reducing / coming off prednisalone
bailey27
Member Posts: 689
Hi
At my last rheumy appointment he told me to stop anti inflammatories before next mri because he wanted to see if there inflammation in other joints.
I have been on a relatively high dose of pred from over a year and at the appointment he prescribed me arcoxia to take in stead of the celebrex.
I have managed to get the pred from 25 mg to 8 mg in approximately 7 weeks. The arcoxia is fab.
The problem i have is that my scan is on wednesday and really cant face drpping them down any more.
Yesterday and today i dropped them down to 6mg and i feel like crap. I feel like a travel sickness feeling , stinking headache... i've already got a mouth full of ulcers and i feel realy weak and lightheaded.
I dont know what i should do.
When should i stop taking the arcoxia in order for the scan to show up? My scan is wednesday so would 2 days before be ok? i am scared to drop the pred anymore ebcause i already feel ill from it.
Any adivce would be greatly appreciated.
I hate my GP surgery - the staff are so horrible that going there isnt an option for me.
At my last rheumy appointment he told me to stop anti inflammatories before next mri because he wanted to see if there inflammation in other joints.
I have been on a relatively high dose of pred from over a year and at the appointment he prescribed me arcoxia to take in stead of the celebrex.
I have managed to get the pred from 25 mg to 8 mg in approximately 7 weeks. The arcoxia is fab.
The problem i have is that my scan is on wednesday and really cant face drpping them down any more.
Yesterday and today i dropped them down to 6mg and i feel like crap. I feel like a travel sickness feeling , stinking headache... i've already got a mouth full of ulcers and i feel realy weak and lightheaded.
I dont know what i should do.
When should i stop taking the arcoxia in order for the scan to show up? My scan is wednesday so would 2 days before be ok? i am scared to drop the pred anymore ebcause i already feel ill from it.
Any adivce would be greatly appreciated.
I hate my GP surgery - the staff are so horrible that going there isnt an option for me.
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Comments
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In the same way that drugs don't work instantly, they don't leave the body instantly either. Every hospital seems to have a different system too.
When I've had MRIs I've been told to stop various meds (always the good ones!) up to a fortnight before, because a clear system aids feedback. I start a month before that so that if I get an MRI cancellation slot I'm ready.
If you can tolerate it, stop everything now. You'll have a rough few days but the scan results may well be that little bit clearer, which in the long run is better for the doc and you. If you can't manage that, then don't and hope the MRI will still reveal enough. It is a dilemma, isn't it? Why is nothing about this whole damn business ever straightforward? Wishing you well. DreamdaisyHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Thanks for that. So it is quite safe to stop taking prednisalone all at once?? If it is then i'll stop them all and stay in bed for a few days.
Cheersdreamdaisy wrote:In the same way that drugs don't work instantly, they don't leave the body instantly either. Every hospital seems to have a different system too.
When I've had MRIs I've been told to stop various meds (always the good ones!) up to a fortnight before, because a clear system aids feedback. I start a month before that so that if I get an MRI cancellation slot I'm ready.
If you can tolerate it, stop everything now. You'll have a rough few days but the scan results may well be that little bit clearer, which in the long run is better for the doc and you. If you can't manage that, then don't and hope the MRI will still reveal enough. It is a dilemma, isn't it? Why is nothing about this whole damn business ever straightforward? Wishing you well. Dreamdaisy0 -
Hi Bailey – sorry you are feeling so unwell. I would have expected the rheumatologist to have given you some kind of schedule for cutting down on the pred (have always done this for me in the past) as I know it can be dangerous to cut down too quickly – and to make you very ill.
My GP surgery is a nightmare too so I sympathise but I suspect the GP wouldn’t know the answer anyway. My suggestion would be to phone your rheumatology dept and ask their advice. I don’t know if there is a rheumy nurse you could speak to or perhaps you could phone to speak to your rheumatologist’s secretary or assistant. I have found several times recently, that, on the whole, consultants’ secretaries are most helpful and, because they have a “hotline” to the main man (or woman) himself you can often get a quick answer – which is really what you need – otherwise, by the sound of it, you may not be well enough to go for the scan anyhow.
Hope this helps Bailey – and please try to pluck up courage to call the rheumy dept today so that you can get the answers you need to put your mind at rest.
Just another thought – if you are seriously considering just going cold turkey on the pred – I would suggest that, at the very least, you check with the pharmacist at your chemist to make sure you are not doing anything dangerous.
Please post an update when you can – I’d really like to know how you get on.
Thinking of you.
Love Tilly x0 -
Hi
sorry for the questions but when you say very ill what does that means? I already feel like crap and so just figure if i feel like this then I might as well not put any other toxic crap in my body.
Thanks for your advice. xtillytop wrote:Hi Bailey – sorry you are feeling so unwell. I would have expected the rheumatologist to have given you some kind of schedule for cutting down on the pred (have always done this for me in the past) as I know it can be dangerous to cut down too quickly – and to make you very ill.
My GP surgery is a nightmare too so I sympathise but I suspect the GP wouldn’t know the answer anyway. My suggestion would be to phone your rheumatology dept and ask their advice. I don’t know if there is a rheumy nurse you could speak to or perhaps you could phone to speak to your rheumatologist’s secretary or assistant. I have found several times recently, that, on the whole, consultants’ secretaries are most helpful and, because they have a “hotline” to the main man (or woman) himself you can often get a quick answer – which is really what you need – otherwise, by the sound of it, you may not be well enough to go for the scan anyhow.
Hope this helps Bailey – and please try to pluck up courage to call the rheumy dept today so that you can get the answers you need to put your mind at rest.
Just another thought – if you are seriously considering just going cold turkey on the pred – I would suggest that, at the very least, you check with the pharmacist at your chemist to make sure you are not doing anything dangerous.
Please post an update when you can – I’d really like to know how you get on.
Thinking of you.
Love Tilly x0 -
I wouldn't advise anyone to go cold turkey on Pred.....it really can lead to serious illness (induced Addisons Disease, I think). As far as I can remember the anti-inflammatory effect from it lasts for about 36-48 hours, and really 6mg a day is such a tiny dose that it shouldn't interfere with the scan. To come down so much so quickly isn't really good......I have just taken 5 months to get down to 7.5mg from 30. I can't say I'm surprised that you are feeling awful.
Frankly I'm shocked that you were told to do this on your own without any instructions, they should have given you a reduction table or plan........mine has been done by the Consultant herself in the past and she has explained every step to me while she was doing it as she has this time.
I'd contact the Rheumy nurse or the consultants secretary and make sure they know what you are doing.
Annie0 -
It's dangerous to cut down the pred too quickly because your body has stopped producing the right amount while you've been taking pills. Stopping it means that your body will have no chance to restart making cortisone, leaving you in a very sorry state. Definately do not stop it cold turkey.
I'm not sure how long anti-inflams stay in your system for. It may be worth your rheumatology team to ask for confirmation on what you're supposed to do.0 -
Yikes! My apologies, I got that bit wrong - I am so sorry, I didn't mean everything, totally the wrong word. Keep reducing the pred at a steady rate. The 6mg dose is quite small so it shouldn't affect anything too much. Mea culpa. I am so sorry. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi again - sorry I didn't see your reply to my post sooner but, as Annie and scattered have said, it really can be dangerous (and I think possibly even fatal in some cases) to stop cold turkey. Hope you have managed to speak to either rheumatology clinic or pharmacist by now? Please do post again with an update.
Love Tilly x0 -
Hi Bailey
As you know I take the arcoxia too - do you take one 90mg once aday like me? I think i woldl only leave one off myself, but tend to agree with the others. Check with the pharmacist. If you feel really bad anyway - surely there will be enough inflamation for them to see??
You take it steady and let us know what they suggest
Love
Toni xx0 -
Hi
Sorry I havent responded sooner.
Thanks for all your advice. There is no way I am going to reduce them anymore than I have already. I feel totally like crap (Please excuse my language) . I am even going to slightly increase them tomorow as I cant feel like this a day longer.
All day I have been curled on the sofa, too weak to even walk out to kitchen and even felt faint sat up at computer. I have been feeling very lightheaded and it is very scarey.
I would not recommend it to anyone and I am very annoyed that I havent had any help from my rheumy / GP to do this.
I think i'll just stop the arcoxia a couple of days beforehand and if that isnt enough then I will scream.
Hopefully this should be enough?0 -
Yes I take one in the mornings, I have found it to be very good for me.frogmorton wrote:Hi Bailey
As you know I take the arcoxia too - do you take one 90mg once aday like me? I think i woldl only leave one off myself, but tend to agree with the others. Check with the pharmacist. If you feel really bad anyway - surely there will be enough inflamation for them to see??
You take it steady and let us know what they suggest
Love
Toni xx0 -
No joy phoning, still waiting for a call back..but the last time i rang therheumy nurses I didnt ever get a call abck so wont hold my breath. xtillytop wrote:Hi again - sorry I didn't see your reply to my post sooner but, as Annie and scattered have said, it really can be dangerous (and I think possibly even fatal in some cases) to stop cold turkey. Hope you have managed to speak to either rheumatology clinic or pharmacist by now? Please do post again with an update.
Love Tilly x0 -
bailey27 wrote:Hi
Sorry I havent responded sooner.
Thanks for all your advice. There is no way I am going to reduce them anymore than I have already. I feel totally like crap (Please excuse my language) . I am even going to slightly increase them tomorow as I cant feel like this a day longer.
All day I have been curled on the sofa, too weak to even walk out to kitchen and even felt faint sat up at computer. I have been feeling very lightheaded and it is very scarey.
I would not recommend it to anyone and I am very annoyed that I havent had any help from my rheumy / GP to do this.
I think i'll just stop the arcoxia a couple of days beforehand and if that isnt enough then I will scream.
Hopefully this should be enough?
Bailey, if this scan is not till next Wednesday, don't wait till tomorrow to put up the dose, take some more NOW. What you take now will not have any effect come next week and you can at least be more comfortable till then.
Annie0 -
Hi Bailey
I agree with Annie - why wait. In my experience pred tends to get into your system quite quickly so you will hopefully get some relief sooner rather than later. I know I keep saying it but I still think it would be good to check with someone whether, if you have cut down too much too soon, you should in fact be increasing the dose further than you think. Given how bad you feel, you could be giving yourself a serious problem if your body can't cope with the dose reduction. Not trying to frighten you - just want you to be ok. Another thought - do you have an out of hours docs service (which is not connected to your GP surgery) who you could phone for advice? Unlike my GP practice, my local out of hours service is brilliant and when we have needed them recently, the doctor called back within just a few minutes to speak to us. This is not the same as NHS Direct - I have never used them but have not heard good reports as to their responsiveness or accuracy of information. Really hope you start to feel better once you get some more pred into your system Bailey. Love Tilly x0 -
Morning Bailey
Just wanted to say that I hope that, if you did decide to up your pred dose last night that you are feeling a bit better today. Thinking of you. Tilly x0 -
Hi
Had an awful night, didnt get off to sleep untilgone midnight then woke up at 3.30am with extreme sweating, palpitations and my stomach was cramping up terrible. I decided to get an emergancy appointment with my GP this morning and she immediately told me to put my prednisalone back up. She has also given m something extra to stop the stomach cramps. She sadi I was going through 'cold turkey' and that I should never have come down as quickly as I did. I explained that the thruemy didnt give me an advice on how to do it and she said that unfortunately Drs think that when patients have been on a drug for so long they automotically know how to alter the dosage, which she said was wrong on their part and that they shouldnt assume that we know. She said the maximum you ever come down is by 2mg if you are on them long term or 2.5 mg for short term usage.
Something everyone should make a note of I think.
I have put dose back up today and hopefully will feel better soon.0 -
Hi Bailey
Thanks for the update.
So glad you now have some medical advice.
I do hope you feel better soon and I am sure you have plenty of inflamation for that MRI.
Let us know how you get on wont you?
Love
Toni xx0 -
Oh poor you, how miserable. I hope you feel better soon. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi
Thanks both. Yes hopefully enough her now! lol got to laugh i suppose.
Dont know why they cant just do blood test for it instead? I suppose they have their reasons.
Yes, I actually feel a bit better already.
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Hi Bails
thats good
I reckon maybe its easier to 'see' then? But I rcekon you got bucketloads
take it carefully for now
Love
toni xx0 -
Hi again Bailey, sorry you had such an awful night but glad to know that you are ok-ish (!) and that you did get to see the doc today. It really is shocking that the rheumatologist just left you to get on with it – and I, for one, will be keeping a note of the dosage reductions you mention in your message just in case. Hope you do start to feel much better again quickly now your dose has been put up again. And really good luck with the scans. Please do post an update to let us know how you get on.
Love Tilly x0 -
Thanks for your advice and support. I am feeling a lot better today. I still dont feel quite right but a heck ofa lot bettr than i was. The tablets they gave me are helping the stomach issues so i am happy about that. I have scan wednesday and see the rheumy friday so i am hoping the results get sent to him pretty soon. I will certainly be telling him i wasnt happy about the advice i wasn't given.
x0 -
Hi Bailey - so glad you are feeling lots better today! And glad to hear that you will be giving the rheumy a piece of your mind!
Good luck with scan on Weds. Love Tilly x0 -
good luck from me to bailey.
so glad to read you are feeling better...what a horrendous time! quite right to tear a strip off rheummy when you see him.
keep well. lol
Iris x0 -
Hi
What a good day i have had.
Feel wonderful and full of beans. Even managed to rag myself to local hardware shop amd buy a gas bottle nad cook my burger son the bbq. I wasnt feeling too good he other when i intended on having one, so regardless of the wind and light showers i did it anyway.
I hope people will get to read this post and elarn from it.
If you are on long term pred do not drop by more than 2 mg at a time. Short term no more than 2.5 mg - big mistake of me to drop by about 10mg - but then again i wasnt told otherwise.
Thank you to everyone who supported and advised me - and advised me to get help.
Hope evryeone else is having a good day
xxxxxxx0
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