Coping with larger prednisone dose over several months and mental health
January 31, 2023 11:13 AM   Subscribe

I have developed a rare disease which causes pockets of inflammation throughout the body. I have developed these inflammations in my brain stem. I have been feeling mild neuro symptoms for a few months now and my neurooncologist (it's not cancer) wants to treat the disorder and shrink the inflammation in my medulla with a course of prednisone. The course starts at 100 mg a day for the 1st 2 weeks and titrates down 20 mg every 2 weeks, all over the course of 16 weeks. I am also taking 2 accompanying meds to avoid pneumonia and stomach ulcer.

I also have diabetes type 2 which is pretty well controlled. My last 3 or 4 A1C results over the last 2 years have been 5.7 to about 6.2.

My PCP wants me to start Ozempic to help control the inevitable blood glucose problems, along with doubling my normal dose of Metformin I've been taking for many year (from 1000 mg once a day to twice a day). I already take so many pills and now I have to take SO MANY MORE! Also, I have been instructed to immediately begin twice-daily finger sticks to check my glucose. And the Ozempic injection once a week. So many needles!

I also have had life-long issues with depression and have currently been in a depressive cycle for several months. I am treatment resistant so don't take medication. I meet with a therapist regularly. And I have developed problems with anxiety over the last 3 years or so and will take clonapin as needed; sometimes once a day over a week or 2, but usually far less frequently, like once a month.

I have now been on this regime for a little over 24 hours and I'm already freaking out. I had a mild panic attack yesterday and more low-level anxiety and despair the rest of the time. I got very little sleep last night, my first night on prednisone. My PCP told me it was OK to take the ambien that I use occasionally. And I did, but the ambien didn't touch the insomnia. I was awake all night with brief periods of very light sleep. I CANNOT live like this for the next 16 weeks.

I don't really have any social supports to help me. I have to figure out how to cope with ALL THE THINGS I HAVE TO DO. Along with the severe emotional and mental health difficulties. And the lack of sleep. And probably gaining even more weight (to my already existing obesity).

And tips or tricks to help cope with this? Either stuff about the meds or about how to cope emotionally or with insomnia?
posted by primate moon to Health & Fitness (10 answers total) 3 users marked this as a favorite
I haven't taken high-dose prednisone but know someone who currently is, and has had to do a couple rounds. For them, the sleep problems are the most difficult thing. They absolutely need medication to get any sleep. They are rotating between benadryl, unisom, Tylenol PM, and recently started trazodone. Based on what I hear from them, I would push hard to find a drug that helps you sleep. Even with drugs, 4-6 hours of sleep is usually their max.

They also said that the sleep side effects get much better once the dose is 60 mg or lower a day. So maybe it would help to focus on getting through the first four weeks rather than being overwhelmed by all 16?

They also have found that the fatigue builds up and then they sleep a bit more.

Kindly, do you really need to do all the things? It seems you need this medication for your health, and you need your health to be there to live the rest of your life. If there are places you can cut back that might take some pressure off. Obviously I am not your therapist but maybe your therapist can help you make a plan?
posted by medusa at 11:25 AM on January 31 [4 favorites]

I have a family member on a similar regimen. The combination of trazodone and melatonin has been very helpful for sleep.
posted by rednikki at 11:51 AM on January 31

When I was on a high dose of prednisone, it was one of the few times I've taken advantage of the fact that I live in a state where marijauna is legal. I was still only able to get about 6 hours of sleep, but without the pot it would have been way less. I also had to cut back on my caffeine intake, because having my standard two cups of coffee gave me the shakes so bad I could barely hold a pen.
posted by shornco at 12:23 PM on January 31 [1 favorite]

When I had a longish need for Prednisone, I cut out caffeine completely. Consequently, I did not have insomnia.

One of the things that got me through the Prednisone was the fact that it had a really clear time frame. I could look at the calendar and tell myself that every pill taken was bringing me closer to the day when I'd be off them completely.
posted by BlahLaLa at 12:30 PM on January 31 [2 favorites]

holy crap, that is a lot of stuff. my first question to your doc would be: is it a huge deal if my glucose goes up for the 16 weeks of steroids? ozempic plus more metformin seems like a LOT and you might not even have glucose issues. ozempic can be really hard (it was for me, to the point i had to stop taking it) and a metformin increase could lead to GI issues. i would definitely bring this up with your doc, or maybe see a different one. 4 months of higher glucose levels might be an acceptable trade off for you to not have to deal with all this extra stuff (it would be for me if i was a well controlled diabetic, perhaps not if i was still wildly uncontrolled).

prednisone is a tough drug. for me, it causes anxiety and after 2-3 days intense pain in my joints that lasts for about a week after treatment ends. but, i find if i go into it knowing it will suck, and has a set end date, that helps a little.

if you do do the ozempic, it has the teeniest needle ever and you will barely feel it, i promise.

i'm sorry you have to deal with all this health stuff. it can be super overwhelming especially if you don't have someone to help. i wish you the best.
posted by misanthropicsarah at 12:54 PM on January 31 [1 favorite]

For me the prednisone insomnia/anxiety/irritability is worst for the first three days and then lessens, even if the dose hasn't started to taper yet. So this is likely to be the worst of it. (I take short courses every so often to manage autoimmune flares, and spent a summer on 5mg/day that ended up having more side effects than benefits. I'm not certain this is gonna be sustainable for you and I strongly encourage you to try to take notes/records of your side effects.)
posted by restless_nomad at 1:24 PM on January 31 [1 favorite]

I had a high prednisone course last year and had a similar experience as restless_nomad--the insomnia was terrible for like 3-4 days and then became much more manageable. I switched from 12 oz. of coffee within 2 hours of waking to 12 oz. of caffeinated tea (to stave off withdrawal headaches) and no other caffeine otherwise in an attempt to help me fall asleep. (I'm not *particularly* caffeine sensitive but lowered/eliminated caffeine does make me a bit sleepier for a couple of days until I adjust.) I wasn't on metformin when I was on prednisone so I don't know how they interact. Metformin has drastically reduced my appetite but prednisone turned me into an angry eating machine. The anger-eating continued for most of the duration of the tapering--like right up until the last 2-3 days.
posted by MagnificentVacuum at 2:52 PM on January 31

It has been a long time since I did high doses of predisone, but the advice you have gotten above is good re medications for sleep and for cutting out caffeine. This won't be forever, even though 16 weeks feels like forever. As you start to taper you have some better sleep to look forward to. Finally, I wish I'd known this nickname for prednisone while I was on it: The Devil's Tic-Tacs. A little humor would have helped me worry less. Keep asking if this doesn't get better as you drop from 100 to 80 or 60. Lotta people here with experience.
posted by Gotanda at 8:14 PM on January 31

You didn't indicate if the twice-daily finger sticks were a source of stress, but if so I highly recommend a continuous glucose monitor (CGM) such as Libre2, if your insurance covers it. I rarely have to stick myself any more, which has been a relief because the painful finger jabs were so stressful. Might be one less bit of unpleasantness to deal with.
posted by Serene Empress Dork at 11:14 PM on January 31

A family member was on prednisone, experienced the lack of sleep and subsequently had psychotic episodes. They spend some time in a psych ward before they were able to taper off. Since this seems to be a rare side effect, it took some time for the doctors to acknowledge that it was a drug induced issue and not just a standard mental health problem. It is unlikely that this will happen to you, but it is something that you and your medical team/ support network should be aware of so that they can adjust the dose downward if necessary.
posted by oryelle at 5:25 PM on February 1

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