Odd experience with Prednisalone

On Monday I woke up feeling fine, my normal routines were interrupted by the kitchen fitters. As the day wore on I got a bad crushing headache that nothing would shift, as if I had been hit in the back of the head with a cricket bat, then a cap like headache was added to that and pain began to creep up my legs. I went upstairs in desperation to get something for it and to my horror realised that I had forgotten to take Prednisalone that day. Wow I remember now that it is a good drug. It was 9.30 at night, I usually take it early with breakfast in the morning. I took my 10mgs knowing that I probably wouldn't sleep. The pain went within the hour and I did sleep after feeling nightmarishly on the verge of a panic attack as well as shapes blooming before my eyes in the dark, like a 70's disco light show, without the colour. I am puzzled by that reaction and by feeling well on no Pred for hours, then the headache. I am reducing, is it good that I felt fine for about 8 hours on no Pred.? Is what I am experiencing steroid withdrawal rather than PMR?

24 Replies

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  • Pred can act for over twenty four hours for some people and less for others. That is why some people find splitting the dose helps. I forgot to take my pred once and swore it would never ever happen again. Of course I forgot a second time, but I think I have learnt my lesson.

  • Do you have GCA?

    It was a bit scary reading at the severe headache n funny lights.

    Sometimes a panic attack will manifest w lights and sometimes blindness that clears within the hour.

  • I have missed my Pred on two occasions & it took until about 12noon before I realised something was wrong, l was on 11/12mg (can't remember exactly) but I will never forget how I felt, nothing like you did but I became very tired/weak & felt everything was fading away!

    Following the first time l forgot I decided a daily pill box was the way forward so when it happened the second time l was able to check & confirm I hadn't taken them.

    I just refill it once a week & it is especially helpful when tapering so there's no mix up with the different doses on the reducing days.

    Hope you've recovered from it but any issues re your headache I'd see your GP to be on the safe side.

    Best Wishes 💐

  • Something similar with me only I was already using a pill box. I haven't forgotten to take my meds since since setting my digital organizer/calendar to remind me. I also found I needed to set reminders to collect prescriptions (pred-memory...)

  • I have a reminder on my phone for my Calcium & Vitamin D which I take in the afternoon.

    It has to be done I'm afraid, but taking Meds correctly is so important especially if taking ones that can interact with each other!

    Best Wishes 💐

  • Absolutely! My morning Adcal is in front of me as I type (at work...).

    Take care

  • ...and it reminded me to collect a prescription this morning.

    Unfortunately, I encountered a jobsworth at the surgery reception and - so embarrassing - I had a good nark at her ('..go to the prescription counter - it's there for when there's a queue'... 'There is no queue' said I (I summarise). I'm usually scrupulously polite with people serving me.

    I would have apologised, to the very nice practise nurse who served me at the 'correct' counter, but it was the pred talking. I'm now on 32.5mg and I've been short-tempered for only a few weeks. I'm hoping it improves as the dose drops...

  • High doses of Pred make me very excitable & talkative!

    We're lucky at our Surgery that you can order repeat prescriptions online, very efficient! We can book routine Appointments too! Makes life a lot easier!

    Have a good day 💐

  • Yep! Early days my late husband used be always be saying. " for heaven's sake shut up woman" - Fat chance!

  • I can relate to the short fuse. It is oddly liberating to a woman who has been polite since regularly giving up my bus seat to the elderly and infirm as a child. I heard this same me firmly removing a group of cool looking young people from our booked seats on a Greek Ferry, in spite of a mouthy protest from an impossibly pretty Swedish girl. It's the mirthless smile I've perfected - scary.

  • Yes it does. I remember with shame losing my rag with an assistant in my local garden centre cafe one day when I was on 60mg. After I'd sat down, had my coffee I did apologise.....it does happen. And yes it does pass, although sometimes you have to count to 10!

  • I was exceeding short with people even without pred! PMR alone was enough...

  • Aye - the pain doesn't help...

  • PS

    I'm just wondering if you may have had a Migraine, l noticed you mentioned your normal routine was interrupted by the kitchen fitters, that on top of missing your Pred would make for a very stressful day!

    But as I said in my main reply any further issues re your head or eyes see your GP straight away, best to be sure. 💐

  • Hi

    I did the same but went without for 48 hours and it was only a bit of stiffness so thought I was coming down with something .

    Just proves for some of us it stays in our body longer

    Don't think its a reflection on the PMR just proves the inflammation caused by PMR is still active.

    Rose

  • Thanks for all your advice. I do have a pill box with the days of the week on it with bright colours and a separate one for Pred. Dealing with the tapered dose. I wouldn't have known I'd missed a dose without it. I have been told that it is unlikely or that I do not have GCA by the GP who diagnosed me. Based on my verbal account of symptoms only.

    I felt very strong the following day, just as well, it involved a lot of unexpected activity including practically running to the doctors when my grandson broke out in hives after we went swimming. Woke up pain free again. I can't help taking hope from this, but I know I metabolise medicine slowly, I expect I'll crash. But it was a bit like riding a bike without stabilisers for several hours.

  • I used to take my pred as a double dose every 48 hours - I was fine. The antiinflammatory effect lasts 12-36 hours depending on the person so I would bet the headache etc was steroid withdrawal as your body realised it wasn't getting its "fix". It starts immediately, flaring symptoms almost always take a bit longer and then get worse.

  • I was trying to taper my pred to 25mg the next day I was weak, hurt, and tired. Slept for hours.Sticking with the 30mg until I get into a rheumatologist.

  • Doing an 'overnight' drop invariably leaves you prone to getting some sort of nasty reaction, whether it's a full on bout of pain or just a general feeling of yuck! It's your body objecting to a lack of the drug.

    30mg to 25mg is quite a big drop, you could try two smaller drops of 2.5mg instead, a week or a fortnight between. Or if you are really suffering then try a slower plan altogether - most people do that when they get to lower doses anyway.

    You have to learn to be crafty with these illnesses- sometimes you can fool the body into not realising you're decreasing the Pred! Then it doesn't object.

  • As DL says try 2.5mg at a time - much less of a shock to the system. No reduction should be more than 10% of the current dose but even that is too much for some people - if 2.5mg has a similar effect, just do 1mg at a time.

  • Thanks, that makes sense. Any particular merit in taking a double dose every 48 hours?

  • It isn't recommended to use alternate days dosing for PMR as for a lot of people the effect wouldn't last long enough. But it is used in some illnesses because it lets the body have much longer with no pred present and that is felt to reduce the risks of side effects.

  • Yesterday I forgot to take my prednisolone with my breakfast. I started a bad headache/nausea/lightedness about 4 hours later and then I remembered my mistake. Took my 9.5 msg and within 1 1/2 hours symptoms all gone, the white pills had taken them away. First time in 4 years I have missed them - never again!

  • "never again!"

    Everyone says that the first time! It almost always happens again! ;-)

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