess you have to experiment to find the best for you.

Dambusters profile image
Dambusters in reply to Pixix

Thanks. I have to take mine after food because I have other medical problems but I am going back to taking it in the evenings now I know others do.

Pixix profile image
Pixix in reply to Dambusters

I have to eat a little food with mine (and also take lansoprazole at the same time). I eat a couple of ritz crackers, & then all seems well!

borednow profile image
borednow

Started off 3 years ago taking them first thing in the morning. OK for a while but then morning pain became unacceptable. Now, after several experiments, find taking them last thing at night works best for me. Good nights sleep and no pain in the morning.

Dambusters profile image
Dambusters in reply to borednow

Thank you for your reply.

I was diagnosed late afternoon and took pills at night...no problem. My doctor left the practice and the new doctor told me I should take them in the morning. She moved me back an hour a day. I had only been on that regime for a week when pain in the morning became intolerable.

I found this helpline :)

I split my dose and took some last night (Less pain today)and the rest this morning.

Tonight I will take a bigger portion of the dose and smaller tomorrow then by the next day I will be taking full dose at night. ;)

It worked when I was first diagnosed, almost a year ago.

borednow profile image
borednow in reply to Dambusters

I think that it's your body and your pain (somebody who knows better than I may come through and correct me!). It has been said many times on this forum that if all GP's and, indeed, Rheumatologists had experienced PMR, they might be a bit more sympathetic!! Once you get on top of your pain again, I wouldn't tell the GP you'd changed the timing. Mine's never asked.

Irishfurbaby profile image
Irishfurbaby

I have PMR and I take Iborufen and Paracetamol at night a nd sleep on n electric with an blanket. That helps me. Then take my tablets in the morning.

in reply to Irishfurbaby

It's not recommended that you take ibuprofen and pred on a regular basis. I used to use an electric blanket for my back pain but for various reason I can't now. Look after your tummy. 🌻

Dambusters profile image
Dambusters in reply to

Thank you. I can't take Ibuprofen because I have gastric problems. I do take Paracetamol and I do use an electric blanket (Might not tonight; it's so hot today)I am going back to night dose of Prednisolone becasue that worked for me initially and the PMR only flared up when new Dr persuaded me that I should take pills after breakfast.

daworm profile image
daworm

I've taken mine at night and will probably do so again...ive read a couple of things about it and some Dr's recommend it especially if you have lots of morning pain...it never disrupted my sleep at all, makes you have to go to the bathroom a bit more though so that may affect sleep but not as much as pain and stiffness in the morning..

Dambusters profile image
Dambusters in reply to daworm

Thank you. I initially took it at night but new doc persuaded me to move to mornings.

I had no morning pain when I took it at night and only came back when I had gone to morning dose. I had no sleep problems either - apart from up once to loo, but that happened even before the PMR. ;)

By tomorrow night I will be back to taking full dose at night.

Npp20 profile image
Npp20

My doctor does not understand that taking prednisone in the morning does not work for me. Taking it at night is the only way I don’t lose my mind and the first half of the next day.

Dambusters profile image
Dambusters in reply to Npp20

Neither does my new doctor. The morning dose takes about 5 hours to kick in to relieve the pain. I had no problems with the night dose before she told me that what I was doing was wrong, so I'm going back to doing that.

I can get up in the mornings and do things whereas being on the morning dose has rendered me pretty useless and in pain for most of the day.

PMRnewbie2017 profile image
PMRnewbie2017

Perhaps some science and some background information may help, especially as you are new to this site, Welcome, by the way.

The reason Drs tell patients to take Pred in the morning is largely because that's what the Data Sheet says! A Data Sheet is a document the drug manufacturer produces and gives prescribers information they require about dose, side effects, contra-indications etc. These days Data Sheets are referred to as an SPC. (Special Product Characterisitics). Because higher dose corticosteroids can cause insomnia, there is a recommendation in the SPC that they should be taken "in the morning with breakfast". This has become enshrined in medical and pharmaceutical practise and since few of these medical professionals have ever taken steroids, the truth is, they know no different and will always defer to the written word!

This may be fine for patients being treated for asthma, colitis, Crohn's etc but PMR and GCA are different.

In PMR, the body produces an inflammatory chemical (Interleukin 6) at around 4am and the amount produced will reflect how active the disease is and how bad our symptoms are. So if you can imagine, by the time 8 or 9 am comes along and you take your Pred dose with breakfast, you have had a release of IL-6 for 4 or 5 hours. By this time you will be carrying an inflammatory load and this is felt as pain on waking and will continue until the tablet has dissolved, the drug has been absorbed, reached the receptor sites in the body where it acts and dampens down the inflammation. Eventually the pain reduces and by afternoon, hopefully we will be fine.

So, to counter this, many of us either take the Pred at night or at around 2am so that it is in the system and available to block the IL-6 release at 4am. This works well for many of us. If we reduce our Pred dose too fast or take too low a dose there may be insufficient Pred to mop up the daily build up of inflammation we will flare or get a return of symptoms. (PMRPro has a lovely analogy of a dripping tap filling a bucket which eventually overflows).

IMHO the hardest thing about managing this illness is working out what our bodies need and the goal posts keep moving. Mine do anyway. There seem to be a few Rheumatologists around who will listen to their patients and allow us to manage our treatment. So many of them stick to the PMR mantra and just don't understand that we can be doing really well and then suddenly, it's all change. Sometimes we can identify a reason, sometimes not. I was doing well till Covid and I hadn't thought I was particularly stressed about it. My body thinks different which tells me I am stressed far more than I recognised.

So, dear reader. Learn as much as you can about PMR and how it affects YOU. PMR is a collection of symptoms bearing a label. It is not a defined illness like diabetes. I doubt that any two sufferers have exactly the same symptoms. If taking Pred at night , or at 2am or splitting doses works for you, don't rock the boat. It's your body and providing you understand what you are doing and are not reckless, our doctors should respect that.

The only biological reason that taking Pred at night might be a bad idea, relates to inhibition of the bio-feedback mechanism that has to kick in once we get to very low Pred doses and we need our adrenal cortex to start producing natural cortisol. That is a discussion for another day.........................

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

Do please put this up as a post in its own right. Maybe with the follow-up story - although you will be able to add that when it's ready ...

in reply to PMRnewbie2017

I agree. A good post to have up. 👍

Dambusters profile image
Dambusters in reply to PMRnewbie2017

Thank you. I have learned so much more since coming to this site.

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