Pred taper questions

Hi,

Yesterday I finished my first long-course of pred. It did the trick in terms of stopping a bad exacerbation and clearing up the ongoing inflammation in my lungs.

However, I had pretty bad side effects on the pred, but I feel like I'm also having them in coming off it.

My dosage/taper was 2 weeks on 40mg, 2 weeks on 10mg and a week on 5mg. I finished yesterday so I'm now down to zero.

Does anyone have experience of how long it takes to feel 'normal' again on this kind of taper? I'm aware that the pred is still making its way out of my system, so it won't really hit me for a day or two more, and already I feel pretty ropey, both physically and in terms of anxiety and so on.

Grateful for any thoughts...

C

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Hi and welcome again!

Hmm I am no expert here obviously, and I understand from the AUK nurses when I rang them with a similar question last week that it can be complex and depend on how many courses you've had in the last year etc - they said my GP would need to advise because it was so individual.

However, 2 weeks on 40mg then dropping to 10mg seems like quite a big drop...when I was on a similar dose (2 weeks on 40mg, not been on pred for ages), I tapered off much more gradually so starting off reducing 5mg every 3 days until I got to I think 25 or 20mg, then 10mg every 3 days until I came off - so I was on it for about the same time as you but didn't drop by nearly so much. With this latest course I'm just finishing I was a week at 25mg, didn't work, up to 40mg for a week, then reducing all the way by 5mg every other day.

I always always say this and feel like I'm advertising for them lol, but the AUK nurses might be able to help/talk through the complexities which your GP and/or consultant might not have time for. They might though, as they did with me, tell you to go back to your GP - they said to me there is nothing wrong with using an appt to discuss pred tapering as it is important and also an individual thing.

Hope this helps...

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Thanks Philomena,

Thanks for the welcome too! (I've been here before, won't say any more than that, I'm sure you can join the dots, shame there's no PM function.)

I agree that possibly the drop from 40mg to 10mg was too rapid - I got ill about a week after dropping to 10mg and ended up in hospital, not breathing related, and was quite unwell for a good week. My GP arranged the admission when I was ill and her thought was that it was hard to tell whether it was too much pred or too rapid a drop, so we didn't know whether to reduce it as fast as possible or step back up again. The hospital couldn't figure out which way to go either, so we decided to stick with the original taper given by respiratory.

I'm hoping to stay off it now for the long term. I'd had 2 short (7 days at 40mg) courses in the run up to Xmas too, with about six weeks between them.

I've had such a bad experience this time that if I can avoid taking it in future I definitely will, not that anybody ever *wants* to take it, but I'd have to be pretty much left with zero options other than pred to even consider it. That in itself is a bit scary because burst courses of pred have been my life saver over the last couple of years, but I'm hoping that other treatments will reduce my need for it too.

Are you having many side effects coming off it?

C

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ah I see - I will work it out exactly I'm sure - shame about the PMs yes! Was it fairly recently you were on before? I thought you sounded somehow familiar but trying to put my finger on it.

Crossing fingers you can stay off it, though hearing things about pred reductions from others I do wonder if it was just the steep drop that was at issue.

I don't think I'm having side effects but I am really bad at telling whether I am or not! I kind of crashed a bit on Friday and felt horrendous, needed to spend most of the day in bed then early night, but I think that was partly due to burning the candle at both ends earlier in the week when I don't yet have sufficient energy for it. I'm also, oddly, getting hungrier as I reduce the dose - normally I LOSE my appetite on it, oddly enough, rather than getting the munchies like most people.

I am getting a lot of palpitations and racing heartbeat atm but I'm pretty sure that's the LABA/SABA side effects coming back for some reason. Very annoying but probably not related to the pred particularly.

Hoping you feel better soon.

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I'm also, oddly, getting hungrier as I reduce the dose - normally I LOSE my appetite on it, oddly enough, rather than getting the munchies like most people.

That matches with my experience - I only started to get hungry as the dose went down, most obviously when I dropped from 10 to 5. That has worn off now though.

I am getting a lot of palpitations and racing heartbeat atm but I'm pretty sure that's the LABA/SABA side effects coming back for some reason. Very annoying but probably not related to the pred particularly.

I've noticed that as well, I'm unbelievably shaky at the moment, despite using significantly less reliever than normal.

Oh well, hopefully it'll wear off quickly and I'll never have to take the damn stuff again!

C

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I've noticed that as well, I'm unbelievably shaky at the moment, despite using significantly less reliever than normal.

Oh well, hopefully it'll wear off quickly and I'll never have to take the damn stuff again!

C

Yes - I noticed it more when I was taking LESS reliever! Still more than normal, but found it weird that I wasn't getting these effects when I took 30+ puffs a few weeks ago. Maybe because I was too busy thinking about my breathing at that point...

Crossing fingers for you re no more pred.

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I've noticed that as well, I'm unbelievably shaky at the moment, despite using significantly less reliever than normal.

Yes - I noticed it more when I was taking LESS reliever! Still more than normal, but found it weird that I wasn't getting these effects when I took 30+ puffs a few weeks ago. Maybe because I was too busy thinking about my breathing at that point...

Crossing fingers for you re no more pred.

Thanks P, you might be right that it's partly that when the breathing is very bad we're less likely to be unloading the dishwasher - or whatever other activities make it so obvious that we're shaking like crazy.

When I was in hospital for the pred side-effects they actually asked if I was withdrawing from drugs or alcohol, because my shakes were so bad.

C

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I'm also, oddly, getting hungrier as I reduce the dose - normally I LOSE my appetite on it, oddly enough, rather than getting the munchies like most people.

That matches with my experience - I only started to get hungry as the dose went down, most obviously when I dropped from 10 to 5. That has worn off now though.

C

I get hungry as the dose goes down too. I guess my brain goes from concentrating on the breathing to oh what can I eat now, my body has been working hard and needs refuelling. I sometimes lose weight when on pred as a result of using lots of energy to breathe/fight infection and not being well enough to feed myself properly/go to kitchen and get food.

xx

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I get hungry as the dose goes down too. I guess my brain goes from concentrating on the breathing to oh what can I eat now, my body has been working hard and needs refuelling. I sometimes lose weight when on pred as a result of using lots of energy to breathe/fight infection and not being well enough to feed myself properly/go to kitchen and get food.

xx

Thanks lou - I usually lose weight on it as well, so it's been kind of unusual for me. It's a good point that usually for a burst course I'm not really in a place to think about eating anyway.

This kind of felt like my blood sugar was crashing as well, proper wobbles.

That's gone now, and the muscle aches (I felt like I'd been running up mountains) have gone. I'm exhausted and very anxious and fed up - can't imagine how I'm going to drag myself to the appointments I have this week, but I'm sure I will. I realise that probably this is just the classic pred anxiety, but without the detached sense of well-being that it also usually gives me.

C

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Hi,

Yesterday I finished my first long-course of pred. It did the trick in terms of stopping a bad exacerbation and clearing up the ongoing inflammation in my lungs.

However, I had pretty bad side effects on the pred, but I feel like I'm also having them in coming off it.

My dosage/taper was 2 weeks on 40mg, 2 weeks on 10mg and a week on 5mg. I finished yesterday so I'm now down to zero.

Does anyone have experience of how long it takes to feel 'normal' again on this kind of taper? I'm aware that the pred is still making its way out of my system, so it won't really hit me for a day or two more, and already I feel pretty ropey, both physically and in terms of anxiety and so on.

Grateful for any thoughts...

C

It can take a while to feel normal again, but I find it has many contributing factors; how long a course it has been, the dose, the taper, how long a gap since the previous course, etc. and we all have different effects from meds so wouldn't like to say how long it will be for you. Just that if this is the longest course you've had then you'll probably feel worse than you have previously when coming off pred.

Anyway, rambled enough. I hope you're over the withdrawel symptoms soon. x

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It can take a while to feel normal again, but I find it has many contributing factors; how long a course it has been, the dose, the taper, how long a gap since the previous course, etc. and we all have different effects from meds so wouldn't like to say how long it will be for you. Just that if this is the longest course you've had then you'll probably feel worse than you have previously when coming off pred.

Anyway, rambled enough. I hope you're over the withdrawel symptoms soon. x

Thanks Lou, I guess this is the first time I've really had side effects or withdrawal symptoms that weren't counter balanced by huge improvement in my asthma at the same time. The improvement has happened but the dramatic bit was a few weeks back and I've had most side effects during the taper, so the novelty of breathing has worn off!

Not that it isn't nice to breathe - it's very much appreciated, I just hope that it lasts and I don't have to do the pred deal with the devil again for a good while.

C

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not seeing my consultant till next tuesday - i'll check then if its still bothering me, but does anyone get really dizy/vertigo type feelings when dropping pred quite rapidly? (also gone from 40mg to 10mg in one step as my cons really wants to try to get me off it - and actually nurse forgot to give me one days worth as i was asleep for morning meds and she forgot to come back round - not the most reassuring thing ever but there we go) im not falling or anything but i do feel like i am spinning round or something - never had it before from stopping steroids but have had it from stopping other meds in the past!

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I hadn't realised it was the pred because I had so many other things going on previously when I was dropping. But today I had vertigo and a migraine that was definitely just pred withdrawal. Grim.

So - you're not alone there.

Good news that your consultant wants to get you off it - just hang tight because the impact on your body is kind of interesting I found!

I think if you're on a highish dose then missing one dose in the middle probably isn't a disaster as the half life is long enough that all the previous doses for the last week or so are still making their way out of your system. (The biological half-life is 18-36 hours I think). So that's probably why you didn't implode when the nurse forgot your dose - ridiculous that that can happen though, the whole point of the various checks and balances is that they can't miss a patient!

C

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glad its the pred and not a delayed reaction to stopping my other med or starting a ridiculously high dose of iron tablets. wish it didnt have to happen at all though! Im pretty good at tolerating dizziness, i get to a 'ridiculously' anemic point before i even think that the light-headedness is worth mentioing (the nurse rechecked my iron levels as she refused to believe i could stand up and not pass out! lol!) i HATE iron tablets with a passion so am always reluctant to go on them, although im hoping that the extreme nausea i get on iron will help me lose some pred weight so every cloud

nurse was really nice but not very with it, she missed the fact that a patient who had been just 'a bit odd' (in the way that some elderly people are - not dementia or anything, just a bit quirky) had started full on hallucinating tiny crocodiles, and she was sat there asking talking about it and i was like ""do i mention this to someone!?!"" eventually i asked the nurse who did my obs about it, and she mentioned it to the doc who made her put her cpap mask back on...not really sure what was going on, but a bit worrying that nooone picked up on it!

hopefully ill be off pred completely in 4 weeks. I think my cons is going to tell A&E not to up them (i assume if im admitted he'll decide what to do, but glad that A&E docs dont get to decide as they always increase me right up to 40mg) and he wants to do that test to see if your adrenal gland is still working once im off. if it wasnt would i have to have pred forever? long half life might explan why the inflammatio in my lungs was low even on 10mg of pred (after a few days at 40mg) i assumed it was short-ish although i knew you could go a day without it coz my GP discussed what to do if i was sick after meds two days in a row (but said one was fine)

really pleased to be stopping the pred, it always makes me feel really run down, and lethargic - i didnt even notice how bad it was until i got down to 2mg a couple of months ago. But then as soon as they increased again i started thinking 'oh! this is what its like when you can breathe!!!' so annoying, they need to invent pred without side effects!!!