feel really ill - could it be finishing prednisilone?
Posted , 5 users are following.
hi all - i suffer with COPD, i usually have about 2 "flare ups" per yr. - 5/7 days of amoxillan & prednisilone along with salbtimol for my nebuliser usually puts me right-however this latest flare up ended with being hospitalised but thankfully all ok-the problem seems to be since i have finished the steroids - i was on them for 13 days 30mg day then tapering off 25mg 3 days,20mg 3days etc.but since stopping i have felt really ill,i feel sick most of the time,headache,no energy,no appetite,no taste,cramp like feelings in most parts of my body,occasional fever,sweating, - have been off them now for 9 days & have never had problems with prednisilone before although i have never "tapered" off before just had a 5 or sometimes 7 day course 30mg day & then stop-i have also stopped smoking since hospital & am wondering if this is having any effect - really don,t know what to think-just want to feel better-one good thing my chest/breathing is a lot better since stopping smoking. - any advice would be greatfully recieved - thankyou
0 likes, 11 replies
cjb106 sally54984
Posted
Yes, that definitely sounds like the effects of a too fast steroid withdrawal. Take a look at this discussion thread - one of the best discussions I have read about tapering Prednsolone https://patient.info/forums/discuss/prednisolone-withdrawal-side-effects-549622
sally54984 cjb106
Posted
thankyou for your reply & have read the above which is very informative - i have also read anything i can get my hands on to do with this lol - my thought now is "is there a treatment for this" or will things gradually improve - thankyou
cjb106 sally54984
Posted
I have had to have three rounds of steriods now over a 12 month period which went: 30mg for three weeks then a week on 25mg, week on 20, 15, 10, 5, 0. I finished two days before Christmas 2015 and was feeling back to normal by March 2016. Unforunately, condition flared in June (I have ulcerative colitis) so back on 30mg but only for a week, then same taper. Symptoms came back at 10mg so back to 30 for a week, same taper. I have been drug free for about 8 weeks and seem to have good and bad days. A week ago, I had to see my GP on another matter and mentioned this he didn't think 8 weeks was excessive for recovering from adrenal issues. There was no time to discuss how to counteract this so I asked my pharmacist and he just said time, good diet and regular but not excessive exercise.
ihavenonickname cjb106
Posted
ihavenonickname sally54984
Posted
When we take steroids, our adrenal glands go on holiday.
The longer we take steroids, the greater the dose of steroids, the more physiologically dependant upon them our body becomes.
The trick is to withdraw the steroid at the same pace the adrenal glands are coming back on line and releasing their own steroids.
Next time you might try 50 mg day one, 45 mg day two,40 mg day three etc. This burst method keeps the adrenal glands guessing
Great, you quot smoking!
good for you
sally54984 ihavenonickname
Posted
thankyou for your reply - i have had a good read up on tapering etc. & with what you are saying can see how things are happening - it makes sense-just hoping things will get better as feeling like this is awful - thankyou - still not had a fag lol
jill18540 sally54984
Posted
Hi Sally
I really sympathise - yes, I'm sure the way you are feeling is due to the withdrawal of the Pred. I am having exactly the same symptoms as you. I am now down to 2 mg and am tapering very slowly due to the advice of the lovely people replying to this forum. I have had aches and pains in all my limbs for several months now (I started off at 40 mg in November 2015 and have been tapering it since but the last couple of months have been dreadful as I have got to the lower doses). I have also had extreme fatique and no energy to do anything much and also feeling boiling hot one minute and then freezing cold, as though my temperature control has gone. I have also started getting nausea mainly in the late afternoon and evening - can anyone tell me if that would make sense from a physiological point of view? I think the cortisol is highest in the morning and obviously my own adrenals are now kicking in so it would make sense to me that, as the Pred I take in the morning starts to decrease in my body, then the nausea is caused because my own body is not producing enough yet? Does that make sense or am I being daft?
Well done, Sally for quitting smoking! As far as the Pred is concerned, I am sure you will start to feel better but its a hard slog from what I am discovering!
Take care Jill xx
sally54984 jill18540
Posted
criky you have certainly been through the mill & it,s horrible feeling like this but at least now i know what it is !! what your saying about feeling nauseas when the pred is wearing off makes perfect sense - i am going to the docs tomorrow to put him up to date but am wondering wether he maybe will put me back on them to reduce slowly - just a thought & as i haven,t been on them now for nearly 11 days am i now over the worst ? thankyou jill - have read in one blog that 3/4 weeks is the recovery time once your off them
sally54984
Posted
hi all - sorry to say no improvement-the doctor came out 12th,took bloods,didn,t pay any attention when i said "could it be steroid withdrawal"& gave me a week of antibiotics-after 4 full days on them not the slightest inprovement,feeling worse,temprature 24/7 unless i take paracetamol to keep it down-doc came in 16th,all bloods clear,no infection showing but insists that i have another 5 days different antibiotic !! says that pred withdrawel only happens when people have been on them for a long time & that the taper plan i had was sufficient - really lost now as i can,t see the point when there is no infection to be on antibiotics !! just don,t now what to do - sorry for the moan
ihavenonickname sally54984
Posted
awh bunk!
Steroid withdrawal happens every time steroid is withdrawn. Sometimes the withdrawal is mininal so we don't pay attention to it and other times it is like being hit with a sledge hammer.
Somebody had to graduate at the bottom of the class...
hugs
judith
jkprednisolone sally54984
Posted
Sorry that you're feeling bad, but well done for stopping the smoking. Can you just confirm, what/how much/are you taking bone protection? Just to echo the others, it does sound like the steroids are the problem. Do you know if your GP knows about steroid withdrawal? There seem to be a lot of doctors that don't