TRYING TO COME OFF PREDNISOLONE

colinone

HI Guys, Well i have been on the prednisolone for months along with MTX and enbrel although i'm having some problems and had to stop the MTX and enbrel i had been coming down off the Prednisolone because last year i had an op on my tummy and seeing the surgeon for a check up he told me the prednisolone was causeing me some problems. Spoke to my Rheumy on last appointment he said start reducing the pred. I was on 20mg a day and to reduce weekly by 5mg so 20 / 15 / 10 when i got to five i became quite ill bad head bad tummy feeling ill all the time feeling like i was going to pass out and cant stay awake. had this for three days. Last night i upped my dose back to 10mg and although not feeling to well a lot better than i have been. Any idea whould be helpfull but i'm back to see the rheumy on the 18th so not to long to waite.
Colin

trisher

colinone wrote:

HI Guys, Well i have been on the prednisolone for months along with MTX and enbrel although i'm having some problems and had to stop the MTX and enbrel i had been coming down off the Prednisolone because last year i had an op on my tummy and seeing the surgeon for a check up he told me the prednisolone was causeing me some problems. Spoke to my Rheumy on last appointment he said start reducing the pred. I was on 20mg a day and to reduce weekly by 5mg so 20 / 15 / 10 when i got to five i became quite ill bad head bad tummy feeling ill all the time feeling like i was going to pass out and cant stay awake. had this for three days. Last night i upped my dose back to 10mg and although not feeling to well a lot better than i have been. Any idea whould be helpfull but i'm back to see the rheumy on the 18th so not to long to waite.
Colin

Hi Colin
I was on Prednisolone for nearly a year some years ago and I weaned off every 2 weeks I dropped a dose I found every week was too much. I felt really tired for a month or so but it did sort it's self out.

Hope you feel better soon
Trisher

bevman

colinone wrote:

HI Guys, Well i have been on the prednisolone for months along with MTX and enbrel although i'm having some problems and had to stop the MTX and enbrel i had been coming down off the Prednisolone because last year i had an op on my tummy and seeing the surgeon for a check up he told me the prednisolone was causeing me some problems. Spoke to my Rheumy on last appointment he said start reducing the pred. I was on 20mg a day and to reduce weekly by 5mg so 20 / 15 / 10 when i got to five i became quite ill bad head bad tummy feeling ill all the time feeling like i was going to pass out and cant stay awake. had this for three days. Last night i upped my dose back to 10mg and although not feeling to well a lot better than i have been. Any idea whould be helpfull but i'm back to see the rheumy on the 18th so not to long to waite.
Colin

hi colinone i have been on prednisolone for the last year and a half when they tried to reduce it my GP gave me 1mg tablets so i could go down in one,s instead of fives had to go back up be did reduce them and this did help.hope you feel ok Laurence

colinone

Hi Laurence / Trisher
Thanks for the info Laurence nice to another guy on the site.

Trisher you seem to be having more than your share of problems how are you doing today after the sleepless night. Its hard to cope with the pain but i geuess you know that. Old ones down the pub indeed, i wish lol i spent most of the day and night sleeping in the computer room but at least i had some sleep. Take care Trisher ill look out for you
Colin

frogmorton

Hi Colin
Just a little bit of support from me I'm afraid...have no really good advice for you
Glad you feel a tidge better and hope you get some good advice from rheum on 18th. Just got to survive till then!
Take care
Toni x

ldouglas

colinone wrote:

HI Guys, Well i have been on the prednisolone for months along with MTX and enbrel although i'm having some problems and had to stop the MTX and enbrel i had been coming down off the Prednisolone because last year i had an op on my tummy and seeing the surgeon for a check up he told me the prednisolone was causeing me some problems. Spoke to my Rheumy on last appointment he said start reducing the pred. I was on 20mg a day and to reduce weekly by 5mg so 20 / 15 / 10 when i got to five i became quite ill bad head bad tummy feeling ill all the time feeling like i was going to pass out and cant stay awake. had this for three days. Last night i upped my dose back to 10mg and although not feeling to well a lot better than i have been. Any idea whould be helpfull but i'm back to see the rheumy on the 18th so not to long to waite.
Colin

Hi Colin,

I can sympathise with the reducing of prednisolone - had been on it for over a year and a half, but eventually managed to wean myself off. Have to say this has been a very very slow process, and with many steps back up in dosage along the way, particularly when I got down to the lower strengths. What I found useful was having 2.5mg strength tabs. I didnt reduce as frequently as weekly though, and when I found that I was suffering because of a reduction I tried increasing by 2.5mg every other day, rather than going straight back up to the dose I had come down from. The final stwtep was from 2.5mg every other day (stayed on that dose for almost a month) down to nothing, and although I was told the dose I was on was unlikely to have any effect I felt rotten, so increased it again to 2.5mg every other day for another month, and now am off them completely, hurrah!!

Can they not give you something for your tummy? I was always co-prescribed omeprazole to protect my stomach while on the prednisolone, although coming off that is no barrel of laughs either - major heartburn, but hey ho!!!

Good luck with the rheumy

Lesley

colinone

Hi Lesley and thank you for your response, I spoke to the GP today he thinks there is some problem with my liver and told to discuss it with the Rheumy next week at my appointment. He also said he thought I had dropped the dosage of prednisolone to quick and to much dispite the fact that the rheumy told me. The GP thinks they have been masking the liver problem and the reduction has shown it up. However I’m back up to 20mg tonight as the arther pain is so bad. I have been on omeprazole for years as I had a hiatus hernia had it repaired last August I’m on 40mg a day now because of the prednisolone. Thanks for you help take care
Colin

woodbon

Hello Colin, Nothing useful to say. Just to wish you good luck and not too many problems along the way! Love Sue

ladypink

Hi colin,

It is hard, but I know you will really try. If you can't get right

down before your next app don't beat yourself up.


Take care suex :roll:

mistywillow

suemcevoy wrote:

Hi colin,

It is hard, but I know you will really try. If you can't get right

down before your next app don't beat yourself up.


Take care suex :roll:

Hi Colin
I have been on pred for the last 4 years. I have tried so often to reduce it 1 mg at a time really slowly, but almost immediately my joints start flaring. Have got some bone thinning now so not sure what will be said at my next appointment.
Good luck with yours on the 18th
Gillx

trisher

Hi Colin
Well shattered comes to mind, it was a long night, but I'm okay thank you. I should be used to it by now as it happens a lot, sometimes I do'nt sleep all night. I just try to find things to do to take my mind off the pain (if you can). I read stay on the computer between popping pills.
Thanks for asking though how are you doing?
Trisher

ramummy

Hello Colin,

Echoing what other posters have said it sounds like you're trying to come off the prednisolone too quickly - I'm sure I read somewhere that it has an effect on out adrenal glands and that's why we have to wean ourselves off them - I guess we are in effect physiologically addicted!

When I was first diagnosed in Nov I was out on 15mg and I started MTX in Jan, at the same time I began to reduce the does of P by 2.5mg every two weeks - at the moment I'm sticking on 10mg - I started to flare and so I had a booster steroid jab and the rheumy said he wouldn't reduce the P anymore until the MTX had got a better hold, in any event he says further reductions will be done slowly 1mg at a time - it just sounds to me like trying to drop 5mg at a time is too much.

Take care. x

joyful164

I have been reading how you are all coping with trying to come off prednisolone. I started on 15 mg last September because I wasdiagnosed with PMR. After 3 days on 15 mg. the pain became bearable. Then it was in every joint, but mainly in the upper limbs, thighs and head.

Each month I had to reduce the prednisolone by 2.5. mg (15 mg one day, 12.5 mg next day) for a couple of weeks. Then go onto 12.5 for a month then reduce by another 2.5 mg) The next two weeks were again 12.5 mg one day, 10 mg the next until I went on to 10 mg for another month, and so on.

I am now down to 7.5 mg and ready to do alternate 5 mg for the next two weeks. I am suppose to be down to 2.5 by June.

There have been one or two periods of a day or so where the pain has been so bad, I was told to increase the dosage again and sometimes I have decreased again too quickly I think, thus getting the dizzy spells. When I see my Gp on Thursday, I am going to ask for 1 mg to put into the equation and hope it works as you suggest.

thanks

Joy

colinone

Thanks all

Gill i read about the bone thining as if you dont have enough problems, why does everything have side effects it seems to me when one thing works for you it has bad side effects. Sometimes they are worce than the illness.

Ramummy Believe it or not it was my rheumy who told me to reduce at that pace. I'm back up to my full dose now and feel beeter

Joyful, LOL what a name to pick with an illness, I have had problems with the pain as well trying to reduce so gone back to 20mg now

Trisher I'm fine now thanks gone back to 20mg its better for the pain anyway, but i need to get off them. Oh the sleepless nights funny how you can feel so alone. I normaly take a nap in the afternoon but had to stop because i could not sleep at night but still cant sleep although so tired. i think tonight is a sleepless one been to bed once and just got back up. See the rheumy Monday so will find out if i can go back on the Enbrel Take care you all
Colin

emmarose33

Sorry I haven't read what previous posters said.
I just wanted to say that I am also having a tough time coming off pred. I couldn't cope with dropping it by 5mg, so have been prescribed some 2.5mg tablets, and will drop 1 a week.
TBH I am still having trouble and feel totally rubbish even dropping it by that much.
Still don't know why it is so awful to stay on it for a long time? I know it thins your bones and can make you a little chubby, but is that it? is there nothing they can do to protect your bones? I felt amazing when I was on 20mg (perhaps a little high) but it was as though I didn't have arthritis at all. Such a difference in my quality of life.
Anyone care to explain why it's so important to stop taking it??

roczko

Isn't anyone taking Risedronate Sodium along with the steroid? It's a 'once a week' tablet taken on an empty stomach.

I take only 5mg of prednisolone but I also take this to try and mitigate the affects of bone thinning.

As for why it's done gradually, I understand it's because taking prednisolone suppresses the body's own manufacture of cortisol and it takes some time for production to start up again. It could be fatal to be left with none of this hormone in the body.

Patrick

joyous

hi all ive been on these things for over 13 years now tried to come off them loads off times just cant quite manage it as the pain starts straight away , i was told once that i had to come off them cos of bone thinning i had bone scan bout 2 years ago and everything was ok my gp told me to take calcuim tabs there not bad but can make you go to the loo . i had to increase my dosage of the ped when i had my op 2 years ago and still on that dose mow 2.5 in mornin and same in evenin . the only time i can miss one is if im not in work or going out which involves walking am off next week so will try again to stop one of them . it is weight prob i want to stop them as my rhemuy suggest if they stop the pain why stop i.ve been stable for nearly 2 years now i am on mtx enbrel celebrex pred lanzopole for tum and loratine for the runny nose off the enbrel and symicot for the asthma im like a chemist with pain killers as well joy x

joyful164

Hi Colinone - I have used Joyful because that was my nickname at work. More to the point my 2CV is called Joyrider. Not bad for a 64 year old, well nearly 65. Pity you have had to go back to 20 mg.
Why are you called Colinone? Why not Colins'i'x?

My GP and consultant wanted me to try and get off steroids as quickly as was safe to do so because of my blood pressure and the risk of OA. Were you not prescribed Alendronic Acid to take once a week for the bones?

I have now been prescribed Pregabalin 75mg which, I have been told, should help me come off steroids quickly.

Also, I hate the way Pred. make me look like mitchelin man. :roll:

Cheery O everyone.
Hope you are all ok

Joyful

colinone

Hi Joyful, I'm Colinone because the others had been taken and it was all i could get i tried foor colin1 but it was taken.
Well a bit of a story about the Alendronic acid it oroduces to much calsium for me as i have kidney stones, surgeon will not remove them because of all the drugs i'm on. However he says if it gets so bad i cant cope he will remove them. Had the other side done last year as well as the Gal bladder out. I do take calsium tablets daily when i remember. A "cv hey they are in demand now becoming a collectors item.

Take Care
Colin

colinone

Thanks for all the info guys
Colin

frogmorton

colinone wrote:

Hi Joyful, I'm Colinone because the others had been taken and it was all i could get i tried foor colin1 but it was taken.
Well a bit of a story about the Alendronic acid it oroduces to much calsium for me as i have kidney stones, surgeon will not remove them because of all the drugs i'm on. However he says if it gets so bad i cant cope he will remove them. Had the other side done last year as well as the Gal bladder out. I do take calsium tablets daily when i remember. A "cv hey they are in demand now becoming a collectors item.

Take Care
Colin

Saw one on the m'awy a while back and one of the kids piped up "Look at that old car!"
I was miffed!! Loved 2cvs
Toni x

marief

Hi

I've reduced my Prednisolone been on it 14 years amount 10mg to 3mg.
I was on 3mg the first time I try to reduce them felt so bad went back on them talk to my Arthritis doctor and decided to reduce the prednisolone over a year , he said that you would get really bad reaction if you do it to fast I'm down to 0.5mg a day feel fine but it took a year .

you need to talk to you Arthritis doctor and tell him you need to doing slower.

marie

glo123

i came off PRED about 2mths ago, i was on them for the inflammation in my eyes [thyroid eye disease] i was weaned off week by week, i was ok coming off them but very tired, but then found i had OA, they said it was probably there before but the Pred was masking it.
Chris.

joyous

roczko wrote:

Isn't anyone taking Risedronate Sodium along with the steroid? It's a 'once a week' tablet taken on an empty stomach.

I take only 5mg of prednisolone but I also take this to try and mitigate the affects of bone thinning.

As for why it's done gradually, I understand it's because taking prednisolone suppresses the body's own manufacture of cortisol and it takes some time for production to start up again. It could be fatal to be left with none of this hormone in the body.

Patrick

hi no not heard of this tab will write it down and ask in july when im next at the hos for me check up ta very much joy.

joyful164

colinone wrote:

Hi Joyful, I'm Colinone because the others had been taken and it was all i could get i tried foor colin1 but it was taken.
Well a bit of a story about the Alendronic acid it oroduces to much calsium for me as i have kidney stones, surgeon will not remove them because of all the drugs i'm on. However he says if it gets so bad i cant cope he will remove them. Had the other side done last year as well as the Gal bladder out. I do take calsium tablets daily when i remember. A "cv hey they are in demand now becoming a collectors item.

Take Care
Colin

Hi Colinone

Thanks for explaining the name thing.
Sorry to hear about the GB problems. Must be very painful for you and the diabetes doesn't help either. Medication must be a real problem. I daren't even go thro all my other probs,oh well, if you want to know. Hietis Hernia, helicobactor ???? cant spell it, diverticulitis and very very high blood pressure, so there are a few tablets to take for them to add to the PA stuff. BP was 203/107. Got it down to 172/94. Still high. I worry too much
Talking about forum names, I see there is a Joyous in the system. Many years ago, someone where I was working at the time call me Joyous and I really hated it. Her name was Ann. You can guess the rest. Just called her Annous.

Goodnight
Joyful

colinone

Hi Joyful we must be simular i had the helicobactor bug picked it up in the west indies but got shut of it with a course of antibiotics. Had my Hiatis Hernia done when i had my gall bladder out and at the moment my diverticulitis is really playing up i think its the Prednisolne doing it dispite the omeprazole. LOL sounds like a Competition I see the Rheumy and throat specialist tommorrow so hope to get sorted out with the meds. Take Care
Colin