"Prednisolone Jitters"...is it A Thing...?

I am fairly new to Prednisolone, barely one week in. It has helped enormously but it has also had some odd and unexpected effects.

I often wake in the middle of the night with my body raring to get up and do some gardening, chop some wood or take the dog for a long hike...at 1am...! My mind, of course, has other ideas and a battle of wills ensues which my mind has always won...so far!

When I get up...no later than about 6.30, I have a coffee and often experience a bit of heart rhythm disturbance. It doesn't bother me (my wife has had atrial fibrillation for years) but I get an hour or so of lurching skipped beats until I get physically busy then it settles down.

I have read about adrenals and Prednisolone...without really understanding. I feel as though I have a surplus of adrenaline going on. Is that a consequence of Prednisolone?...I am quite looking forward to dropping my dose soon.

[DorsetLady PMRGCAuk volunteer]

Have a look at this re adrenals - and yes you do have a surplus of cortisol -at the moment -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

An interesting read, thank you. One thing I noticed was that soon after I had my IM Depo-Medrone jab and before I started on oral steroids, I had a series of daytime hypoglycemia episodes. This is something I have experienced on random occasions for my whole life but it hadn't happened for a while whilst the PMR was getting going. We are a type 1 diabetic family, my wife and both my grown-up kids have it (but not me) so I am well aware of it and we have test kits. The steroid jab seemed to spark something off but the oral steroids are not having the same effect so far. Sometimes, however, a low blood-sugar can wake my wife in the night and all it takes is a couple of dextrose tablets for her to get back to sleep, I might try it. I could do a test but that would mean waking up more than I want to. It is all a bit of a mystery to me...!

[SnazzyD]

Sounds about right, but don’t do that 5 mile hike; it’s false energy. It is a surplus and then some, of cortisol. You need to rest when your body and mind are in tornado mode! You’ll settle into it as it won’t feel quite so new and startling. Try to think it is what it is rather than thinking it as abnormal. I felt worst for about 2 hours after my Pred entered my blood steam and it was quite obvious when it did. It will lessen in time but try not to be tempted to reduce quicker than your condition needs.

[piglette]

Steroids can have that affect. My sister in law who had them for cancer wanted to paint the house in the middle of the night! What dose are you on? It gets better as you reduce.

[Hidden in reply to piglette]

Hi...I am on 15mg at the moment...looking forward to reducing!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

looking forward to reducing!

Not until the 15mg has got everything under control…

.. and I sincerely hope you never get GCA if 15mg makes you struggle. 😊

[Hidden in reply to DorsetLady]

What is the GCA issue...my brother-in-law had it and he was very ill with it?

[Hidden in reply to Hidden]

Oh...I see, I would need more than 15mg for GCA...

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Most definitely.. Starting dose 40mg minimum. With sight issues 60mg or higher. Me - having lost sight in right eye pre diagnosis -,80mg for first 2 weeks, then 60mg for next 8 weeks.

But pleased to say have been off Pred since Sept 2016… and doing fine…

If you’re interested - see my profile and/or this -

healthunlocked.com/pmrgcauk...

.. part of more info on GCA from FAQs.

healthunlocked.com/pmrgcauk....

[PMRpro Ambassador]

Yes - all the way through ...

DON'T go for a hike ...

[Hidden in reply to PMRpro]

What would happen if I did? At 4am I feel like a hyperactive teenager with a bellyful of Red-bull. Do you have any tips for dealing with the "false" energy? I will obviously have to give up coffee...my one remaining recreational drug 😒...but, apart from going outside and digging a large hole in the garden, I can't think of a way to get rid of all this buzzing energy...🐝🐝🐝

[PMRpro Ambassador in reply to Hidden]

You run the risk of overdoing it and developing DOMS, delayed onset muscle soreness which is likely to be worse than you would expect for the exercise done and take much longer to resolve than usual - weeks not days. The same applies to digging a hole in the garden of course!!! A gentle walk walk or other exercise might help - but by "hike" I think of a long and relatively strenuous piece of exercise - THAT isn't a good idea.

[Hidden in reply to PMRpro]

I am afraid I was in danger of going up in a blue flash and a puff of smoke this morning...I just had to get out! Walking the dog for a couple of hours isn't strenuous for me, it is my normal. Digging a hole would be strenuous and I haven't done that. My garden has become a mess and we got a tree-surgeon in to do the work that I would usually do by clambering up with a chain-saw. I am taking things much easier than I used to.

[1951grumpa]

thearcanist, when I first started talking prednisone, 15mg. I was only getting a little sleep. I think after a while I got used to it and slept better. One day early on I made the mistake of continuing my normal coffee intake. One morning while bouncing off the wall I realized what I had done and switched to decaf. Only having one cup of regular coffee a day and after that, decaf. It’s a side effect and have to learn how to deal with it. Good luck.

[DogAgilityObsessed in reply to 1951grumpa]

I think the espresso martini at 9:00pm last night was a mistake. I’ve had a really bad night.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

I think the espresso martini at 9:00pm last night was a mistake. I’ve had a really bad night

Highly likely… 🙈..

[Hidden in reply to DorsetLady]

A bold choice...if not an entirely sensible one...!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well - we've probably all been there - certainly know I have.😼

[LindyMc in reply to DogAgilityObsessed]

That has made my day! Thank you. I haven't had a fit of the giggles like that in ages!

[DogAgilityObsessed in reply to DogAgilityObsessed]

Just to say that I made the espresso martinis with decaffeinated espresso last night and have slept through nine hours!

[Hidden in reply to DogAgilityObsessed]

Decaff espresso...I didn't know it existed. Not alcohol-free Martini though!

[KASHMIRI1]

Yes I had that at the outset of steroids. I had considered applying to run the London marathon !!!!! even though I had done any serious running for years. My heart used to go nuts in the evening when I was watching T.V. It gradually changed as I got down the steroid dose.

[Bridge31]

My early Pred days were at the beginning of lockdown . I spring cleaned every room in the house. To try and do that now would be impossible. Even one room would have to be done in stages on a good day. 🤣🤣🤣. Accepting you have to pace yourself is difficult at first. You will get there.

[Miacaro45]

I had practically every side effect listed for Prednisone. What a ride! But, it does get better. Hang in there.

[Hidden in reply to Miacaro45]

Thanks...!

[LindyMc]

Waking up and wanting to do things is what cortisol did in the past (due to chronic stress) and has revisited me sometimes since with prednisolone on those occasions when I ate my breakfast and then did not take the pred directly afterwards, only to discover it sitting in its little pot at lunch time. Big mistake. Taking pred as early as poss, after a V low carb breakfast, mimics what should be happening with cortisol naturally, which aims to get you hit the ground running on waking. Taking it later means that it is telling your body that you are still under stress at bedtime and then you get the 2.30 wake-up call the same as I did before during in covid when I was caring 24/7 for my disabled partner which put us both into shielding, stress++.

[Gimme]

I had a pretty severe reaction at the beginning. On 15mg, I was climbing the walls. I felt terrible. I was jittery after the second day, waking at night like you describe and it gradually got worse over the next fortnight. I was high as a kite and my friend confiscated my car keys. Luckily I had a doctor's appointment the next day and he reduced me to 10mg directly as he was pretty concerned about my state of mind. Then to 7.5 mg the following week as I was still not coping. I've been OK since then and luckily 7.5 mg was enough to keep me more or less pain free. That's not meant to alarm you, just to point out that there is a huge variation in how we all react to prednisolone. The jitters seem to be fairly normal. tbh, the thing that scares me most about all that is what happens if I ever get GCA and need 60mg. I'll need to be kept in a padded cell.

[Hidden in reply to Gimme]

I have some ideas about this and will write about them in a separate post. You are absolutely right to say that we react to things differently.

[Tiggy70]

At what time of day are you taking your Pred? At the onset of my PMR I was told to take the pred (15mg) in the evening and had a lot of sleep issues. Another doctor told me to take it after my breakfast and things greatly improved. 🌸

[Hidden in reply to Tiggy70]

I take it as early in the morning as I can. I know there have been some suggestions of taking it in the middle of the night...but it needs to be taken with food and I am not much of one for midnight feasts...!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Only requires a spoonful of yogurt, not a 3 course meal..but stick to what suits you..😊

[PMRpro Ambassador in reply to Tiggy70]

Who on earth said take it at night? Standard practice is early morning ...

[Karendeena]

Yes, I suffered the same fate and I also have afib (prednisolone making it worse). I am 2.5 years down the line and reducing so slowly down to .5mg Mon, Wed, Fri and guess what? I awake from sleep with jitters and horrible dreams, seems it's just as difficult to get off them 🥺

[Boss302Fan]

Yes, it’s a thing, but didn’t affect my sleep but even though I have a AA+ personally and speak very rapid-fire my GP could visibly notice my increased hyperness (is that a word😄). I didn’t notice it and my wife laughed when I mentioned the GPs comment as she definitely saw the difference.

I was 64 at the time (2019). I do suggest cutting back on the coffee, the shot of caffeine isn’t helping.

[PMRCanada]

At 15mg I was buzzing. Unfortunately I have in to the sense energy and decided to strip wallpaper in the hallway and up the stairs. Wrong! Suffered afterwards. It will likely subside as you lower your dose.