Is anyone familiar with taking prednisolone or other steroids on a regular basis?

[imaginaryfriend]

I've just been really ill with pneumonia and came out of hospital yesterday.

I have asthma and a condition called Bronchopulmonary Aspergillosis which is why I keep getting the chest infections. I've now been told to take prednisolone regularly, starting on a high dose (60mg) for a week, then halving it (30 mg) for a week then finding a maintenance dose of about 20mg indefinitely.

I've been googling it as a medicine and am quite worried about some of the side effects but I can't work out at what dose these are most likely to occur and if they always occur.

Anyone with any experience?

IF - I feel your pain. I cried in publci today (admiedly my cat isvery very sick and may not live) but I donlt Do crying in public. I feel like I did when I was having IVF.

IM don't know how helpful this is but my dd who is two is steroid dependant she is on hydrocortisone and fludrocortisone and although she is only on the doses her body can't make on its own, when she has a high dose for a while(ie when she is ill) she gets really emotional when the dose is lowered, in fact she once became hysterical for hours and it was a kind of withdrawl so now I cut her back down to normal doses. So very different circumstances but just wanted to share our experience and say that feeling like that must be norma and will pass when your body readjusts. Hope you feel better soon.

IM don't know how helpful this is but my dd who is two is steroid dependant she is on hydrocortisone and fludrocortisone and although she is only on the doses her body can't make on its own, when she has a high dose for a while(ie when she is ill) she gets really emotional when the dose is lowered, in fact she once became hysterical for hours and it was a kind of withdrawl so now I cut her back down to normal doses. So very different circumstances but just wanted to share our experience and say that feeling like that must be norma and will pass when your body readjusts. Hope you feel better soon.

Shameless hijack www.mumsnet.com/Talk/1375/616363

That's a really moving film kew. Dp is adopted and we've often thought of adopting a 2nd child seeing as we probably can't have any more - we weren't meant to be able to have any so dd has always been a bit of a 'miracle.'

How are you doing now though? Any news on 'your condition'?

I have my first outpatient appt on Tuesday - I assume they will take bloods and assuming count is still up (and no reason to beleive it isn't) they will bring steriods down and monitor weekly. If all goes well I susect that I will be able to come off then and either go back to normal or close enough to normal to not need the steriods.

Fingers crossed.

How's the new dose going Kew??

Godivas was it inflixmab (remicade) your dh tried? Apparently I am going to be given this if I get another attack. Sorry to hear it didn't work

Has he tried taking azathoprine? That has kept me pretty well for 10 years (apart from when pg)

don;t have a new dose yet CD - first outpatient appt tomorrow. its my assumption they will start bringing dose down as I can;t think why they leave it this high for long. There's every chance I can manage without and I know they don;t take these high doses lightly - fingers crossed.

oh sorry I thought I read they had halved your dose

no that was imaginaryfriend. Can't imagine they'd halve me from 70-35 so quickly but hoping they might take it down 10mg per week as a minimum. Was told to expect to be on high doses for a month (I assume in the 40-70 range) so reducing 10mg per week would be about right.

Don;t even know why I'm speculating as I'll know tomorrow!

CD just a quick hijack Do you have any side effects with azathioprine?

no, never have had

I was on 150mg for years and have been on 50mg for about 3 or 4 years

I have new empathy for people on these kinds of medications now. I've only been on the damn things 10 days and am whining like a trooper already.

Problme is I didn;t feel sick until i started taking them, so hard to feel that I'm getting any benefit. (apart from the not dropping dead bit)

When you come off them completely, how quickly do you reduce the dose? I'm fed up. I want to stop them.

I found a good american website which gave suggested reductions, I'll try to find it later and get back to you.

Thanks kew. How's the day at work going?

Contrary to what I always believed about steroids, that they would give you lots of energy, I find myself barely able to focus and stay awake. And my mood is simply dire, like PMT and a hangover all at once.

Late to this thread, haven't time to read it all. I've been on pred since April with auto-immune thing affecting my optic nerve. Consultant is trying to work out which is the lowest dose I can stay on without my symptoms flaring up again it seems to be 20mg. I've just had a relapse so am back on 40mg and will slowly reduce the dose over next few weeks to get back to that point. Doc hopes to get me onto a steroid-sparing agent does the same job but in a different way and with fewer sideeffects apparently -- but it's taking a while to find out which one will work best for me.

My appetite rockets on the higher doses. I'm fairly greedy normally, but not so I wake up and instantly think: gotta shovel in some food. It's revolting. Have put on loads, mainly on face. Have also grown weird dowager hump.

My periods have stopped.

The strange taste in the mouth comes and goes. I get it more on lower doses I think.

All these things, I'm told, will go when I get off the f*ckers.

You should probably push for a bone-density scan if you're going to be on them for any length of time.

I'm fairly greedy normally, but not so I wake up and instantly think: gotta shovel in some food - are you me? [suspicious emoticon]

A friend who is a paediatric oncologist says tiny children on prednisolone wake up the wards at 3am howling, 'Pasta!'

How are you today IF - sorry you've been feeling so rough.
I don't always have energy on pred, quite the opp sometimes in fact. I get moody, tired, hormonal, even spotty, as well as the gorgeous moon face look. It's pretty tedious at times. But then I remind myself that without them I'd be dead, so kind of puts it into a bit of perspective. Hard tho.
Hope you;re ok too Kew.
When I come off them I decrease only by 5mg every few days, any more than that my system seems to go haywire. So can take a v long time if on a heavy dose, but only way. Different docs suggest different things tho, one said it was fine to just stop. ummmm...yah. My consult at the Royal Brompton said he was talking crap and suggested the slow decrease. But then, every body is different in reaction so coming down more quickly may be fine for some.
soory if this doens't make sense. Getting chest infection, yippeee

This is one of the things I found on reducingdoses...

"Do not suddenly stop systemic steroids; your doctor will explain how to gradually come off them (particularly important if you have been on them for more than six weeks). For example:

No tapering is necessary if the course of steroids has been for less than one week.
After taking a dose of 30 mg or more per day for 3-4 weeks, reduce the dose by 10 mg or less per day, taking days to weeks to stop altogether.
A much slower reduction in dose may be required if the medication has been taken for several months. "

But I know some doctors say if you are on more than 40 you need to take it slower.

Well I haven't felt the slightest increase in hunger, mostly I've felt quite sick and not like eating anything at all.

Thanks for the reduction advice kew. I hope you have good news from your consultant tomorrow. Do let us know? How did you manage at work today? And how did that little boy of yours cope when you were suddenly so ill? My dd was dreadfully worried but she's nearly 6 and it's an anxious kind of age.

madhairday, I hope you're not getting an infection! In between infections do you come off steroids altogether? How many times in a year do you need to take them?

I've had such a rubbish day today. And I haven't had my consultant appointment in the post yet so I don't know what the future will be just yet. I do have an appointment to see my GP on Wednesday so I'm going to ask her if I could possibly try to cut down the pred. If I flare up again then I'll take them again but I might as well try to stop if I can. My cough / breathing / fever is so much better now.

yep, we had the whole waking up in the middle of the night screaming for food with ds1, also refusing to go to sleep til about midnight but sleeping for hours during the day,having horrendous cramps and screaming in pain, unable to walk more than a few metres at a time. steroids can be awful on v high doses, esp for little ones. but they do work.

re tapers. there are about a million ways to taper so it often comes down to personal response. ds1 has tried a wide range of tapers, from sudden to extremely slow. it took over a year to get him off after his last relapse. but we did it in the end

Kew - how did it go? I've been thinking about you.

I halved my steroids again today and feel like I've got a hangover.

IF I do try to come off pred between infections. It really depends on how many I get, for instance over the winter I was on them for 6 months solid with lots of other stuff trying to beat a pseudomonas bug, but since have only been on for 2-3 weeks about 3 times. So am on them a lot I guess, but try to get as many breaks as I can. Have not been on them for nearly 2 months now which is a bit of a record! yes have an infection now but always wait to see if the abs sort it before going on the pred, hopefully they will, on cipro.
Hope you are ok, cutting down can be awful