any experiences of taking long-term oral steroids?

[imaginaryfriend]

I've just been prescribed Prednisolone 10mg a day for the foreseeable future. It's for a chronic inflammatory condition on my lungs. Without them I'll risk long-term irreversible lung disease but I'm feeling so reluctant to take steroids long-term because of their side-effects which are, as I'm aware through googling so far: thinning of stomach wall leading to ulcer, thinning of the bones leading to osteoporosis, mood changes, weight gain and round face, reduced resistance to bugs and the loss of the body's natural production of steroids meaning that if you stop taking them you can be in serious trouble.

So I'm really hoping someone can put my mind at rest on any of these points. Or tell me the reality of taking them if they are truly awful.

yes If my steroids go below a certain level I have all the signs of addisons.

That's very depressing for you bc. This is what I hate about drugs, they always lead to something else going wrong.

The thing is any inflammatory condition has the potential to do so much damage that the steroids are preferable but the effects are annoying and unavoidable

What kind of damage can inflammatory conditions do?

I got my prescription this lunchtime. I still haven't taken any

like frogs I am on azathioprine which causes hair loss in conjunction with steriods but without them I don't actually remember hair loss.

One thing worth talking to them about, i remember I ended up taking a dose every other day as it was enough for me and it minimised side effects

(oh frogs I have been on and off them for 20 years, sometimes big doses, like you out partying all night etc. I was scared of bone density scans too but you really should go as there is something they can do about it if it is getting bad, I have corrected mine with diet and exercise, they can medicate too. Better to do now before it is irreversible. Apologies for the lecture!)

That's worth remembering CD, thanks. Do the side effects begin immediately or after a few weeks? Do they become worse the longer you take the tablets?

You won't get many at 10mg honestly
You will prob feel more hungry and a bit euphoric when you take them that's all

it might be worth asking if you can have a bone density scan now (as a sort of marker)

I had one done and was very surprised to find out I was osteopenic (precursor to osteoporosis) too. If you know, you can do something about it!

IF, I've been on steroids for about 7 months because of exacerbation of asthma, which they say is hormone related - ds3 is 9 wks old. Interestingly, I had some allergy testing recently and was told that I am allergic to a tree fungus. Also I was in hospital 3 wks ago with pneumonia. Sounds a bit similar to you.

I'm currently on 15mg/day, but this has been up to 60mg when my asthma is at its worse. After each little flare up we try to wean me off (or at least down). My benchmark is keeping my peakflow above 400. If it stays above 400 for a week, I come down another 5mg. Currently my peakflow is 350 so I have to stay at 15mg for a bit (but at least it didn't go up I suppose).

Regarding side effects, I have just this week noticed my face looking a bit rounder, which I'm not impressed about. Weight-wise, I'm about the same as I was when I started, which considering I've had a baby isn't too bad. I do have an increased appetite though, guess I must be burning it off. I don't notice the euphoria some people speak of, but I do get a 'come down' when my dose is reduced, ie I feel a bit depressed. Generally I'm more moody, but that could well be because of pregnancy and new baby hormones.

Btw, a couple of months ago I was prescribed calcium tablets to take in conjunction with the steroids, with the aim of reducing my chances of getting osteoporosis in later life. It might be worth asking for this too.

Right I'm off to look up broncho-pulmonary aspergillosis. You might just have diagnosed me!

Hi fox

kinki, Aspergillus isn't a tree fungus I don't think and Aspergillosis is not just an allergy, it's a chronic inflammation in already damaged lungs. But your symptoms sound quite similar to mine. I had pneumonia twice - last October and this February, the latter being much much worse. I haven't been right really since then and have had some serious horrible asthma attacks. I've been put on 60mg prednisolone after those too but only ever for 5 days in a row. So I've never had the side effects of long-term steroids.

There's apparently an anti-fungal medicine you can take alongside the steroids but my consultant was reluctant to use it as he said it's very toxic.

Does anyone know if it's ok to take Neurofen Plus at the same time as steroids? I've taken them today but without the Neurofen I'm feeling awful...

NO you can't take neurofen or aspirin as it increases the risk of stomach ulcers

can I crash the thread with a few questions for you all
my son takes high dose steroids and doesn't get half the care you guys seem to get alongside the roids. eg no bone scan even though i keep asking for one like they give in us/aus etc etc, no extra calcium, no wristband (you can get posh ones made yourself btw ). so do all of you on roids get this kind of stuff? with paed already!!

anyhow, getting back to op, i would guess that 10mg will be barely noticeable as ds1 is on that now and is fine and he's 5 but it does seem to affect people differently. we find the tapers to be hard mood wise as well. there is a book 'coping with prednisone' that possibly might be useful for an insight into the effects and how to deal with them altho she is very very very strict about diet, more so than I could live with.

don't take the roids at the same time as the calcium either btw

Sorry IF, this is a crash as well, but DH had been taking 7.5lg of Prednisolone for several months for his psoriatic arthritis.. and then was recently found to have an active helicbactor infection (via blood and then stool sample) which I imagine is a result of the steroids messing his stomach k]lining up.

Anyway, he has been on a short sharp high dose course of two antibiotics and another drug for his symptoms.. (Lansoprozole).. and he came right off the steroids witout weaning himself down.

He's now finished the antibiotics and is only taking his weekly arthritis drugs (methotrexate) and pain relief when he needs it. Should he have weaned off the steroids slowly do you think?

(mg not lg!)

No problem with people crashing the thread but I have no answers to your questions as I'm totally new to this steroid business.

I haven't got a wristband yet as I've only taken the steroids once today so far.

I've been doing tons of research though into aspergillosis and it seems the first drug of choice is an anti-fungal called Itraconozole and I don't know why the consultant hasn't put me on that rather than steroids. I think I'll have to go to see the GP to get this checked out.