Day 2 on steroids...Is this normal?

So i'm on day two of taking oral Prednisolone and to say I feel utterly manic would be an understatement! I've read this is a common side effect, but as the day is wearing on, I'm getting more and more jittery.

I can feel my heart fluttering (palpitations?), I feel dizzy, clammy and my breathing is pretty fast (and i've been sat on my bum all day at work).

I'm a little bit concerned about taking any more today. I couldn't sleep last night because I could feel adrenaline coursing through me, despite being tired at 1am I was still wide awake and hyper. I feel like I am on a lot of cocaine or something!

Normal? Just stick with it and continue taking?

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25 Replies

  • I don't have any answers but how badly do you need the steroids? I'd say ring your rheumy nurse, see what she or he thinks. I took a short course of prednisone once to help me through a very bad patch. I'm very wary of steroids now, though I didn't get manic or have any other bad effects. I definitely have heard that mood swings are a fairly common experience on Pred.

  • I don't have anyone to contact apart from my GP. I'm 6 months into my first severe flare up and have yet to start treatment, I was put on these on Monday night by my GP as a short term measure between me seeing the Rheumatologist and getting treatment.

    Thanks for letting me know that mood swings are quite common.

  • Blimey! I can see why you've been given Pred. Check with GP then, giving you prompt advice / reassurance is the least they can do while you're enduring such a long wait. I now know enough about the drugs I've taken for ages to play 'wait and see' sometimes, but with a new drug (and steroids are powerful drugs) you can't be expected to judge what's happening for yourself.

  • But I've got the notion from somewhere that it's not a good idea to mess about with the prescribed dosage. I suppose that would most likely apply to not taking any more tablets than are prescribed, nor taking them for longer than prescribed, but taking fewer might be inadvisable too ..... I'm just not sure. I'd proceed with caution, but don't suffer in silence, do check with rheumy department as soon as you can.

  • I must say i'm now approaching familiar panic attack territory now, I don't like knowing these is a chemical inside me altering how I feel and how my body is working so I think it's freaking me out. if I call my GP i won't get a message back until tomorrow I would expect, so i've made the decision not to take any more today.

  • Don't panic though.

    I doubt very much that the jitteriness is anything other than a common side effect. I didn't mean to alarm you. Settle down, take a deep breath, consider a walk in the sun etc. but work out your means of transport, best route etc. to A&E just so you can get there easily if anything did happen. Just cover that base so you can then chill.

    Loads of people take steroids, it's the long-term use that worries me.

  • And NRAS helpline number in case you still feel panicky - I'm not sure of their hours but here it is:


  • Hya Shelly,

    Talk to your Rheumy/GP asap.

    I had this same side-effect, I described it as feeling 'altered' lowering the dose sorted me out. I was feeling 'altered' when taking 35mg; Rheumy lowered the dose to 20mg after which I was fine. ( I wasn't stepped down, it was an immediate lowering of the dose to 20mg, but i was fine) I then stepped down as normal and haven't needed Pred since.

    What is your current dose? i'ts probably too high for you.

  • The last time I took Pred I threw a saucepan at my husband's head. Basically they make me fairly nuts, furious one minute and in floods of tears the next. And unable to sleep or eat. So OH has said he's going on holiday if I ever have to take them again. So much sympathy, but do speak to GP as soon as you can as they are not drugs to mess around with.

    Although strangely the steroid injections don't do that to me at all - so now I tend to plead for that instead.

  • Oh my goodness! That's blooming terrible! You poor thing (and poor husband!) thanks for the information.

  • My rheumatologist says that he doesn't like giving oral steroids and only prescribes an injection of Depo medrone when needed. Clemmie

  • You okay? Keep talking if you want. I'm checking laptop just in case you get back.

  • Thank you so much.

    About to have massive rant after seeing the rheumatologist for first time. Horrible man! :(

  • Hi ShellyWelly,

    sorry to hear that you are having such problems with your medication. The symptoms that you mention are listed as possible side effects in the Patient Information leaflet. I have put a link to this information below, although I do not know what dose you are taking:

    As other people have said already I think that you should call your GP. You say that you will not get a response till tomorrow but I think that it is still worth trying to call them and explain your situation and that it is urgent that you get a response.

    Otherwise you can contact your local pharmacist. They may be able to offer some advice as regards stopping your medication and the symptoms you are having.

    Finally, if you are still concerned or have not been able to get a reply from any of the above then try ringing the NHS 111 helpline. They are there for when you need emergency medical help but it does not warrant a 999 call.

    Hope this helps you ShellyWelly. The NRAS helpline is closed now but reopens tomorrow at 9.30am. The number is:

    0800 298 7650

    Best Wishes

    Beverley (NRAS Helpline)

  • Thanks Beverly x

  • Do not panic. Over the last year I have been on many courses of Prednisolone on a reducing scale from 30mg/day . By October last year when they had still not found a suitable treatment for my RD so I was put on a solid dose of 10-15mg /day and have been on it ever since . Although we are now planning a slow reduction over a 9 week period when I am back from Hols. The side effects you talk about are fairly common. I have got over the sleeplessness by taking yet another pill 5 nights a week so that I can function. This has stopped that manic feeling and kept the terrible pain and disability that I was suffering under control. The main upsetting thing that I have suffered is weight gain. If you can get your sleep pattern right though all should calm down. Also I think that your body gets used to it all. Whilst I am desperate to come off the steroids ASAP due to the potential harm to my bones and adrenal glands I could not have functioned at all and would have been in so much pain without them. It is a catch 22. All drugs have side effects, it is just a case of weighing up the benefits against the side effects. talk it all through with your GP. I was just so pleased with the pain relief that I have put up with other problems. Good luck. Xx

  • Sounds like you've had a really rough time.

    Thank you for sharing your experience.

    I wish you luck in tapering off them soon xx

  • had the same effect on me , I was on 30mg and it was like my body was exhausted but my brain wouldn't stop , I was awake at 3am feeling manic ! ( it got the ironing done though ! ) seriously , it's a weird feeling. I think I have slowly just got used to it , although I am reducing the dose now , my moods do swing about too , one day I can be really buzzing and then will be really low and in tears. like everyone else has said if you are really suffering let someone know who is qualified to help. all the best x

  • Me too to all the symptoms you and others describe re mania.

    But are they working for your pain or are you feeling too wired to be able to pinpoint this? Sometimes steroids are given to a possible autoimmune/ inflammatory patient to see how they respond - not psychologically but physically re lessening of pain and swelling.

    I was on them for a month last year and found that as I tapered down I started to feel more aware of the benefits to my aches and pains and at 15mg I stopped hobbling and calmed down a lot simultaneously. My GP did say he would be wary of letting me try them again though - I was so wired at the higher dose and moods were all over the place. Jogging and high one minute, abject despair and suicidal thoughts the next.

    It might really help with getting a diagnosis if you make notes of the way this drug affects you in terms of pain and stiffness as you taper down to a more manageable dose.

    And as everyone has said is very important to be guided by your GP on the dosage though and what to do next. Coming off steroids on your own accord can be dangerous.

  • Hi Shellywelly- YES, YES, AND YES to all your symptoms. First time I was put on Prednisone ( I take it that is the same as what you are on only spelt a bit different ) I was climbing the walls. I too was like a caged animal wanting to get out, I was walking the floors at 2, 3, 4, in the morning because I could not get my system to calm down. My mood even changed and my husband said... you gotta come off this. I had terrible brain fog. I got lightheaded as well and could feel my heart pumping away. TERRIBLE JITTERS! Not sure what it was ( but me, you never know :) ). Called the doctors office and nurse said that it will do that especially if you are not use to it and to keep taking it for a few more days to see If it changed. NOTE.... she said STOP taking if I broke out in rash or had trouble breathing. I did give it a few more days and it did calm down a little. After about three days I still had some of the jitters, hard getting to sleep, but got better. I was only on this for 8 days and then they found out I have DDD= Degenerative Disc Disease and will NOT give it to me anymore. Wish they would since it REALLY does help with the pain.

    Maybe they have you on too high of a dose and can cut it back some until you get use to it. But, just a thought... I would call them and explain what is going on and see if that is what they should do because you certainly do not need added problems.

    Hoping to a better day.


  • Hope you're ok today proudmom. Just a quick message to be clear on prednisolone & prednisone. The two are slightly different, hence the generic name being different (by that I mean they aren't brand names & the they are the actual drug name). Maybe this will explain the differences

    By the way, you may find this website useful for all things RD related as it's a well thought of one in the US. x

  • Thanks re the difference. I am very familiar with RA Warrior. She ( the founder ) is amazing as well. I have gotten very good advice and encouragement from them also.

  • Same here!! I was put on just 10 mg predisone when I started on MTX to help untill the MTX started working! And I was about to go crazy! I broke the pills in half and only took 5mg with out talking to my doc. and that was much better! I said I would never take it again!! I told him if I hadn't lowered it I probably would had gone crazy !!! But at the lower does it still worked fine!

    But, after having to go off my MTX because of bad side effects , I am now back on it again. But this time started at 5 mg . Right now I'm at 2.5mg . And still having some crazy mood swings at times ! I hope to get off soon!! Good luck! PS , I would call your doc first if you can! Gingeq

  • Thank you everyone for putting my mind at ease.

    I can't believe hearing your experiences - what on earth is in these things?! Scary as hell!!

  • I was on them 2 years ago and i couldnt move out of bed, i felt sick ect. My rheumy put me back on them yesterday and im also on day 2 of taking them but this time i cant sit still, ive even managed to paint my small kitchen, i feel like im buzzing, but i also keep eating so im trying to think of something to do instead of eating all the time, i was abit weary of taking them again as i had a bad experience of them a few years back, but im completly different on them now. If ur worried speak to ur GP. x

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