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?

noddy, I was told 60mg a day til today, then 30mg for a week then I have to wait for my clinic appointment to see what to do next.

kew, you didn't say what you're on them for? I feel the same, I need to get my FBC checked when I'm not on the prednisolone so I can see if things are really settled down or not. I've got very shaky hands too, there was no way I could fill the salt pot yesterday when dp asked me to. What's the weird taste by the way?

I'm on 70mg for a recent (new) and dramatic episode of ITP (produced antibodies which kill my platelets and therefore didn't clot at all - check out profile pictures!)

They have no idea if its a chronic conditionor one off acute case.

I get a really bad peppery/metallic taste in my mouth which builds up during the day and by evening is really quite dominating.

Half dose for next week sounds good, though a bit dramatic - I had assumed they would take it down say 5mg oer day or somethign liek that.

I think halving is ok if you haven't been on them years.There is a form of withdrawl from steroids that some people get.I feel invincible on big doses and fall apart on less to start with but have persevered and got them down Good luck xx

I haven't had the bad taste in the mouth. I feel very nauseous in the mornings though, like I need to retch all the time. It takes until midday to settle down. I guess that's the effect of the steroids on the stomach lining?

I'd never heard of ITP before I just looked it up. So did you just suddenly start bruising otu of the blue?

noddy I think the plan for me is to stay on a 'maintenance' dose indefinitely. I've been trying to avoid it since I was diagnosed with the lung condition almost a year ago now but this last episode has really knocked me for six.

I'm on omeprazle to counter effects of the pred and the 3 AB's so I doubt I'd get the sick feeling. AHemotology say I should be on antacid as long as I;m on the steriods.

There'sa thread on what happens last week somewhere - I'll link - it will be quicker than explaining!

I take 5 one day and 10 the next atm.I feel well and increase to 10 a day if I am unwell and sometimes I take extra for a few days if i have a lot on.I have been on them since 1984

There you go...

"yes out of hospital at last. Advantage of being in a ward of properly sick people is that they have registrar on duty at all times and senior enough to discharge you over a weekend.

Janni - completely out of the blue - no previous symptoms, illness no warning. Came up in a meningitis type rash last Sunday am, then gums started bleeding then starting bruising really badly. Felt absolutely fine though a bit uneasy about rash as I know rashes that don't go away when pressed against a glass are deemed "not a good thing". Discussed with a fellow MN'er (hello Stepford wife) who we were having coffee with that morning and it was decided that casualty would on balance perhaps be a good idea. Rang another MNer who I was supposed to be having lunch with (a rare socialite day that day) and said "will probably be a little late for lunch"! Dropped D of at my mums and drove to Charing cross hospital.

After waiting hours to see doctor then hours to get results of blood tests, was informed there have been a problem with the quality of the tests that they were somehow contaminated and I needed more bloods done (cue two more hours waiting for results) at which point they realised that the zero platelet count was not a result of incompetant lab but due to me not having any platelets.

Was guided to a bed at that point and nurse detais to follow me around with a soft duvet and on no circumstances whatsoever was I to fall over or bump myself.

Apparently having no platelets is also "not a good thing" and nervous A&E staff prefer patients that have some."

Rapid transfer to specialists haem unit when platelets didn't perk up on being bombarded with various treatments and finally relaeased afetr bone marrow biopsy determined it wasn't anything really really horrble just very stubborn ITP.

kew that sounds so scary

Noddy, that dose sounds very similar to what I'll be likely to have to take. They thought about 20mg a day although I'd like to think I might not need to do it constantly, that I could have breaks off them altogether.

kew, that does sound scary. Are you sure you're well enough to go back to work so soon??? Have you felt unwell with it / when it first started? How long were you in hospital for in the end? I had 5 nights. Horrible. Including some industrial strength antibiotics the consultant described (helpfully) as 'good old domestos'.

first three days when I didn't respond to anything and platelets hovered between 0-2 where a little stressful.

Bone marrow biopsy hwasn;t great but effectivley ruled the real nasties and when they bombarded me with everything all at once, everything picked up quite nicely and the fuss was here and gone within a week. Literally 7 days in hospital from right as rian no symptoms to "oh shit she's high risk of spontaeously haemoragging" to to right as rain but doped up to the eyeballs! Surreal.

Scary being a single parent in that postion though.

auto immune conditions are a nightmare

Oh yes, a nightmare kew. I don't know what I'd do if I didn't have dp around as I have virtually no family and the bits I do have are hundreds / thousands of miles away. It is very very hard being ill like that when you're a mum.

I have felt fine (physically) the whole time. ONly "ill" feelings I have are enitelry due to steriods and various antibiotcs but I finish two of the AB's today Hurrah!

TBH I'm depsarate to get back to work and some kind of normality. Will work a shortish day MOnday thenhave to have tuesday off for more bloods and consultant then will work Weds thurs only as I never work Fridyas. Hoepfully that will be managable.

And anyway year end starts next week and I;m the bleedin finance director and were already way behind because I've been off two weeks!

noddy, my poor dd is already suffering with autoimmune problems and has a severe nut allergy. It seems to run in my family.

kew - did you feel ill though? and how the hell are you going to go to work on Monday?

x-posts kew re. your feeling unwell.

"I;m the bleedin finance director" probably not the best description in the circumstancs

Very common to feel absolutrely fine with ITP and normally blood counts maintain someehere reasonably sensible. Below 10 is really generally considered not a good idea though.

It is one of the areas where teratments are developing all the time so fingers crossed for your dd.My immune system attacked my kidneys twice and heart once.Atm I am well-ish and prednisolone do help

It's weird isn't it to think that you get attacked by yourself so to speak. One of my dear friends developed autoimmune hepatitis and is currently terminally ill with it. Also out of the blue. Dd seems to be fine at the moment but there have been 2 terrifying occasions now where her allergies have become life-threatening.

You know, nobody suggested I take anything like omeprazole with the steroids. I'm a bit annoyed about that.

I thought it was reasonably common to be prescribed the two together but perhaps only if you are on high dose steriod. How much did you say you were taking?

I would have thought nausea alone would be enough for you to ask for omeprazole.

60mg to start, now down to 30mg today. I don't think I'll be off them completely for a long time though.

Actually I've got an appointment with my GP on Wednesday so I might ask her to prescribe me some omeprazole then.

If omeprazole lowers the quantity of stomach acid though, how do you fight off things like stomach bugs?

I think it does inrease risk of certain infections like salmonella but not significantly - perhaps you could try the lowest dose.

Hope you feel a bit steadier soon IF. I get the shaky hands too.
It is so hard being ill as a mum isn't it. Esp with a chronic condition. Even on better days it's never not there iyswim.
Know what you mean about being annoyed re not being given info about stuff to take while on pred. It seems we often have to find out this stuff for ourselves. sigh...
Hope you're not getting an infection. take care.

Thank you madhair.

I've had a rubbish day actually, I've felt like my emotions are really all over the place, very volatile, tired and impatient. Not myself at all. I don't know if it's down to reducing the steroids or what it is.