PMR for about 3 months starting on 15 mg with a scare of GCA when they put me up to 40mg and then dropped me off completely after a week and then back onto 15mg. I have been on Pred 13mg for about three weeks and due to go down to 12 mg in two weeks. Since being on Pred I have had very bad dizziness and my legs are like lead, despite trying to walk the dog each day. I saw a post about splitting my dose and have been to do this. Not sure though how to do it as not feeling any better during the day. I normally take 7 and a half mg with breakfast then 3 and half with lunch and the final 2 mg with evening meal. I sleep OK doing it this way but I normally feel really bad during the morning. Have lunch time dose with a little sleep afterwards and then OKish for the rest of the day. Any suggestions on how I can improve my mornings?
Splitting dose of Pred: PMR for about 3 months... - PMRGCAuk
Splitting dose of Pred
IF splitting is what you need - and first of all you must get the inflammation under control and then look at the pattern of any return of symptoms within 24 hours - then 3 small doses a day probably isn't going to work. You need one dose that is enough to get the morning inflammation boost under control, the second dose is to extend the effect IF that is what you need.
The usual instructions are to take the entire dose in the morning - there is a good reason for that: the new batch of inflammatory substances is shed in the body at about 4-4.30am and then start to create inflammation. The morning dose needs to be enough to deal with that level of inflammation and with a low dose it probably won't be. Does 13mg all at once do that? Do your symptoms then return before the next morning dose is due - the antiinflammatory effect of pred lasts 12-36 hours depending on the person. If the effect lasts the full 24 hours there is no point splitting the dose. If the 13mg doesn't give you the same relief as the starting dose did (I'm assuming that the 40mg wasn't significantly better?) then there is still inflammation left over and that means you have no wiggle room and you need longer at a slightly higher dose to achieve that. Call it spring-cleaning to prepare for a quick dust round each day.
The usual approach to splitting is to deal effectively with that morning dump of inflammation - and that almost always means 2/3 of the total dose as early in the morning as you can - ideal is 2-3am so the pred is ready and waiting at 4am so that the inflammation never gets a hold. Otherwise you need it as soon after 4am as is practical - less inflammation created means less for the pred to do and the quicker it will work. Then the rest should be taken later enough to extend the effect until that time the next morning. Sometimes lunchtime is late enough - but the latest it should be is a couple of hours before the symptoms become noticeable again. You have to find out. But that means you must know your PMR and your reaction to pred - and that means remaining on a stable dosing regimen to find out. Just because someone else does it in a particular way, doesn't mean it will work for you.
Splitting it as you are doing at the moment never gets on top of the inflammation and that is why you feel rubbish until that lunchtime dose takes effect. If 13mg isn't taking you 24 hours - you are probably better with 10mg in the morning and the 3mg later - though it may not need to be as late as the evening.
Thank you that is very useful. Taking at 4 am would I need to eat something and also I was told that Preds keep you awake, so would I have trouble getting back to sleep? Re the return of symptoms. I get up at 8 am and usually feel Ok and it is after I take the Preds that I start to feel rubbish, or is that coincidence I wonder? I have osteo arthritis of the lower spine - so get pain there anyway plus Scoliosis, so sometimes difficult to tell. But I haven't had a return of the leg, shoulder and girdle pains. that took me to GP at the beginning. But as I sit here typing I can feel an ache at base of neck. Seems to come and go - again is that the PMR or something else? It is difficult to tell I find.
It won't keep you awake until it gets into the bloodstream - for prednisolone that takes an hour. And it doesn't keep everyone awake at PMR doses, everyone is different and that is what I mean about you having to get to know YOUR PMR and how YOU respond to pred.
However - there are people who find the pred itself makes them feel unwell. Some of them have found that taking their dose before bed means they sleep through the rough patch and feel better during the day.
If you have a scoliosis then it may be that you also have something called myofascial pain syndrome which tends to affect the back muscles, especially the lats and piriformis muscles just above and below about waist level and the shoulder muscles. It is worse when the back muscles are under stress as they are with a scoliosis pulling at them. It will respond to higher doses of pred - but will also respond to more directed techniques such as physiotherapy and therapeutic massage.
I do suspect that it is the pred that makes me feel unwell, but willing to try different times. I know I did take a largish dose one bed time and couldn't sleep for hours. But if I take in the early hours perhaps that might help or even evening time so I might sleep through it. I do see an osteopath for my back so will discuss with her about the physio and massage. Thank you.
Morning Maudie19, this is a bit of an individual thing, but I take all mine around 02:00 with some Greek Yogurt and a banana. That seems to get me through the day with few/no problems.
Hi there I have pmr/gca and was on high doses from 13mgs I was waking in morning aching everywhere so I decided to split so I am now down to 10mgs reduce .5mgs every 4 weeks and i do this by taking 5mgs normal uncoated preds and then 9pm at night i take 5mgs coated preds and i have found i am not waking up in so much pain and then my morning dose with breakfast 8-8.30am and this has really worked for me so in two weeks i will be down to 9.5mgs. My Rheumatologist told me that two weeks in reducing i will feel a bit yucky/achy but to ride through it and not mistake it for a flare and it does pass i have got used to it. Hope this helps as i know it is different for all of us.
Hi Maudie and Mazwendy. I follow the exact same pattern - 5mg coated at bedtime and 5mg uncoated around 8am - and it works well for me. Sometimes feel a bit "odd" for half an hour mid morning, presumably when the pred kicks in. As others have said, you may need to experiment, but give new variations a chance before deciding they are not right for you. Good luck, you will find a way.
Hi Maudie19, I have felt similar to you and tried a number of variations. PMRpro got it right for me with suggestion of taking pred in early hours. I don't set alarm but usually wake sometime between 2 and 4am and take it then. If I don't wake early taking pred around 8 am still does its thing but mornings are not as good. Trial and error - good luck with it, hope you find what suits you best soon
Well! I awoke at 3am which I normally do and thought - this is it - give it a try! Sat in kitchen eating a banana and then took the whole dose of 13mg. Went back to bed and fell asleep awaking at 6.30 am - something again I normally do. Went back to sleep and awoke at 8 am. It is now 10.10 am and I am feeling fine. no dizziness or heavy legs at the mo. I await with interest the rest of the day and will take the meds again during the early hours of tomorrow. We will see what happens. Thank you to everyone who has replied.
Similar story to my mine..recently had Pred upped from 5mg to 40 to take for 4wks as showing symptoms of GCA, this high dose had me wobbling all over the place for couple of wks till I read about splitting dose so took half dose at 2-3am then the rest at breakfast approx 9am but it still made me feel giddy for most of the day as also took lansoprozole before breakfast to look after stomach which bought on the wobbles more or less straight after taking that first, it was a bit hit and miss in those weeks as to what seemed to work for me..Im now taking 30mg and started splitting to begin with but still found on waking in morning the giddiness was back again but not as bad as on 40..so now am taking all 30 in one hit in the early hours and this does seem to be the right way for me at the moment..I take a small pot of yoghurt before pred and also get off to sleep more or less straight away..I’m considering just taking yoghurt before pred at breakfast instead of lansoprozole but I worry that may be a step to far as I’m in remission with gall bladder problems and don’t want that to flare that up either..hope you find your happy place with your Pred..it’s trial and error for us all but there’s always good advice on here..
If you think the lansoprazole might be adding to the dizziness - since you are taking the pred in the middle of the night, there doesn't seem to be any reason why you shouldn't take the lansoprazole before bed because overnight is when you would need its effect most. And that would kick the dizzy bit into touch and you could sleep through it.
Have to take 30 mg twice daily ..Will try taking Lansoprozole before bedtime rather than earlier in evening...and may just take a yoghurt instead before morning dose instead and see if that helps.
If you are pretty sure it is the lansoprazole, why not ask the GP to let you try a different PPI or even an H2-antagonist like famotidine or cimetidene (used to be ranitidine but it had contamination problems). They are older but almost as good, have a different mechanism of action, so different side effects.
I have some 300mg ranitidine from gall bladder probs but only took one tab a day and at appt with Rhuemy in early May he did say that they no longer prescribe these but no reason given..I haven’t taken them since gall bladder probs disappeared.. but one pack is unopened so may swap to one of these a day or maybe at night and keep tabs on how I feel on waking after my early hours Pred intake..my Gp surgery ask you to phone and queue on day for appt then you still may not get one..so I’ll try a ranitidine and go from there..thanks for your reply your knowledge on PMR/GCA is a godsend.
Ranitidine was withdrawn because an ingredient was found to be contaminated with something that is listed as a carcinogen - probably not enough to matter, less than in the crusty bits on a BBQ steak but rules is rules! So all the manufacturers with the same supplier were affected and it just couldn't be obtained.
Thanks for that info
Hadn't realised that Lansoprozole can cause dizziness! They upped me to one am and pm. Will talk thru with GP when I have my 3 weekly chat.
Hi there do use use enteric coated press in the morning I was but as it takes a few hours to kick in I changed to the normal white preds which start working approx an hour after taking and I have felt so much better through the day. At 9pm I take the other half of coated press as they will kick in approx early hours which the Dorset lady said is when the shedding happens and she was right that is when I was waking in pain, now I do not wake up from pain.My doctor was very pleased with this and backed me 100%
I am now down to
9.5mgs from today for 4 weeks and it's really working for me with not having pmr flares
No, uncoated tablets. I now take the whole dose at 3 am and feel so much brighter now in the morning. No more dizziness. Getting used to eating a yoghurt or banana before taking the 12mg I am now down to. I am changing by 1mg every three weeks. Best of luck.
Does your stomach cope with the plain pred? Another option is to take the whole dose just before bed - it will start to work about 4am which is the ideal.
Hi there yes I take my plain preds with my breakfast and I do take lansprazole 30mgs in the morning. I can't cope with waking early hours to take preds, this has worked so well for me and I am so chuffed that the tapering is working without any flares. It seems so long from coming down from my starting dose 60mgs but with reading this forum and brilliant tips from yourself you can try things yourself instead of waiting 6 months to see the RA consultant🙈.So thanks
I have to take at 3 am as I have tried all other times and the tabs just knock me out until lunchtime. Not good if you have to drive to a hospital appointment! Glad it works for you.
What I'm saying is that with enteric coated it doesn't mean the 3am dose - that is for plain pred to have it working early morning. Enteric coated pred takes 4-5 hours to get into the system, it must pass through the stomach before it can be absorbed and that is why taking it early morning is not ideal for PMR. SheffieldJane (I think) takes e/c pred before bed - working nicely by early morning.
I didn't realise it would take that long. Also I was worried that with taking as I went to bed I may not be able to get to sleep. Yes, I take one Lansoprozole in the morning. I can take one at evening time if I feel I need it.
Ha Ha - I see! Worth a try - will mention to GP for a change of tablets.
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