PMR, prednisone and Poor Sleep or Insomnia

Posted by shonnie @shonnie, Feb 20, 2022

Hi
I was diagnosed with PMR Jan 3 and I am on 20mg prednisone. I have terrible insomnia that seems to only be helped by Tylenol PM which I don't want to take everyrnight. Last night I tried tea with Valerian and it worked pretty well. I didn't feel groggy at all in the morning. Now I have read that it might not be good to mix with prednisone. Does anyone have an answer on taking it with prednisone. I will ask my doctor but not sure he will know.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

suetex | @suetex | Dec 12, 2022

In reply to @maggie14 "What is LDN?" + (show)

Maggie, Low Dose Naltrexone. Lots of good info on the internet and YouTube.

pkalkstein | @pkalkstein | Feb 28, 2023

I am excited that my PCP was willing to prescribe LDN for me. I will be starting on it next week and hope it will allow me to speed up my prednisone taper, among other possible benefits. I am also experimenting with stimulation of my vagus nerve. Fingers crossed for both of these initiatives.
I have had some success in the past with alternate therapies. Some of that is written here:
https://docs.google.com/document/d/1D00NsN1_auN2F0JUOLKC31HUxv9korXcQPO6ZCURXSo/edit?usp=sharing

don57 | @don57 | Mar 4, 2023

This week I met with my sleep doctor, and he prescribed the Ambien generic Zolpidem. I have taken it for the past three nights and I've been able to increase my sleep from 5 or 6 hours to nearly 7 hours. I feel much better now.

redboat | @redboat | Mar 10, 2023

I was diagnosed with PMR on Feb 3, 2023. It's a very severe "presentation" as the MDs like to say.

Due to some scary experiences with excessive inflammation, I'm on 60 mg/day of prednisone.

Has anyone found solutions for insomnia for those of us on high-dose prednisone? I've only been sleeping 4-5 hours a night, at best.

I'm walking about 2 miles each day, and doing simple exercises (squats, bridges, balance) that the PT gave me. But it's not enough to give me a good night's sleep, and I don't want to overstimulate my body right now...

DadCue | @dadcue | Mar 10, 2023

In reply to @redboat "I was diagnosed with PMR on Feb 3, 2023. It's a very severe "presentation" as the..." + (show)

I have taken 60 mg many times. I would only take 60 mg for a few days before I would taper to a lower dose. Yes, insomnia was a big problem at that dose.

Why are you taking that high of a dose for PMR? That is a GCA dose ... not a PMR dose. Ask your doctor but I found that a split dose of prednisone really helped control inflammation better and helped me sleep better too. I took 40 mg in the morning and 20 mg in the evening.

Splitting any dose so that it was 2/3 of the dose at 4 a.m. and 1/3 of the dose at 4 p.m was what I did. Pain would wake me up at 4 a.m. so I didn't have to set my alarm. I think it was my body's way of letting me know it was time for some cortisol.

Circulating cortisol levels should be at their highest at 8 am in morning. Taking the larger portion of your prednisone dose between 3-4 a.m. will result in your cortisol level being highest at 8 a.m.

There is a secondary smaller increase in circulating cortisol levels at approximately 6 p.m. Taking the smaller portion of your prednisone dose at 4 p.m. will cover that secondary increase in your cortisol level.

You really can't replicate the cortisol release that your body does when we aren't taking prednisone. The body's natural circadian release of cortisol is extremely complicated but the following begins to describe it.
https://www.healthline.com/health/cortisol-and-sleep
When I took high doses of prednisone, it seemed like I had no need for sleep. Eventually sleep deprivation took hold and I slept 24 hours. I also took some benadryl before going to bed and that helped me sleep..

Taking prednisone disrupts the circadian rhythm of many bodily functions. Insomnia didn't last the entire time I was taking prednisone. The body has an amazing ability to compensate for all the bad things we do to ourselves. Hopefully, when you maintain a lower stable dose of prednisone - insomnia won't be that much of a problem.

redboat | @redboat | Mar 11, 2023

In reply to @dadcue "I have taken 60 mg many times. I would only take 60 mg for a few..." + (show)

@dadcue

I have taken 60 mg many times. I would only take 60 mg for a few days before I would taper to a lower dose. Yes, insomnia was a big problem at that dose.

Jump to this post

Thanks for your comments on spacing ingestion of prednisone throughout the day. I've been spacing it evenly, with 20 mg at 9am, 20 mg at 6 pm, and 20 mg at 3 am.

I'm going change now and experiment with taking only 10 mg in the afternoon. I'll take at least 20 mg at 3 am, and the rest after the sun rises.

I do want to more closely the diurnal patterns that cortisol naturally takes in the body, as you suggest. I may go full blast as you did, and take ⅔ of my total dose at 3 am and ⅓ at 4 pm.

You are right, 60 mg is a "GCA dose", even though I "only" have PMR. Unfortunately, my inflammation levels are extraordinary for PMR (CRPs about 10x what most with PMR experience). The ER doctors and my rheumatologist say I have a "rare and unpredictable presentation". I've had more than my share of medical attention. The medical facilities and local expertise are quite good here in San Francisco. I think 60 mg is warranted for now.

teddyz | @teddyz | Mar 11, 2023

In reply to @redboat "I was diagnosed with PMR on Feb 3, 2023. It's a very severe "presentation" as the..." + (show)

I found 2 that that have helped. Trazadone is an old school anti-depressant that doctors often give for insomnia. It did help me through some of it. It might not work for everyone.
The other thing was just to change my attitude about it. I love sleep and normally get very cranky when anyone interferes with it. When I had to go on 60mg of Prednisone for GCA, I decided there was no use fighting it. When I was up at 2 AM, I just started working on projects that I never seem to have time for. An hour or two later, I'd go back to bed again. My mind and body were reset and ready to sleep again and I got a lot done! Every time my dose got lowered and I gained a little more sleep back I would celebrate the progress.
Hopefully, you'll find something that will work for you. And just know that it's temporary.

don57 | @don57 | Mar 18, 2023

In reply to @redboat "I was diagnosed with PMR on Feb 3, 2023. It's a very severe "presentation" as the..." + (show)

Three weeks ago, met with my sleep doc and he prescribed Zolpidem, which is the Ambien generic.
The quality of my sleep has improved, and I gained about 30 minutes. Now, I'm sleeping about 6 hours.
Currently at 20 mg.

don57 | @don57 | Mar 18, 2023

In reply to @redboat "I was diagnosed with PMR on Feb 3, 2023. It's a very severe "presentation" as the..." + (show)

redboat | @redboat | Mar 18, 2023

In reply to @dadcue "I have taken 60 mg many times. I would only take 60 mg for a few..." + (show)

@dadcue

I have taken 60 mg many times. I would only take 60 mg for a few days before I would taper to a lower dose. Yes, insomnia was a big problem at that dose.

Jump to this post

Followed your lead and went to ⅓ night and ⅔ morning prednisone dosage split. Had my best sleep (6 hours) in a week. Thanks.

I used a different timing:

3 am ⅓ dose
10 am ⅔ dose