lowering steroids, advice please?

suzster

hi all,
i've been on 15mg of predisolone for just over 3 months and a few weeks ago i've was told by rheumy to start reducing it. i'm been doing this by reducing the dose by 2.5mg every 2weeks. so far so good, but i was warned that when i got down to about 7.5mg my body may start complaining and if it did i may need to reduce it slower. i didn't understand what she meant, so thought i'd wait and see!

this week, well last sunday (10th) i reduced it to 5mg and this morning i feel terrible. all my joints are aching and i feel sick, is this normal? i would ring my rheumy nurse but it always takes her at least a couple of days to return my calls.
i've asked my dr to ring me so will see what she says later, but i just wondered if any one had any experience of this? just so i know if it probably is reducing the steroids that is causing it or maybe it's a flare? i haven't had a flare since starting the steroids so i guess they are to blame!
any advice would be great.
sue

annie_mial

Hi Sue, sorry you've got problems with reducing the steroid dose, but it is true that the lower the dose you are on the harder it is to get down even more.

This is because the lower the dose, the higher the percentage you are dropping by.

I have found that I need to do it very very slowly and by that for me is snail's pace. There are several different ways of tapering slowly. Do you have any 1mg tabs? They are not enteric coated, but I have found them invaluable for tapering purposes.

If you only have the 5mg and 2.5mg, then the best way I have found is to lower slowly over 3 weeks; it does take a bit of working out and I use the calendar for mine. What you do is take the lower dose every third day for two weeks, take the lower dose alternate days for two weeks and drop the higher dose for the third week. I have had horrendous probs with dropping the dose myself and have found this method very good. It can be made to work even more slowly if necessary.

Some peeps find 7.5 is the sticking point and some 5. Mine is 10 and it has just taken me almost a year to get down from there to 3.5 per day. I console myself by saying that[/i] overall the amount taken is going to be lower whichever way you are doing it.

Would suggest you go back to the 10mg for 3/4 days or until your current symptoms subside and then have another go along those lines?

Hope this helps.

Annie

suzster

thanks annie, i'm hoping i can stick to it, purely because i've seen on my x rays how much damage they are doing my already weak hip, but i guess i have to take it as slowly as my body needs. i wish i'd been made more aware of these physical problems when the nurse advised me on how to lower the dose. still hopefully the dr can prescribe some 1mg tablets, i think that could help from what you are saying.
thanks again, really appreciate your advice.
sue

bailey27

Hi
I have been having this problem for the past year. I always get to around 7mg butthen starting flaring up again. I had a big flare last after dropping to 5mg but have been told to do it even slower.
I was on 25mg to start and dropped by one mg a week. when i got to about 12-15mg i started having problems and so was advised by my pharmacist to stay at 10mg for one week the following week alternate days 9mg one day then 10mg the next. after a week of doing this to then go 9mg a day. then the following week 8mg one day then 9mg the next. then 8mg every day.... catch my drift. I feel ok at this pace so far. it seems to be a lot easie. hope this helps.

cthornley

I was on 30mgs whilst conceiving, in pregnancy and whilst breastfeeding my son (nigh on 2yrs in total) and I remember what a nightmare it was coming down and finally off it although it was nice to get my face back to the right shape
sorry I can't advise anything more than what the others have said except perhaps talk to your doctor about it and see if they have any suggestions
Hope you manage to get past the biting point , hugs in the meantime
Chrissie

c4thyg

Sue, the body naturally produces about 10mg normally. When we take pred above that level though our body's stop producing it. So when you start to drop below 10mg you need to take it slowly so that your body can start to produce cortisol again. I can assure you that this feeling will pass as your body compensates. The key is to taper as slowly as you need to.

I stopped getting any benefit once I tapered to 40mg and once I hit 7.5mg it was really hard going. In the end I just stopped them and waited it out. Don't do that without your GP knowing though. I tapered from 60mg over 6 months or so so I just got fed up in the end! :roll:

Hang in there and let your body reset itself.
Cath xx

dreamdaisy

The steroids mimic your own body's production of corticosteroid, hence the reason why one should really take them in the morning as that is when your body does its stuff. (Thank you, scattered, for teaching me that!) I often wonder if the longer one is on a higher dose the lazier the body becomes, ie makes less and less. Given the nature of the other meds we swallow/inject, perhaps our bodies get used to the added artificial steroid and give up producing, hence the need to reduce slowly to spark it back into life. I now realise that I cannot cope on anything less than 10mg per day - I have tried a number of times in the past, rung the rheumatology helpline for advice as I have ground to a halt and the answer is always to increase them. This is one roundabout from which I am removing myself: nothing below 10mg so I can remain under the illusion I am coping. DD

salamander

hi Sue, I've had real problems reducing like you and Annie. I dropped by 1mg every 5 days, or something like that, maybe it was even a week. The 1mg tabs are not enteric coated and gave me the most appalling indigestion so my gp gave me soluable pred which you draw up the right dose in a syringe and swallow that (not inject!) No indigestion at all. Unfortunately, I can't seem to get off them at all.

I wouldn't do anything til you've cleared it with your gp or consultant.

suzster

just spoke to my dr, she wanted me to go back to 7.5 until i feel better, but because, as i said to her, i really want to get of them she said i can try getting some 1mg and taking 7 for about a week then go down to 6 and see how i go, if i feel ok i can continue to lower by 1mg weekly if it's ok or 2 weekly if need be. so at least she was understanding and helpful.
so i'm off to try my rollator / walker and get my prescription, good excuse to get out and just do it!
sue

cythna

Hi! This is my first post, "waves".

I'm currently reducing pred at the rate of 1mg a month! I'm meant to be on 4 at the moment, but I've had to stop the Humira for an infection, and went back into flare, so I'm taking a bit more again. You know how you always forget what the pain is like until it comes back? I'd just go very slow, you're more likely to be successful that way.

suzster

cythna wrote:

Hi! This is my first post, "waves".

I'm currently reducing pred at the rate of 1mg a month! I'm meant to be on 4 at the moment, but I've had to stop the Humira for an infection, and went back into flare, so I'm taking a bit more again. You know how you always forget what the pain is like until it comes back? I'd just go very slow, you're more likely to be successful that way.

thank you for the reply cythia, and i'm waving back to!

my gp has told me to go back to 7.5mg or 7mg and then decrease by no more than 1mg a week, i know slower is better, i just so want them out my system. it wouldn't be so bad if i hadn't seen and felt the effects of them thinning my bones.
i'm trying my best to remain, well be calm and do it how they say, so hopefully i'll be ok.
sue

p/s.
don't tell my gp i've only gone up to 6mg not the 7mg she wanted me to, the pain isn't to bad, if it gets worse i'll do as she says, honest!

tillytop

Hi Sue - and hi Cyntha and welcome to the forum!

Oh it can be such a struggle cutting down on the steroids can't it? In my view they are "a blessing, and a curse". I'm taking a goodly dose of pred at the moment and it's doing great things for the RA BUT, it is going to be very hard coming down again and not looking forward to it.

I agree though, you just have to come down very slowly.

In the past my rheumy has given me a really, really slow reduction plan and it has worked for me. If you'd like the details, please pm and I'll send them to you (it's a bit complicated to detail here).

Good luck with it though Sue.

Love Tilly xxx

suzster

tillytop wrote:

Hi Sue - and hi Cyntha and welcome to the forum!

Oh it can be such a struggle cutting down on the steroids can't it? In my view they are "a blessing, and a curse". I'm taking a goodly dose of pred at the moment and it's doing great things for the RA BUT, it is going to be very hard coming down again and not looking forward to it.

I agree though, you just have to come down very slowly.

In the past my rheumy has given me a really, really slow reduction plan and it has worked for me. If you'd like the details, please pm and I'll send them to you (it's a bit complicated to detail here).

Good luck with it though Sue.

Love Tilly xxx

could you pm me with it tilly? just so i can see how you did it as my dr although good wasn't ever so helpful, she didn't seem to understand i really want to be off the steroids!
thank you
sue

tillytop

Hi Sue - pm on the way! Will do it now.

Love Tilly xxx