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any experiences of taking long-term oral steroids?

(44 Posts)
imaginaryfriend Thu 01-Nov-07 14:52:12

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.

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imaginaryfriend Thu 01-Nov-07 15:00:34

bump

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policywonk Thu 01-Nov-07 15:05:37

Sorry to hear about your illness IF. My mother has been taking steroids on and off for five years to deal with the symptoms of her lung cancer. Unfortunately, some of the symptoms you list sound pretty accurate to me - she really doesn't like being on them, but can't stay off them for very long because of her symptoms. Mind you, she has to take pretty high doses (don't know how it compares with yours I'm afraid).

However, she has come off them a few times for several months at a time, so it can be done - you just have to cut down gradually and under your doctor's supervision.

On the bones point, she has bone scans regularly and her bones are in pretty good shape, even post-menopause.

One of the things to remember about huge lists of side-effects is that these are ALL of the things that MIGHT happen across a population taking a certain medication - it's not a statement that you, personally, will experience all (or most) of the effects listed.

imaginaryfriend Thu 01-Nov-07 17:51:43

Thanks pw. Do you know what kind of dose your mum was taking? Did she have all of those side effects?

Yes I know about lists of side effects it's just that it seems, in general, those that I listed seem very common.

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policywonk Thu 01-Nov-07 17:59:33

I will try to find out about her dosage and let you know. I know that it fluctuates - she takes very high doses when she is having radiotherapy, for instance.

In terms of the side-effects you mention, she hasn't experienced any stomach problems or bone problems, and I don't think she has suffered particularly from lowered immunity (she has had loads of chemo anyway so her immunity gets affected by that). She does get mood swings (she feels much less in control of her emotions - gets weepy and angry very easily, thankfully not usually at the same time!), and she does have the characteristic steroid shape now (round face, weight around middle, slimmer arms and legs).

CountessDracula Thu 01-Nov-07 18:00:16

if, I have been on steroids on and off for years due to Crohn's disease. Usually a much higher dose than you but while I was pg I took 10-15mg a day for 18 months and as it was such a low dose I didn't get any of the symptoms though I was osteopoenic afterwards (not as bad as having osteporosis but on the way) which I have now remedied with diet and exercise.

Re the body not producing its own steroids, this only happens if you come off them too rapidly, you have to tail them off gradually. It does affect your adrenal glands which produce the natural steriods, I got mine sorted with some western herbal medicine a couple of years ago and felt a lot better afterwards.

I would say 10mg is not such a high dose and the alterative, ie long-term irreversible lung disease, would be a lot worse than having a chubby face and being a bit moody

HTH pls feel free to ask me any qs

imaginaryfriend Thu 01-Nov-07 18:11:45

10mg is the starting dose but I'll probably end up on 45-50mg a day. I just heard from a friend with MS who said she has to take 500mg a day when she's having a relapse so I do feel a bit of a fool making a fuss about such a much lower dose.

I don't mind the 'moon face', thick waist, etc. I do worry about the stomach problems because I have terrible troubles with digestion and am an emetophobe to boot. The mood swings also trouble me as I'm a nervous wreck as it is without turning 'manic.' And generally I'm just not enjoying the thought of having to take medication indefinitely.

But no, of course, I wouldn't risk long-term lung damage for any of those reasons.

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CountessDracula Thu 01-Nov-07 18:17:03

Is it sarcoidosis?

A friend of mine's dh had this many years ago. He was on prednisolone for a few months and then got better if that is any comfort.

I won't lie to you, the side effects are horrible (i have always felt that the worst thing about having crohn's is the side effects of high doses of steroids). I have not had stomach problems at all btw or ever been sick due to the drugs. The effects I have had are massive weight gain (3st in 3 weeks when on IV ones in hospital!!!), hair falling out a bit, growing a moustache (nice but waxable of course), hamster cheeks (oh well, they go when you come off). On the plus side you have a fabulous appetite so make sure you go out for lots of nice dinners wink

Roseylea Thu 01-Nov-07 18:24:47

I've also got Crohns disease and have taken prednisolone on and off for 12 or 13 years. I have to have an annual bone density scan to check for signs of osteoporosis - so far so good!

Doctors are careful about prescribing steroids, esp. long term, so if you've been prescribed them you need to trust your doctor's judgement (IMHO of course) and weigh the possible side-efect health risks against not taking them. As CD says they do have possible side-effects (although I've been quite lucky - I've not had any that CD has) but they do work very effectvely!

Hope that helps. Again, feel free to ask anything.

imaginaryfriend Thu 01-Nov-07 18:30:17

CD, I'm very underweight so a bit of flesh on my bones would be quite welcome. But 3 stone in 3 weeks?! How high was your dose?

Rose, what dose are you taking?

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donnie Thu 01-Nov-07 18:33:29

my dad ( he's in his 70s ) has been taking oral steroids for nearly 3 years now because of rheumatic conditions. At first he was on 10mg daily and he did out weight on, but not a great deal. Unfortunately I don't know the name of the one he is on. He has gradually come down to 1.5 mg daily and the effects are still good. he has a consultation cominmg up soon to see if he can start taking them every other day.

Sorry not very illuminating but they have really helped him.

CountessDracula Thu 01-Nov-07 18:33:41

oh I was on them intravenously so not sure, but pretty massive I reckon! I was so thin when I went in to hospital but that was soon fixed wink

imaginaryfriend Thu 01-Nov-07 18:34:21

By the way it's not sarcoidosis it's called chronic broncho-pulmonary aspergillosis. I didn't mention the name because nobody's ever heard of it. I have severe asthma (have since childhood) and have developed an allergy to the aspergillus fungus which is basically all round us so I have chronic inflammation in my lungs, two really serious episodes of pneumoia from it this year which have left me hospitalised and really unwell with scarred lungs. I can't actually remember the last time I felt like I had energy or didn't feel like I was coming down with flu, i.e. aching, shaking, sweating all night.

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imaginaryfriend Thu 01-Nov-07 18:38:01

CD and did you keep that weight on or did it come off when the steroid dose was reduced?

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Roseylea Thu 01-Nov-07 19:04:13

You poor thing IF! It really sounds like you've been through it. If I have a flare-up of crohns it can be brought back into line with 20-30mg pred, and my doctor always gives me a dosage reduction plan right from the start so that the idea is always that I'll come off it soonish but safely as CD says. I tend to be on it for a few months at a time, then hopefully a good few months off.

I had a nasty pneumonia 2 years ago - I was in hospital for 3 weeks and it took a long time to recover (I had a pleural effusion as well as pneumonia in both lungs and one of my lungs was punctured during an unsuccessful chest drain - not good.) I've had a few very heavy chest infections since then, so I sympathise - it's not nice at all.

CountessDracula Thu 01-Nov-07 19:10:18

oh no it came off
it is all water retention

However the increased appetite means that you can gain weight more permanatly, I did get peed off with repeatedly having to shed a couple of stone after 6 months on steroids

Still, it's better than being ill and feeling awful

imaginaryfriend Thu 01-Nov-07 20:41:14

Yes, I agree. To be rid of this permanent ill-feeling would be worth things like weight-gain. I don't know how I'll cope with stomach problems and mood changes though. They're the part I worry about.

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imaginaryfriend Fri 02-Nov-07 09:45:43

any further advice on this on a bright sunny Friday morning?

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bodycolder Fri 02-Nov-07 09:49:41

I have been on prednisolone for 20+ yrs.You do eat more and it can cause thinning of skin and bones.I have not been able to reduce them to the recommended max of 7.5 as I get really ill as my body no longer makes its own and I get all kinds of flare ups if i try.I am on 10mg atm but need to really diet to keep my weight reasonable.Stomach and bone problems are treatable Skin and infection probs aren't.

frogs Fri 02-Nov-07 09:51:21

Pretty much what CD said. I was on 70mg prednisolone for about two years and at that level you do get lots of side-effects. But you do lose the weight when you come off them, though you must be careful about tailing off slowly. I suspect at 10mg a day the body's own production wouldn't be knocked out to the same extent -- at higher doses is is more of a problem if you eg. get a vomiting bug. They used to give you a little blue card with the prescription to carry around in your wallet -- not sure if they still do this.

Steroids are not great, but generally only prescribed in a situation for which there is no alternative, so you just have to get on with it, really.

imaginaryfriend Fri 02-Nov-07 10:18:52

bc, what are you taking them for, if you don't mind me asking?

frogs, yes what do you do if you can't keep them down? Do you become dangerously ill? Or if you miss a dose for a day is it dangerous? Or is it if you stop suddenly and drastically? Do you mind me asking you too what you took them for? They now give you a wrist band to wear.

Does anybody know how common it is to have to take them long-term?

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frogs Fri 02-Nov-07 10:30:37

if, I would have thought that on 10mg with no other medical problems the chances of you having a stomach bug severe enough to cause problems are fairly small. Even at 70mg things only got a bit hairy after two or more missed doses, and I had all manner of other stuff going on to cause extra problems.

I took steroids along with other much more toxic immunosuppressants for a rare but potentially life-threatening auto-immune disease. I was young and foolish, and really hated the side-effects of steroids and the restrictions all this was placing on my life, so I used to get creative with my dosage. I was never in fact taking quite what they thought I was taking in the quantities and intervals I was meant to be. This is not a good idea, nor is staying out all night and/or drinking far too much, but I'm still here to tell the tale. But I don't dare to get a bone density scan done, as in those days they were far less aware of that issue and didn't give you extra calcium.

10mg really is not a large dose, and I wouldn't have thought it would be likely to cause adrenal insufficiency problems from one or two missed doses. Steroids are not actually that scary -- not nice, but liveable with, particularly if you're not an immature 18-yo struggling with a whole raft of complicated and unsexy medical issues.

Wristband, yuk. How foxy. grin

imaginaryfriend Fri 02-Nov-07 10:49:41

Frogs - I'm already trying to work out how I can make the wristband look sexy ...

So are you recovered now? You don't have to take them any more?

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frogs Fri 02-Nov-07 11:00:44

I took the steroids during the acute phase, which was a few years. I also had several bouts of surgery, and was on the other drugs for much longer -- eventually tailed off the azathioprine a couple of years ago, so 18 years or so of medication in total.

Fun. Not. But if you have no choice, there's no point getting too wound up about it.

I'm hoping the wristband is one of those trendy silicon ones in an attractive colour, maybe with 'Steroids' on one side and 'Serenity' or 'Peace' on the other. No? Shucks. grin

bodycolder Fri 02-Nov-07 11:05:24

I am on azathioprine too.I have never taken more than 12 mg of steriod but I was diagnosed with seconday addisons(adrenal insufficiency)about 2 yrs ago.I have had 2 renal transplants one in 1985 the other in 2000.I agree they are necessary in some cases and for me the benefits outweigh the effects tbh.

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