Ive been on oral pred since 1st August, and have been slowly reducing it, initially by 5mg a fortnight and then more gradually. Im now down to 5mg and feeling terrible. Tired, no appetite, gastrointestinal disturbance, and whats worse the last couple of days I've been an emotional wreck. Angry, very very tearful and just generally feeling like a total fruit loop..
I've never had these problems with coming off pred before, but I guess there is always a first time, does anyone else experience this?
I was on pred for three months following an asthma attack in June (never had an attack before) and have slowly tapered down but all the symptoms you have described are what I experienced also. When I've trawled the internet there are a lot of people who seem to experience degrees of these symptoms. The only way to cope I found was to rest and try to relax as much as possible - found the TV a welcome distraction from feeling lousy and teeth grinding! If you stick with it you will come off them but it does seem to take a while to adjust after finishing taking them or can do I suppose again it depends on the person, duration etc. Hope you feel better soon.
Hi Lynda,
All of the above and more I'm afraid! :-S
Pred reduction/stop is evil I'm afraid.
As Ad said, rest, do things to take your mind off it and if all else fails just admit you're behaving like a fruitloop but you can't help it so everyone around you will just need to live with it!
Seriously, its horrible so take care xxxx
Tired, no appetite, gastrointestinal disturbance"" I get these too plus a few more, no energy, muscle aches and joint pains everytime I reduce/stop pred. I get them to some greater or lesser degree depending on how long I've been on pred, reduction rate, how high the dose has been and how recent my previous course was.
Hope you feel better soon
Guys thank you so much. I was really starting to think I was headed for the funny farm, have been sitting on the sofa in tears half the day for no apparent reason, which isnt like me at all. Horrible though it is, you have all reassured me Im a normal fruit loop AD, I forgot about the teeth grinding, terrible isnt it!?
Thanks for your good wishes, I will persevere - and hope that none of you are having to deal with it right now...
Lynda x
to hear people are suffering with this but I did have a bit of a lightbulb moment - do other people find these symptoms can happen for a bit after you stop or just while on it? They sound familiar but I've been having some of them after I stopped, after tapering down from about 3 weeks at 40mg to nothing over a couple of weeks. Didn't think it could be that when I'd stopped completely...but maybe it is?
For some reason even after being on this forum I find it hard to measure this against 'normal' - this is only my second pred dose and have to say this time it did work on the lungs, pity about the other evil side effects. My teeth are still quite sensitive, am hoping that will go soon as it's a small but annoying thing.
Philomela- After stopping short courses I'll usually be suffering withdrawal symptoms several days to a week or so later and I find the muscle weakness/pain can linger for quite some time, especially if I've had longer courses or I've had a couple short courses close together.
Blimey Philomena, that sounds like a VERY fast taper! The fastest I ever taper is by 5mg per week, but its usually a fortnight between reductions. Even at 5mg per week from 40mg that would take 7/8 weeks. I would get terrible withdrawal effects doing it that fast. As it is, Im just a fruit loop hahaa, but I havent had any muscle pains or weakness, just the emotional wreckage
My doc would have a pink fit if I reduced that fast lol. I hope you're feeling better soon..
Lynda
Thanks Lynda...I had no idea! :S That was RBH telling me to do it that way too, not even my GP...
But - how long would you have been on the 40mg for? I was only on 40mg for a little under 3 weeks (a couple of days at 30mg - conflicting messages from diff people) and you've been on it for a couple of months this time, and sounds like you're usually on it for about that long, so would have slower taper? The reg at RBH told me 3 weeks is when adrenal glands start to get affected so he wanted me to be reducing by that point. I was going down initially by 10mg, with 3 days on each dose, then from 20mg down by 5mg every 3 days.
But am pleased in a way that this could be the pred as means it might go away...until next time anyway! Hope you feel better soon, I got the emotional wreckage when I was on the full dose, ugghh. Don't know what the leaflet was on about with the self-harming - it was more like everyone and everything else pissed me off!!
Ive been on oral pred since 1st August, and have been slowly reducing it, initially by 5mg a fortnight and then more gradually. Im now down to 5mg and feeling terrible. Tired, no appetite, gastrointestinal disturbance, and whats worse the last couple of days I've been an emotional wreck. Angry, very very tearful and just generally feeling like a total fruit loop..
I've never had these problems with coming off pred before, but I guess there is always a first time, does anyone else experience this?
Lynda
o no you have all the bad side affects of pred there poor you i say go see a gp asap they are addictive very very addictive if you dont get no were with gp give AUK a cool on 08001216244 for free talk to them as i find they are gr8
hope u feel better soon !
mat x
Hi Mat, dont worry I have no addiction to steroids lol. Addiction is driven by a psychological need, and I dont have that, its just that pred affects the adrenal glands and can cause physical problems if not reduced appropriately.
Phil, I think everyone is different in terms of the physical symptoms. My usual is to have 30mg for a week, and then reduce by 5mg every three days. I've never dropped by 10mg. Unfortunately this last time I ended up on 40mg for a good while (no sleep! lol) and so the reduction has been much much slower. I had planned to do the 5mg every three days thing, but my consultant was VERY emphatic that this was way too fast and I was not to do it.. Im glad I didnt as Im struggling even with his plan!
I think the 3 week rule re the adrenal glands is all well and good in theory but we are humans not machines I know when I have accidentally missed a dose within the first week (of 30mg) I've had terrible muscle pains etc.. stops me doing it again lol.
Nice to know Im not the only emotional wreck!! Hope youre feeling better soon and people piss you off less, Ive been feeling rather savage toward some folk!!
Lynda x
hehe thanks, but it sounds like you're having a much worse time of it than me! The emotional thing got better (mainly...some people still piss me off lol but maybe it's just them) when I started reducing, and the other things aren't that bad; it was just a bit of an 'aha' moment when I read your post and realised that maybe the pred could have something to do with the reason I'm not feeling the best ever. Pity the effect on lungs didn't seem to last as long as side effects...
Hope people piss you off less and you feel better soon. Also that you don't need more pred any time soon! x
does the pred leaflet list these side effects?
Hi Lynda
I am also being tapered off Pred really slowly and feel the same as you if not worse.
I have found that I cannot go anywhere without my walking stick cause my muscles are so weak and I have no balance at all, also the muscle weakness is so bad that getting up from a chair will hurt my legs, also with my arms and hands I can't lift anything without dropping it and making more of a mess,
Also have major tantrums that are worse then my 3 year old nephew, lol,
Have a lot more doo-lally moments where I think I am losing it and will be better off in a mental home,
I also seem to have lost my memory, can hardly remember anything (thank god for smartphones and their apps)
This is the third time, I am being tapered off them so kind of slowly getting use to the side effects and know how to prepare for it mentally but still preparing for it and keeping up with it whilst being tapered off is so hard but luckily RBH are really good at keeping in touch to see how I am coping and doing, also have a great GP which helps loads and as always my friends and family are great.
When I was on a low dose and stable, went through my 'action plan' which helps them understand what I am going through and help them support me.
I also found keeping extremely busy whilst sofa surfing really helps, thats if you can concentrate long enough - cause I found that I have low concentration levels so now have taken up baking & cooking - which has helped loads
Hope you feel better then I do and you come off the dreaded pred quickly!!!
Take care
Nimz
xxx
Hi Nimz, sounds like you have a good bunch of folk supporting you I think my tantrum the other day would have given most three year olds a run for their money LOL! dearie me.. interesting what you say about memory, I only said to my hubby the other day that I think my cognitive functioning generally has completely gone up the spout since my lungs really went down hill. I said to him the other day, going along in the car ""oooooh look at that hot water bottle!!"" - it was a hot air balloon in the sky. Nuf said, that is what my life is like, I sound like a numpty half the time now
I went back on to 5mg pred having disastrously tried to reduce it further, and am now reducing it by 1/4 tablet (5mg) per week to see if that helps. So far so good (day 4) - or at least better than before.
Went back to Papworth friday to have my IV line taken out (two weeks of IV tazocin at home) and they have increased my meds argh... Im now taking about 25 tablets a day plus inhalers. Monteleukast increased to 20mg at night, domperidone increased to 20mg three times a day, and omeprazole increased to 40mg twice day BUT my peak flow has started to edge up from 270 where it has been stuck for the last week, before that it was 250. I blew a 310 last night woop woop!!
happy sofa surfing, take it easy
Lynda xx
I'm glad to hear that your asthma's improving Lynda. Take care x
I was put on prednisone years ago for crohn disease and didnt have any problems with withdrawel
but I was put on some on sunday for asthma and I have awful symptoms, dizzy/lightheaded, mood swings, tummy ache, and acid...is this normal too?
Hi Pinky,
This is in no way a medical opinion but I was on pred last year, for about 2 weeks, and had far fewer side effects than I did this year on the same starting dose! OK this one lasted longer but still, the side effects kicked in pretty quickly. Hope you feel better soon.
btw one thing I wanted to say to everyone: I had an outpatient appt for asthma yesterday and the dr was slightly worried that I hadn't been given any bone protection with the pred. It would never have occurred to me as I always thought that was only if you were on it long term but he said actually a lot of the bone and muscle-related side effects from pred happen quite quickly, as in within a couple of weeks, and though it often gets seen as a long=term side effect it's something drs need to think about with shorter courses as well. So he sent me for a Vit D test (I also thought that because I drink lots of milk I'd be ok but had forgotten you need Vit D to absorb calcium).
It may well be normal but I was looking up the symptoms and many of them it seems can overlap with what people have been describing. You may all know about this already and be taking steps to protect against it, but if not might be worth discussing with your consultant/GP and asking for a Vit D test as you might find it's contributing to the way you feel. Have to say it never occurred to me that this might be an issue for me, so even if it isn't thought I'dsay on here.
When I was referred to Papworth heart and lung hospital, one of the first things they did amongst the raft of tests, was a dexa scan - turns out I have steroid induced osteoporosis and I've never been on them long term So, for the last couple of years I have been on Adcal D (vit D and calcium supplement) and a biphosphonate. Im surprised they havent considered giving you a dexa scan its the only way to find out if your bones have been affected by the steroids.
Damn peak flow has dropped again! ho hum.. hope the rest of your appointment went well
Lynda
Pinky- Are you taking the pred with/after food as this might help with tummy ache/acid if you're not doing it already. Otherwise some acid reflux meds from the GP might be a good idea (I'm saying from GP as some over the counter remedies interact with other meds).
Philomela- Useful information, I shall be asking about this as I've had three courses in the last 9 weeks and only been of it for a total of 20 days in this time.
Didn't see your post before I replied Lynda, but I do hope you peak flow picks up soon.
Thanks Lynda - and yes hope your PF goes up again! Did your osteoporosis improve? Hope so as you seem to have enough to deal with as it is.
I don't know if they're planning to see what the Vit D levels etc are before doing a DEXA scan; I thought I had fairly strong bones since I'm 27 and have so far (touch wood) never broken anything.
I'll be interested to see what the Vit D test shows though. I do appear to have some of the risk factors (don't really eat any of the foods that have it, live in England, wear foundation with an SPF every day, probably don't get out much, plus now have been on pred...). Also my ribs/chest have been hurting for the last month or so - was told I had costochondritis last year and sometimes ribs flare up with that so assumed it was the same this time, but now the pain seems to be on the ribs not between - apparently with Vit D deficiency ribs can hurt? So again though my test may be totally normal, could be worth thinking about for anyone with rib pain who's been on pred - mind you, just finding it hard to breathe can make ribs painful if it's for long enough!
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Thanks Lynda - and yes hope your PF goes up again! Did your osteoporosis improve? Hope so as you seem to have enough to deal with as it is.
I don't know if they're planning to see what the Vit D levels etc are before doing a DEXA scan; I thought I had fairly strong bones since I'm 27 and have so far (touch wood) never broken anything.
I'll be interested to see what the Vit D test shows though. I do appear to have some of the risk factors (don't really eat any of the foods that have it, live in England, wear foundation with an SPF every day, probably don't get out much, plus now have been on pred...). Also my ribs/chest have been hurting for the last month or so - was told I had costochondritis last year and sometimes ribs flare up with that so assumed it was the same this time, but now the pain seems to be on the ribs not between - apparently with Vit D deficiency ribs can hurt? So again though my test may be totally normal, could be worth thinking about for anyone with rib pain who's been on pred - mind you, just finding it hard to breathe can make ribs painful if it's for long enough!
Sorry Philomena I didnt see this post! Im due another dexa scan soon, as they dont repeat them closer than every two years as its pointless. Certainly no one has told me it will improve, the worry seems to be about it worsening - no surprise with all the damn steroids! Incidentally I havent broken anything since childhood but becasue of my kyphoscoliosis and neck problems, Im so terrified of falling over I am rather careful
The difficulty with doing vitamin/calcium levels is that its not always indicative of what your body is utilising or what is actually in your body. An example is calcium, its so important that if your serum levels are low, the body will take it from elsewhere to keep serum levels stable. Does that make sense? I dont think youre a numpty, Im just a bit brain dead at the mo LOL
I dont know anything about costochondritis - it sounds horrible bless you! I have more problems with pleurisy.
Oh to be 27 again..
Lynda x
Well, I finally finished my steroid reduction and took the last one yesterday morning. Unfortunately Im back on 30mg daily from tomorrow. The day was good while it lasted.. Feel like Im going round in bloody circles!
Oh no, that deffo didn't last long, how pants. I hope you can reduce soon. Hugs
I've been off mine for 11 days, hooray. After a course in early September I was off pred for 8 days before being back on them for 5 weeks, managed 12 days off then was back on the pred again. Hoping to beat the 12 days and make it much longer this time.
Hugs to everyone on/reducing pred.
Fingers and toes crossed for you Lou
Ive been on the damn things since the first of August - just finished two weeks of IV antibiotics mid November and i have an infection again! Got terrible pleurisy pain too which is making things more difficult. Papworth on friday to decide what happens next, until then its yet more sofa surfing, I shall be sofa shaped soon!!
Lynda
Arghhh nooooo that sucks Lynda!
You have my sympathies on the pleurisy, very painful!!
Gentle hugs x
Thanks Angelica. Im feeling much worse today and its making me VERY grumpy! Think I shall take a packed bag to Papworth when I have my appointment Friday Pleurisy is just hideous isn't it.
What frustrates me more is that I have so much uni work to do but I have no concentration, feel like my brain has turned to mush. Some might say thats normal
Lynda x
Oh no, sorry to hear you're feeling worse, and pleurisy too. What a royal pain that is. I think you're entitled to be grumpy with all that's going on. I hope you improve soon and the packed bag is not needed for Papworth. Good luck, let us know how you get on. x
Hi Lynda,
that you don't seem to be having a great time right now especially with the pleurisy and more pred! Sounds v frustrating and painful, hope Papworth are able to help but crossing fingers you don't need that bag...
What are you doing at uni? Hope they're being understanding, whatever it is - I know that mush brain feeling! And it is worse on steroids I think compared with 'normal' lack of sleep. Hope you manage to catch up over the holiday.
Also hope your osteoporosis doesn't get worse - like you say not helped by steroids! Thanks for the info - that does make sense. I've still not heard back with results - he did say they take a couple of weeks though. I'll be surprised at this point if Vit D at least is not low, given what I now know about it, so I hope they hurry up as I'd like to start taking the replacement. Guess I could just get my own but I'd like to hear from them about how much, if any, is needed - hopefully if it does look normal they will take all that into account. (If it does come back normal think I will email the CNS and ask about it all - I wouldn't bother if I didn't have these achy bones!)
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Hi Lynda,
that you don't seem to be having a great time right now especially with the pleurisy and more pred! Sounds v frustrating and painful, hope Papworth are able to help but crossing fingers you don't need that bag...
What are you doing at uni? Hope they're being understanding, whatever it is - I know that mush brain feeling! And it is worse on steroids I think compared with 'normal' lack of sleep. Hope you manage to catch up over the holiday.
Also hope your osteoporosis doesn't get worse - like you say not helped by steroids! Thanks for the info - that does make sense. I've still not heard back with results - he did say they take a couple of weeks though. I'll be surprised at this point if Vit D at least is not low, given what I now know about it, so I hope they hurry up as I'd like to start taking the replacement. Guess I could just get my own but I'd like to hear from them about how much, if any, is needed - hopefully if it does look normal they will take all that into account. (If it does come back normal think I will email the CNS and ask about it all - I wouldn't bother if I didn't have these achy bones!)
Hello philomela
Well, Papworth are helping - they admitted me from outpatients for two weeks of IV antibiotics (a different one this time) and IV aminophylline, physio etc. Still feeling rather rough but early days..
Im doing a three year (part time) psychotherapy advanced professional diploma! And loving it - when I was nursing I always wanted to do it but just didnt have the time. Now I have loads of time but Im always ill LOL. The tutor is very understanding and my friends take it all in their stride thankfully.
I should hopefully be having a repeated dexa scan while Im in here so fingers crossed there are no changes
Hope you're okay..
Lynda
Hi Pinky
I too am reducing my maintenance dose of steroids. I've been on between 15 mg and 10 mg daily for nearly three years. I'm too weeks into reducing by 1 mg every two weeks and feel awful. My legs ache, am tearful, fatigued and know I have a long way to go to get down to 5 mg without having any flare ups and having to go back up. I could have gone in to reduce but prefer to get on with it at home. I have reduced steroids lots of times over the years and it doesn't get easier it is a nasty thing to have to do and difficult to explain, people have no idea how awful it is. I do feel we're in this together, ( not Cameron style) but proper in it, lol. Big hugs to you.
I react quite badly to TAKING prednisone, but have only taken it on rare occassions due to doctors insistance. When they see for themselves just how badly my throat reacts by constricting, on top of the other sideeffects i have like dizzyness and headaches, and gernally feeling like zombie, then they agree I am right to refuse to take it! Something VERY important that many doctors, patients and pharmacists all forget, is that each and every person reacts DIFFERENTLY to different drugs and medications. There are 'general trends' as scientific facts, but at the same timethese are not hard and fast rules for everyone. For example, I took prednisone for only 3 nightmare weeks before refusing to takethem anymore, and I continued to be like a zombie for 5 days afterwards.
Your body will eventually return to normal, what is important of course is that you trust your own instincts as a priority ABOVE doctors opinions. And of course, that you only take steriods like prednisone if and only if there is a clear benefit from taking them. If no benefit, then why bother?
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AD, I forgot about the teeth grinding, terrible isnt it!?
to hear people are suffering with this but I did have a bit of a lightbulb moment - do other people find these symptoms can happen for a bit after you stop or just while on it? They sound familiar but I've been having some of them after I stopped, after tapering down from about 3 weeks at 40mg to nothing over a couple of weeks. Didn't think it could be that when I'd stopped completely...but maybe it is?
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