PMRGCAuk

Taking Prednisolone at a different time?

Hi, has anyone experimented with when you take Prednisolone, the time of day I mean. The 'instructions' seem to say it should be taken after breakfast, but I am having an awful time with lack of sleep (getting sometimes 3 or 4 hours a night, and having been someone who was lucky enough to sleep 7 or 8 hours a night, pre diagnosis, I am not copying well.) I read somewhere that the steroids are most lively, if one can say that, at 3 or 4 am which is when I am waking up every night. I wondered if one took them after lunch if that might make a difference.

Any thoughts appreciated

Bridget

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I'm looking forward to seeing the responses for this post! I go to bed at about 10:30-11:00, but I am WIDE AWAKE from about 2:00 am!!! I do fall back to sleep, but not till 5-6. Very frustrating!

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That’s because you’re on high doses! Been there, got the t-shirt, should improve as you lower the Pred.

During the bad times I resorted to taking a Nytol every 4th or 5th night (GP’s suggestion) to ensure I got at least one good night’s sleep. But don’t take every night they can be addictive!

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Ahhhhh, of course! Currently on 75mg!

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Wow! That's high.

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I am only on about 17.5 and trying to gradually cut down to 15, will think about Nytol, thanks

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I slept all the time on higher pred doses, but that changed to the opposite as the dose came down. [40mg Nov '16] Somewhere around 17.5mg I began to have trouble sleeping, and this has persisted. Now on ~8mg. I do take occasional Nytol. It helps if I take it only occasionally, but if too often I soon become habituated n then it doesn't work. Same goes for a stiff dram of single malt. (May have this when wake during night. Don't drink alcohol any other time, so is a treat. Works when don't overdo it). Have not tried amytriptilline - am wary of anti-depressants.

At first took pred in the morning, but it would wear off too soon. At some stage changed to taking it towards midnight - bedtime. That seemed more effective, and I have stuck to it since. Timing didn't seem to make any difference to sleep pattern, though as I was sleeping too much at that time, and not now, may consider revising.

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I made the decision to take my prednisone at 2am, but than backed it up to 1am with a glass of milk. Most night I fall right back asleep and wake up about 6:30-7am. Not bad at all, but I’m on 17mg of prednisone, way lower than you. I did run it by my doctor n he was ok with it. The Rheumatologist I had seen laughed at me n said wouldn’t make a difference but I seem to get a little more sleep. Its so frustrating! Good wishes to you n hang in there. Maryanne

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I'm the same as DL, been there.... you need to take them first thing for best effect, sleep pattern will improve as you lower dosage - I was given Amitriptyline 10mg at night as I was near to euphoria, Professor Dasgupta said, and it worked. I didn't like taking them as they were quite strong but they saved me, otherwise I never slept more than two hours and would clean the house from top to bottom every night! I came off them without problems once I got to 4mg daily.

Good luck and hang in there!

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I'm on 15 mg and I take mine after breakfast and I sleep approximately 6 to 7 hours

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Hi Bridget,

You really need the Pred early morning to combat the inflammation which surfaces around 4am. If you leave them to lunchtime you are likely to have a very uncomfortable morning.

See my reply to mamaic1 re sleeping. Hopefully it will get better as you reduce your dose of Pred.

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I take my pred around 8pm because the following day I then have fewer aches and pains. When I took it in the morning, I had to wait till the evening to start feeling better. Seems to work for me.

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Hi, thanks for replies. I went to collect my medication this afternoon, and had a really good talk with the pharmacist, re timing of taking Prednisolone etc. He said he had never heard of anyone taking it at any time other than that recommended, and cautioned that my idea of taking it after lunch, as it might upset the body's natural production of corticosteroids. He also said, that whilst Nytol doesn't have anything in it that would interfere with my particular drug regime (I am alternating between 17.5 and 20 mgs at the moment) he cautioned that if any other more natural solution, to lack of sleep, could be found, it would be better.

I am actually going to a hypnotist, next week, who I went to years ago to get help loosing weight (I certainly don't need to do that having lost 14 pounds + in less than 2 months), and I thought she might make me a CD, as she did before, that is like a self hypnosis CD. I am also trying the Go! Sleep the Cleveland program, which is interesting but not sure it will really do the trick.

But Maryanne, I will think about your way of doing things, if all else fails.

Thanks for people's thoughts. I just find lack of sleep the killer, as I am sure many of us do.

Bridget

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One of the pharmacist's comments you really don't need to be concerned about, At the dosage we take for PMR, and because we are on long term treatment, our own production of cortisol has been disrupted anyway, Time enough to begin considering that when you are at a much lower dose.

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Your pharmacist is right about Nytol, there is no problem with it, but as I said to mamaici1 just take it occasionally- that way it breaks the cycle of sleeplessness but you don’t become addicted. Also try chamomile tea or similar- there are lots on the market to aid sleep!

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Are you PMR pain free?

I had an awful time with lack of sleep when I was experiencing PMR symptoms beginning around 3 am and lasting well into the afternoon. Moving to a split dose of prednisolone worked for me.

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will try that, thanks

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Before I settled happily on a split dose, I tried a single dose at 2 am, and later at 4 am, to no avail. The 2 am dose just brought on PMR pain early in the afternoon rather that around dusk.

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Hi, I have experimented with different times to take pred, and 5am ish, works really well for me. Dorset Lady’s idea. I now wake up naturally at that time, eat a little and then take pred with milk. I usually get back to sleep and wake up pain free around half 7. I am on 10.5 mg at the moment, so perhaps that makes it easier. Good luck.

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Me too, it works very well

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Good point re natural production being disrupted, thanks

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At one point the pharmacist suggested I take in a night. I have done that with coated pred and been ok sleeping (but I have sleeping pills anyway).

But I have noticed that if I take on a morning I wake up at 5ish and think it's body protesting as inflammation builds. I take pred and try and relax for a few hours and often drop off again. tthink coated and uncoated make a difference in terms of how long it is before it kicks in. I am not sure any of this will be helping you lol. Taking coated last thing might get you through that 5am blip though. I would just experiment and see what happens.

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Thanks, just got some coated ones in this last lot of medications, so hopefully that will help.

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I found that if I had any energy at all it came around 6-7 pm when the dosage for the day seemed to kick in . I have now changed to taking my steroids at 10 pm . I have found sleep marginally improved ..The fatigue period is covered while in bed and there is more energy in the day for the most part, though I am currently struggling with trying to taper to 6 mg . Worth trying almost anything to combat the symptoms of this vile illness. Tiny-tim

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I take mine before bed at about 11pm. They are gastro coated so slow release. This means I wake up feeling able to go to work, although I do start feeling worse come late evening. When I first took pred I did so after breakfast and they didn't seem to kick in for a couple of hours. So it's been pred before bed for me for about 10 months!

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I stated taking pred in the morning, then split 50/50 morning early evening. Yhen I tried 2am, I was awake anyway. Now I take coated pred at about 10pm. Like you late evening is the worst, but I get through the day.

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I take mine first thing in the morning after advice from the doctor that they are a stimulant so affect sleep. The only time I didn’t was the first time I picked up my prescription and I took them at 4pm and never slept a wink of sleep.

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Have you experimented with splitting your dose, taking 2/3rds at breakfast and the remaining 1/3rd before bed which will deal with the inflammation activity around 4a.m. which may be what's causing you to wake up, rather than 'lively' pred. The coated pills take around 5/6hours to kick in.

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I split mine in that ratio approx. It seams best for me but when I was taking them all in the morning as advised by the GP I was really in pain with the aches every morning and not getting the benefit of the next dose until well into the afternoon. So now i have 7 mg in the morn after my cereal breakfast and 3 mg at about 9pm with a glass of milk. I still wake up at about 4am sometimes but not every night. If i do wake get up and have a cuppa, read my email then go back to bed and usually get back to sleep quite quickly. On 10mg I'm not totally pain free but enough that I can work through and not be too uncomfortable. I'm petrified of taking too many. It's the first time in my life that I have had to take drugs on a long term basis.

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Thanks to everyone for their thoughts, it sure seems to be something that many of us with PMR have trouble with, I mean the sleeping.

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I split my dose, take 9mg at 5:00 am and 4mg at 3:30 pm. Schedule is not like most humans since I wake up around 3:00 am for the day and don’t nap. I need 1 Advil PM or liquid Melatonin to sleep. Should be a baby nurse with these hours but my patience is totally shot from Pred.

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I have been taking prednisolone for a year, initially taking a morning dose as prescribed, but soon deciding that I needed to boost the effectiveness during the night. I have found that 2/3 of the dose in the morning and the remainder 2 hours before my normal bedtime has worked very well for me. As for wakefulness, as a widow with no one else to consider, I find an audio book is unbeatable. Just trying to stay awake to hear what happens next is guaranteed to send me sound-o,

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A study found that the optimum time to take plain uncoated prednisone to minimise morning stiffness is 2am - so the peak blood level is shortly before the daily release of inflammatory substances into the body and they have no chance to get a hold.

Alteration of the normal body pattern is immaterial above 10mg and a bit of experimentation to find the best time for YOU is often worth it.

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Once I hit 12.5 I started splitting my dose because of stiffness in the am... 7.5mg am / 5mg pm, @10mg 5am/5pm... now at 7mg 4am / 3pm.... February 1st down to 6mg... fingers crossed🤞

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5 months ago I had problems sleeping and was waking up at 8am very stiff until the pred kicked in after breakfast. My GP put me on Amitriptyline - 10mg -and I noted on this excellent forum, that taking part of the pred dosage at 2am would help.

Since then I've slept like a baby and, because I have an enlarged prostrate, have no need to set the alarm, and wake up around 2am to visit the toilet. I'm currently on 17mg and take 5mg at 2am (eat 3/4 of a banana, take the pred with water, eat the rest of the banana and then another drink of water). I then wake refreshed and take the balance of pred - 12mg - with breakfast.

I've had GCA since 2015 and now PMR and have been up and down on dosage - mainly due to rheumologist wanting me to reduce too fast. I had to go up to 20mg to get relief and I'm now reducing by 0.5mg every 2 weeks. When I get to 15mg I'm going to go really slowly.

Hope this helps. Remember that quality of life is the most important thing and reducing pred too quickly can often result in flares and you're back to square one!!!

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It gets better. I started on 40mg on June 9th 2016. Almost no sleep. I take the preds as early in the morning as I can. Usually 6 or 7am, otherwise by 10am I am useless. I got sick of lack of sleep after a month and got a fitness tracker, one that monitors my sleep. Even now my average is only 6 hours and I am down to 5mg. I take my Kindle to bed. If I can't sleep then I read. For the past couple of weeks I have been getting at least 5 hours UNBROKEN sleep during each night. Much better than lots of short sleeps.

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This has been such an interesting thread for me, having posed the question. I am now taking on board a mixture of so many of your ideas. Today I took 10mg after a late breakfast and I plan to take 5 mgs at about 7/8 pm.

I got 6 hours sleep (5 fairly solid hours, and then my husband was snoring); I too use a Fitbit which I find very helpful to monitor sleep. At one time I wasn't getting any REM sleep, not good for one, I understand. I managed to get another half hour sleep, in the car , but as someone said naps dont help as much as a really good night of solid sleep. But this is probably the best night's sleep I have had since starting Prednisolone, 7 weeks ago.

I wondered if the good night's sleep was as a result of helping my daughter out as bar person/waitress etc for 8 hours in a pub, clearing glasses and a lot of walking up and down clearing plates etc, but then I always think I know why it is, when I get a good/relatively good night, and try and replicate it, and bang goes that current theory! (I am pretty achy today but a enjoyed the experience of pulling pints for the first time in my 71 years!!)

But I am coming down to thinking it is a case of experimenting with the times of taking Pred. I am so grateful to everyone for their ideas.

Bridget

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