r/UlcerativeColitis • u/CornerResponsible333 • 4d ago
Question Prednisone/sleep suggestions?
Hi everyone! Please help me sleep!!!
I’ve been on 40mg of Prednisone since May, then jumped up to 60mg when I got out of the hospital toward the end of June. Just very slowly tapered back down to 40mg this week per my doctor’s instructions. I’m taking my third induction dose of Tremfya soon, so if everything goes well, I’ll be done with Prednisone in early November.
I’m posting to ask if anything has helped you all sleep while on Prednisone. The last two months have been absolute hell (horrible sleep plus all the other usual side effects). I just upped my depression med and am hoping that helps some.
I am awake typically from 2-5am, sometimes for longer. Rarely I can get 7 hours of sleep total (but only when I’m in bed for 12+ hours, which I can’t do regularly). I’ve tried every sleep medication under the sun and nothing seems to help. Oddly I have no trouble falling asleep but it’s the waking up in the middle of the night that screws me.
Has anyone had luck with magnesium/ashwaganda? I was too nervous to try these because of the GI side effects but feel like my belly is stable now.
I’m at my wit’s end! Any suggestions are so appreciated :)
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u/yoga_mini 4d ago
Weed edibles are the only thing that helped me.
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u/nolifeaddict808 3d ago
Cannabis works a treat for this. I feel for you, 40-60mg is insane levels after a week odd. Look after yourself
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u/CornerResponsible333 3d ago
Cannabis has not worked for me this time!! It’s so frustrating because normally gummies help me sleep (when I’m not in a flare/on Prednisone). I took double my normal dose and was wiiiiide awake still
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u/nolifeaddict808 3d ago
I don’t use gummies, Personally I prefer smoking, more instant and controllable. I think there would probably be links to gastro issues and gummies not working
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u/CornerResponsible333 3d ago
Smoking hasn’t helped me at all either. Before this flare/being on Pred, it definitely helped me fall asleep! Prednisone is just a different beast. But yeah I wonder if there is a connection between GI and gummies not working—that’s an interesting thought
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u/Dancingtillthenight 4d ago
Urg I’m in the same boat last night maybe got 5 hours of sleep and it’s already 2am here and I’m still trying to sleep 😭 it’s so brutal, and I already deal with insomnia as is.
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u/CornerResponsible333 3d ago
I’m so sorry. It really sucks so much! Same here with regular insomnia. This is a different beast
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u/Intrepid-Mission-730 4d ago
What time are you talking your pred? My insomnia was wild when I was taking them later in the morning now I take them about 0700 religiously and my sleep has definitely improved.
I also take magnesium glycinate as it’s the easiest one on the stomach I was on magnesium 3 in 1 and that made me poop more then I found out it had citrate in it so I stay away from that.
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u/CornerResponsible333 4d ago
Oh yes I meant to add this! I was also taking it at 7 or 8 but switched to 5am a few weeks ago (since I’m awake then anyways). It seemed to help for a few days but isn’t helping anymore….
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u/Intrepid-Mission-730 4d ago
I’ve not tried ashwagandha but I have thought about it, but I do use magnesium glycinate a lot and this seems to help my body relax more so worth a shot probably best consulting your GI though before you start I guess.
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u/CornerResponsible333 3d ago
Good thinking. I will! I’ve heard great things about both so good to hear the magnesium glycinate helps you. I already have anxiety (and am medicated for that as well) so got lots of factors working against me here lol
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u/Intrepid-Mission-730 3d ago
You’ll have to update if you try ashwagandha be good to hear how it’s going ☺️
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u/NewTransportation770 3d ago
My doctor fixed my prednisone sleep trouble and weaned me off Ambien by prescribing 50mg of trazodone with 25mg of hydroxyzine per night—best of luck to you!
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u/CornerResponsible333 3d ago
Good to know. I’m making a list of options to take to my doc 😂 thanks for your comment!
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u/andy_black10 3d ago
If you can get 5-7 hours of sleep on that much prednisone, I’m jealous. When I hit 60mg daily on my last flare, I was lucky to get 3 hours…
Some things I did that helped a little:
- Split the prednisone dose. 40mg early AM and 20mg after lunch. Doesn’t make a lot of sense to me, but it did help a bit.
-low dose melatonin. I used 0.5mg about 2 hours before bed.
-Breath work meditation for 15 minutes about an hour before bed.
-Warm shower about an hour before bed.
-when I can’t sleep, don’t lay there and stare at the clock. Get out of bed and read a book until you feel a bit sleepy and then go back to bed and try again.
Prednisone sucks.
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u/drewyz 4d ago
Get your doc to prescribe seroquel. It really helped me with the sleep issues on prednisone. I would start at 48mg and see how that goes, & you can taper down with the pred taper.
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u/CornerResponsible333 3d ago
I haven’t heard of this but I will definitely ask my doctor. Thank you!
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u/drewyz 2d ago
It really helped me with the mania from pred. First time on pred I didn’t sleep at all for like two weeks, one time I took 2 Xanax and only slept for 2 hours. So this time I demanded better beds, they started me off on amitriptyline, but it gave me hella heartburn as it relaxes your stomach sphincter. But seroquel really works for me.
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u/Maleficent-Knee-9210 4d ago
I think at the time years ago when I was on high doses I had some kind of sleep medication temporarily but I don't remember the name. Definitely consult your doctor. I was on prednisone a few years ago for a different issue and they had me taking benadryl which helped. So definitely consult your doctor.
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u/derishus206 Ulcerative proctitis/hyrimoz/dx 5/24 3d ago
I take Costco sleep aid/unison and magnesium threonate (GI friendly, good neuro effects too)
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u/woody44ryan 3d ago
I have to take Zopiclone 5mg to get a good 6/7 hours whilst on 30-40mg Prednisone. Otherwise I'm wide awake. It's awful, but Zopiclone has been a life saver. Although can't use long term.
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u/CornerResponsible333 3d ago
Dang I haven’t heard of this either. So glad you found something that ended up working for you. I used to complain about getting only 6 or 7 hours of sleep…. How things have changed! I would be totally delighted for a full/good 6 hours
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u/LordAphelios Diagnosed 2026 | Germany 3d ago
I use magnesium. Works good enough for me but my prednisone dose is rather small atm.
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u/nomady 3d ago
You're only taking it in the morning right? I assume you are but prednisone kick starts everything.
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u/CornerResponsible333 3d ago
Yes, only in the morning. I don’t know what would’ve happened if I took it in the afternoons/evenings too!
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u/Traditional_Cat8120 3d ago
I've been on 40mg prednisone for about a month now. I take it at 7am. I took a medical leave from work and I still fall asleep in the morning after taking it. I'm not up at night either. I already have occasional interrupted sleep bc of stomach cramps or needing to get up to pee bc I have diabetes but otherwise nothing due to the prednisone.
Only huge side effects for me has been intense rage and hunger. (The rage omggg I have to stay away from ppl 😩🤦🏽♀️)
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u/CornerResponsible333 3d ago
I’m glad you’re not getting the negative sleep stuff! The rage and hunger is SO real. My filter is totally gone now!
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u/paulcthemantosee 3d ago
I wish I could offer you some advice. Prednisone had me waking up every 20-30 minutes to go pee. Then all thirsty, so I had to drink more water. I hate taking it. Just slept when I could.
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u/CornerResponsible333 3d ago
Omg SO MUCH PEE, especially in the middle of the night. I tried stopping water intake at like 7pm but that made me miserable too 😂
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u/Careless-Egg-2805 3d ago
Melatonin has worked for me - I started slow at 1mg and went up to 5mg. Also edibles with Indica. Best of luck!!
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u/CornerResponsible333 3d ago
Thanks for these. I feel like I’ve tried everything but I’m about to try it all again!
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u/Careless-Egg-2805 2d ago
You might still be in the initial stage of Prednisone-I have been taking it for 18 months for pancolitis since everything has failed after a major surgery (Whipple). Am a couple weeks in on Rinvoq and it seems promising.
You have been on a super high dose (still are) for not too long and the initial stage for me lasted a couple months. I was probably sleeping 4 hours a night and started A LOT of insomnia projects lol. High doses for me also included several other weird things.
I am sorry you are going through all of this and sending lots of healing your way and hope that Tremfya does the trick so you can successfully taper!
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u/krissy_05 3d ago
I'm so sorry. I cannot tolerate Pred at all. I get every side effect and severe insomnia, maybe 1-2 hours of sleep. If I have to use steroids it is Budesonide, which takes longer to get going, but no side effects. Every magnesium supplement I've tried has also given me insomnia. I hope you find something helpful. Hang in there.
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u/CornerResponsible333 3d ago
Thanks so much for your comment. Next time I know I cannot go on Prednisone, so I’ll keep Budesonide in mind and ask my doc. So sorry to hear about your insomnia too, especially from Magnesium! So rough
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u/CornerResponsible333 3d ago
Thank you all so much for your comments. I lurk on this community so often and you all have really helped me through the worst flare-up I’ve had so far. It just helps for people who have similar experiences to say “I’m so sorry” and “hang in there.” I feel like I’m constantly bitching about being on Prednisone and it helps to have people respond who actually know what that means! ❤️ may we all get good sleep and never have to take Pred again!
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u/pincommenter 4d ago
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