I am new to this organisation and new to polymyalgia rheumatica. Currently I have been prescribed 20mg daily prednisolone. Started with 15mg daily but it was not enough. I would love to know from others what they find is the best way to take this drug - all at once, divided in 2 doses, - in the morning, in the evening. My doctor suggested playing around with it a little, but haven't found the right balance yet. I start to get very stiff around 5am. Usually mostly wears off by lunchtime and I'm at my best by mid afternoon!
I'd really like to get a decent nights sleep too.
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bussell
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When you are starting out you should take the full dose at one time. We are always advised to take that dose early in the morning with food. After a while a lot of people do change these things, splitting the dose or taking it in the evening, or even in the wee small hours with a small snack. But I don't believe it's advisable to change this during earliest days. However your doctor has suggested you can play around a bit and if I remember correctly the standard split is 2/3 in the morning and 1/3 in the evening, but even this gets tweaked by individual patients, as does the timing of those doses.
You also have to remember that even when you are feeling better you have a serious systemic disease and need to REST! Always at least as much down time as activity. And it's not just physical activity. i've been on pred nearly six years, although much of that time at a very low dose, and with covid and not seeing people much, I now get together with a couple of friends once a week for about 1.5 hours, and find I am completely exhausted at the end!
You should be given advice regarding tapering by your doctor but we all say never to taper by more than 10% at a time. So if after a month and if your symptoms are as controlled as they are going to be, the optimistic doctor says you can drop by 5 mg - don't! 2.5 from 20 mg is the absolute maximum. Lots of people on here will be happy to help out and offer their own experiences as well. But the lesson we've all learned is patience and remembering "It isn't slow if it works".
Thank you for those helpful words. Yes, I have to realise I have a serious health problem and learn to pace myself. The trouble is that as soon pain abates, you start doing things like changing the beds etc! Am learning the hard way! Thank you again.
I remember having a pred induced fit of energy and deciding to re-organise the kitchen cupboards, then running out of energy and having to go to bed at 4 pm!
Mine are uncoated and I have never used any medication with them. I have always taken them with a meal at breakfast. The problem with a PPI is it, like pred, is also implicated in leading to lower bone density, so best avoided unless really necessary.
Hello HeronNS, I had no idea that a PPI could cause lower bone density. Would you or any other of the wonderful people on this forum say that unless one has stomach problems there is no point taking omeprazole? I have just started taking it as a precaution, after a bit of pressure from the rheumatologist.
There's no point in taking it if you don't need it. Most people manage very well by taking pred with a meal or even with a small helping of yoghurt or a banana or something similar. Only you can tell if you need it or some other kind of stomach protection. Omeprazole was actually never intended for long term use although doctors prescribe it that way, so short term use is probably not a problem. Even if someone needed it in early days when at a higher dose they might be able to discontinue it relatively soon as the pred dose drops. It's advised to taper off a PPI over a few days to avoid rebound acid production.
Incidentally the only time I've ever experienced any discomfort with pred was recently when I had to take an increased dose, up to 10 mg, and only had 1 mg tablets. It wasn't a real problem but I was very happy to get some 5 mg, and now that I'm not rattling with numerous pills I'm fine again. I did not expect that, and it wasn't serious, but I suppose might have become so with more time.
Ah - so if I take omeprazole should I take it close to taking pred? I think from what you say that I will definitely think about coming off it - thank you. The list of pills that I have to order every month is ridiculous and if I can lose one of them so much the better!
I don't have any idea about the timing, surely your doctor or pharmacist should have given some instructions? I'm only guessing, but i suppose it should be within a certain time before taking pred, not at the same time???
No - you take it on an empty stomach 30-60 minutes before (usually) breakfast. The effect then lasts for up to 24 hours. That allows the effect to start by the time you eat - it is absorbed quicker on an empty stomach. Nothing works immediately.
Thank you too PMRpro; this makes sense. Oddly enough I had no stomach problems until starting omeprazole!! Think I will try giving it up and increasing yoghurt etc. I did read though that if one does not take omep. or similar while on pred, you run the chance of developing ulcers after a few months.
Omeprazole causes intolerable adverse effects that cause them to discontinue it for up to 1 in 3 patients. But be careful stopping - it can lead to rebound acid production unless you taper the dose over a few weeks.
What dose are you on? A good start is to take half the dose but I think you need separate tablets, don't know if you can cut then. And keep some gaviscon handy just in case.
Thank you. I feel I have enough on my plate without feeling sick all the time, so I shall get rid of omeprazole - slowly as I am told! Here in Devon the sun is out, regardless of the Beast from the Baltic, so we continue to go forward.....
I have found that yoghurt (plain, 'natural, live, no added sugar etc) has worked for me and, so far in 2years, I haven't had the kinds of problem for which, I understand, Omeprazole is prescribed,
I started at 15 mg and since I would generally wake up at 4am ish in some pain I would get up then, have the omeprazole, wait, have something to eat, have the whole dosage of pred and then go back to bed for a couple of hours and then have a warm bath. As I got better my waking up times got later so now can lie in until 7 ! Best wishes
Thank you for the prompt response. Yes that sounds like me at the moment. Encouraging to hear that you now sleep longer. I'd love nothing more than a good soak in a warm bath, but at present couldn't get in and out. Luckily I have a walk in shower, so I'm clean if not relaxed!
I know that we are all different so my solution may not be yours. I started by taking the full amount in the morning but this left me in lots of pain in the very early hours so for some reason,(probably read it on here as this forum is without doubt the best for advice etc,) I split the dose to 2/3 morning 1/3 teatime. This now works for me.The only time it failed was when my rheumy instructed me to go back to the full dose ........................... never again.I suffer terribly with pred' induced insomnia and would give my right hand for a good nights sleep. I have also done the stupid thing of exceeding my energy levels a few times and paid the price,( thick headed Yorkshire chap but I do eventually get there,lol.)
Truly the best advice is to use this forum as much as you can,the people on here have been there and bought the tee shirt and I for one will always be very grateful.
Don't assume your G.P. or rheumatologist will always know best,much as they do a good job in many cases it shouldn't hurt to question their advice.
This all rings a bell. Sounds helpful advice and I'll try it. The one time I took part of the dose at night I was absolutely wired from 2am onwards, maybe teatime will be better. Thank you.
The usual and recommended practice is to take it all at once in the morning. The inflammatory substances that cause the pain and stiffness are shed in the body in the early morning - about 4-4.30, hence the problems you are having at 5am.
A study found that taking pred at 2am was the optimum time to reduce the early morning symptoms - and there really are quite a few people who wake and take their pred then. In fact, it led to the development of a specially designed tablet that you take at 10pm before bed and it releases all at once at 2am - unfortunately it is mainly available in Europe, it is horrendously expensive in the USA and not available on the NHS. I live in Italy - it is available to me and I never have morning symptoms! If you regularly wake during the night it may be worth trying taking it then with yoghurt or a sandwich if you are that awake. The fact that the inflammation never gets established in the morning often means you may get away with a lower dose - but you definitely have a better quality of life because the morning isn;t wasted waiting for the pred to work.
Thank you so much. This is indeed a steep learning curve! a delayed action pred sounds ideal but clearly out of reach in south London. Maybe as you suggest midnight feasting is worth a try. I have tried taking part dose at bedtime but woke in the early hours, painfree but absolutely wired. I think insomnia is often a problem with pred? I guess the goal is a good night's sleep and not to creep around most of the morning waiting for stiffness to reduce. Perhaps at this stage it's a lot to ask. From all you kind people have sent me I do realise now that patience and rest are vital, and tailoring one's expectations.
Actually, it is possible that the enteric coated version of prednisolone which takes 4-5 hours to be absorbed might work in the same way.
Splitting the dose may work if you take about 2/3 as early in the morning as practical and the balance enough later in the day to carry the effect over until the next morning. Lunchtime may be late enough and then you should sleep OK.
Good morning, started on 30mg in June, now on 10mg. I'm an early bird and take my Omeprazole first, give it an hour to do its thing and then my Pred around 03:00 ish and have no problems. It works for me but not for everyone, like many things PMR related we tend to react differently, all you can do is try the different ideas and then stay with what works for you.
Good advice. Thank you. For the first time in years I am glad I live alone and can experiment with weird hours and activities without a thought for anyone else!
I was diagnosed last August and put on 15mg prednisolone. I tapered from 15mg to 10mg within 3 weeks, and then from 10mg to 7.5mg within 4 weeks. I'm to remain on 7.5mg for up to 2 years My rheumatologist wanted me to take it all first thing in the morning, and still thinks I do, but I split the dose. Two thirds after breakfast, one third mid-afternoon, around 3.00pm. I'm pain free day and night. Sadly I haven't had a decent nights sleep since being on pred but I was a light sleeper before this happened.
Thank you. That is helpful. I can see sleep is an issue for many of us, not least noting the timing of your posts! I can also see that dealing with PMR in the end is a compromise and a sorting out of priorities. But feeling a lot more cheerful. Thanks everyone.
Welcome bussell, there are so many choices and we all experience this illness differently.I was diagnosed end of October and put on 20mg pred. finally reduced in January to 17.5 when my inflammation was under control. Only want to go down gradually as pain more or less under control. I now take 5mg about 2am or nearest time that I wake up for a loo stop. Uncoated on its own. I get up at 7am every morning to do half hour walk with 2 lively labs, then back to bed for breakfast and the balance of tablets plus Omeprazole, vits etc. Only slight problem I have is heart burn late morning but normally clears up after lunch. Plenty of energy, no pain but still don’t sleep well, 2 hours at a time normally. Have found Nytol( bought from pharmacy 1 per night sort) help the most.
Good luck with your PMR journey, we are all with you along the way.😊👍
Dear Granny Jane, Nick Warwick and all the kind and helpful souls who have been in touch,
so far, joining this group is by far the best thing I have done. Apart from a lot of new information, helpful advice, links to other sites etc, the moral support is invaluable. It is so good to learn one is not alone You've all been there and learnt ways to cope and conquer and are generous with your time to pass it all on.
Thank you all so much! Hoping one day soon to be passing on encouragement to others myself.
PS woke at 2am for half my dose. Huge improvement!
Hi Bussell Diagnosed a year ago and put on 15mg. Stress has ramped up the pred to 25mg in December (I can see PMRPro waving a virtual admonitory finger at me as I do not rest regularly). To be honest I don't feel this exhaustion that others talk about as a regular thing. Only very occasionally which makes me wonder if my dose is too high??
I do a 13 mg dose at 2.00am (Sheeps milk live yoghurt for me and avoid Omeprazole like the plague) and 10mg at 2pm split. Am getting little breakthrough incidents of sweating, slight burning under feet, sense of deep compression in the arms and the cramping in the feet and hands (as if I have run out of juice and need WD40 - is this the Pred?) on waking around 7-8am and in the evening but they clear easily with activity and drinking water.
We are all working in the dark to some extent, just not sure what is coming round the corner and indeed what the pred could be masking. I felt a lot of fear at the start as each new symptom emerged but now, with the forum and a greater familiarity with what could happen and how I can work with it (qi gong, exercise, working with stuck emotion, self administered acupressure - we have to keep our blood flowing - blood stasis is one of the main causes in later life of disease anyway; this might be useful to find the points: pointfinder.org/) I feel much more able to cope and more confidence that this is not forever!! So wishing you all the best on your journey. You are not alone!
Not sure if this will help your decision making, as there are lots of variations here already I see.
Started on pred last July. 15mg initially, now 9.5mg
Initially I generally felt ok..ish during the day but would wake at 3.30-4.00 in pain.
On the basis that, as i understood it, the pred takes a few hours to kick in. So it seemed logical to try and pre-empt the 4.00am drama and take some beforehand. So i randomly chose to split my dose 50/50, with half at bedtime and half at breakfast. I have continued that 50/50 split and it seems to work for me.
I did try some coated pills which have a delayed onset, but didn't get on with them at all, so they are at the back of the medicine cupboard in case of emergency only.
Oh and goat's milk yoghurt has very healthy calcium content.
I only use a little when taking the Pred because I understand that the calcium may interfere with Pred and Pred is inclined to send the calcium to inappropriate places in your system.
But once the Pred has been given time to get a head start, I eat lots of yoghurt - for the calcium.
Oh dear - hadn't thought about that aspect - most of us seem to be yoghurt junkies when it comes to early morning Pred snacking!! I'd better check out my sheep's yoghurt - I was taking it as it has less casein that ordinary milk.
I think it's OK to take 'live' yoghurt in principle - if you think of it as a calcium tablet - which we are urged to take to make up the loss of calcium caused by Pred, leading potentially to osteoporosis - it is recommended that we do not take calcium tablets at the same time as Pred - some say because it interferes with its working - but others say because we don't want Pred doing its thing with Calcium..
But everybody says it is essential to have a good intake of Calcium to balance what Pred may be 'using' in the wrong way SO: just to be on the safe side, I only take a couple of spoonsful with my pills - (just to make sure that some friendly bacteria are added to my stomach lining) but eat quite a lot at other times of the day.
I use goat's yoghurt because something in my system doesn't like the cow 's milk that is used. Some say that the milk of grass-fed cows may be OK but, having found goat's milk - and I've also eaten sheep's milk yoghurt - I don't want to waste time experimenting.
If and when I decide to become a vegan,and have to give up 'dairy' I will have to do proper research on whether the plant-based yoghurts can/do provide the friendly bacteria which are the reason for eating yoghurt in the first place!
There's rather more calcium going into the system with the tablets than a couple of spoonfuls of yoghurt which is in turn probably more speedily absorbed into the body than the pred so can avoid its clutches!!!
No Hildalew I certainly didn't get that idea at all!! I just wondered about the dietary calcium and whether that impinged and PMRpro has answered that question. So no worries! Yoghurt snacking in the early hours will continue!!
It isn't thought that dietary calcium interferes too much - the amount and format in the supplements is much higher and the tablets form a sticky sludge which it is thought can coat the pred tablets and interfere with them breaking down and being absorbed.
Thank you for the clarification of the warnings about not taking calcium pills with Pred. But - that is looking at it from the angle of making sure Pred is free to do its wondrous work. Is there not also an argument on our behalf that Pred deposits calcium in the wrong places and so it is advisable to keep the two apart rather than have them go though the digestive system at the same time.
Not really how the uptake works though. I don't think there is any evidence that pred is to blame for deposition of calcium in the wrong place - it happens anyway although ANABOLIC steroids apparently cause it. But pred is a CORTICOsteroid.
Statins increase arterial calcification too - and unmanaged inflammation causes peripheral vascular disease which also involves calcification. It is a really complex question.
But I already have osteoporosis and have been taking daily extra calcium in pill form for years plus an annual infusion. Now what? Is there a timing issue of when to to take what? Is this a question for my GP? I have the feeling that sometimes more informed knowledge is available on this forum than in my local surgery.
The reply immediately above is for Hildalew in reply to her comment, not yours.
The only timing issue when on pred is that calcium supplements whould be taken 2 hours away from the pred - so pred for breakfast, calcium with lunch and another meal/snack, That's all.
I really must check my sources more carefully - or possibly read more slowly! - or stop trying to find simple ways of grasping complicated matters and passing on my misunderstandings to others.
Don't worry about it - I doubt you have lived in a science environment most of your life have you? And it makes my head hurt sometimes despite a medical scientist husband, a nurse and a paramedic daughter to bounce it off
Hi PMRproTo continue the calcium clarification, would you say that calicification is responsible for cramping in the extremities?? I know that taking magnesium is supposed to help for cramps. When resting/ horizontal I get some strange "trigger" toes and fingers that get stuck temporarily and can feel the effect in my calves too. It disappears with activity. This phenomenum was mentioned on a previous thread as being due to the pred and I seem to have only had it since I upped to 20-25mg. Or is it part of the PMR pattern?
i was going to say maybe - until you said it goes with activity. Calcification of arteries in the legs is more likely to result in claudication when walking - not rest pain.
I can only give you my personal experience after 2 plus years. I found it best to take it with breakfast at about 5:30am.m., I am down to 1 and a half mg. None of the tapering has been easy. I still have stiff uncomfortable legs in the morning. I still get various pains, however, if they don't awaken me, I can put up with them. I have given up the hope that I will be the same as I was 5 years ago, and just feel fortunate that I can manage to do as well as this. I also have osteoporosis, so have to try to figure out which ailment is causing me a problem. For me there is a trade off, as I have elevated eye pressure, which prednisone aggravates. Hope you have a super day.
It took me a number of months to nail down when and how to take my uncoated pred dose to alleviate the morning stiffness I was feeling. I started taking the full dose all in the morning around 9am when I’d get up. I would be stiff until after lunch time.
Later I split my dose 2/3 around 2am and 1/3 around 11am. That worked to alleviate the morning stiffness, but waking up at 2am and eating a frozen yoghurt tube or half banana proved challenging. Sometimes I slept through, sometimes I dropped a pill in the dark of night, and it was interruptive to my husband.
As I live in Canada I have no acces to coated pred, so I purchased clear enteric empty capsules online and stuffed my 2am dose into them. I now take this dose around 11pm at night, and the remaining 1/3 dose of uncoated pred tablets at 11am. Works like a charm, I never have morning pain or stiffness. All along I was in consultation with my GP. If I ever get down to 5mg, I may be encouraged to take my dose all at one time to help with adrenal function.
Be patient and keep experimenting...eventually you’ll find the right solution for you.
Hi Bussell, after my 5 year PMR journey, I would say your doctor is correct. Every person, every case is different, but I did learn a few things along the way, do not reduce your dosage if you have any PMR pain, getting off Pred is not a race, but if it was be the tortoise, try not to reduce by more than 10%, use the DSNS method to taper. Good luck, try to stay active, positive and smile it helps. 🙂
Dear All who have replied so helpfullyI am so grateful for your input. Things are improving and you have made me feel much more cheerful. I can see that with patience (and rest - I did not realise that is so vital)a new life is going to take shape. It won't be the same but it will be fine.
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