Sleeping 9-10 hours with tapering Prednisone

This would just be a couple of guesses.

I'm currently doing monthly infusions of Actemra. The infusion seems to make me more tired. I sleep right through the infusion.

I have a propensity to wake up early for no particular reason. I schedule my Actemra infusion as early as I can do it --- usually at 7 a.m. The infusion itself only takes an hour but the whole process is closer to 3 hours. I come home and sleep another hour or two after the infusion. Actemra may be part of the problem because it does make me drowsy. Maybe I shouldn't do the infusion so early.

Prednisone disrupts the whole circadian rhythm with respect to your sleep-wake cycle. Extra sleep is probably better than sleep deprivation. Cortisol is what prednisone replaces but oral doses of prednisone aren't a good substitute for the cortisol that your body produces.

Your cortisol level is normally at its highest level in the morning as you wake up. Your cortisol level is low while you sleep. The morning increase in your cortisol level is what helps get you out of bed in the morning. As you wean yourself off prednisone, your adrenal glands need to start producing cortisol again. It doesn't happen immediately.

Cortisol that your adrenals produce needs to happen when you reach 5 - 7 mg of prednisone. If your adrenals don't pick up the slack, your cortisol level decreases and you start to feel excessively tired all the time.

I would guess your cortisol level is on the low side. This is to be expected after high doses of prednisone for an extended period of time. Your cortisol level should improve as you slowly taper off prednisone. They say it can take up to a year after long term prednisone use before your adrenal function normalizes again.

The hormone cortisol regulates so many body functions ... your response to stress is just a small part of what cortisol does. Cortisol regulates sleep, inflammation, mood and almost everything the body does to maintain an equilibrium.

Excess cortisol can cause depression. People who are depressed tend to sleep more. As long as your mood is okay, I wouldn't worry about the extra sleep.

More likely, a lower than normal cortisol level in the morning isn't waking you up.

I'm rooting for you! I hope Actemra continues to work.

There’s a thing called an alarm clock…just Kidding, I wake up early before the alarm, about 7 hours, due to shoulder pain from PMR.

I have an internal alarm clock or maybe it's the sun. I sleep longer on cloudy days.

Even my wife tells me the time she wants me to wake her up. She gets irritated if I wake her up too soon. My wife gets alarmed if I'm still asleep when she wakes up. She gets worried that maybe something is wrong or maybe I'm dead!

We are both retired so most of the time it doesn't really matter when we wake up.

My pain alarm clock was always set for about 3 a.m. That alarm clock must be broken because now I wake up between 5 and 6 a.m.

I just remembered. The infusion nurse gives me 50 mg of benedryl 30 minutes before my TCZ infusion. They say it prevents adverse reactions to infusions. I haven't had any adverse reactions to TCZ. I think the benedryl makes me drowsy... not TCZ!

Taking naps daily

I sleep 7 to 8 hours most nights and many days am so exhausted I nap for 2 to 3 hours. Am on 9.5 mg. prednisone going to 9 next week. Haven't been able to get below 8 without major flare-up. Also on 20 mg. MTX weekly but hate taking it.

Why do you hate taking MTX?

Hi,

For me the prednisone side effect included overall tiredness at times and napping during the day was quite frequent. I attributed it to prednisone either at higher doses or my body reaction to tapering when it didn’t like lower dose. My system did not like prednisone overall and consistently caused various levels of weakness and fatigue throughout the day until I reduced and add biological shots each month. Hoping to get completely off prednisone but don’t want to lose any more hours with having to nap or rest…so tapering slowly and alternating. Just my experience..everyone’s body reacts differently so not sure this is helpful. Hang in there as I know it is hard mentally and frustrating when you need a drug that may be causing consequential side effects. However there are alternatives so if you can find the strength please keep researching and pushing to gain the best quality of life you can obtain for you 😊 we are all in this journey together however unique our solutions may be.

Thanks for your comments. I am finding that Cymbalta is helping with mood and pain. Can you provide more info about the biologic shot you are getting? It would be good to reduce the prednisone more quickly.

My son-in-law developed stage 4 liver disease from it. His docs did not monitor him. It just feels like poison to me but I am really biased.