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?

I've had it quite badly 3 times in the last 2 years, probably because of my underlying lung problem. It's bloody miserable and really does knock you for six.

Thanks for the advice though.

Anyone else with more info?

bump

Hi imaginaryfriend,

Sorry to hear about the pneumonia, I know a friend who had it and, like Fio, it knocked him for six too.

I was prescribed prednisolone for my rheumatoid arthritis, in the early days, after two trials of drugs hadn't worked. The side effects that are described in the leaflet are very scary, as on Google too.
For me, it really eased the pain and I slowly reduced the dose. It did however make me put on some weight, probably around a stone or so, over the course of the six months I was taking them. I can't remember the dosage to be honest, but I think 20 mg per day?

Luckily they found me a magic drug which makes me feel normal now, so I don't need to take them any more.

I think if it's just a short term thing, then I wouldn't worry too much. Taking any drug long term would obviously have worse side effects. It is important to wean off them slowly.

Good luck and I hope you feel better soon.

Thank you Annie. I think that given the side effects it's quite amazing that anyone continues to take the horrible things.

Any other info anyone?

My dd2 has taken this 3 times after she's had pneumonia but each time it's only been for 3 days. She has Di George syndrome and weak immune system hence the recurrent chest infections, she was hospitalised 18 times in a 12 month period.

Its the only one of her meds that she dislikes because of the taste. Other than that I can't help you.

there is a good book called 'coping with prednisolone' (or prednisone, can't remember) written by a woman who had to take high doses as you describe. she talks about side effects, diet etc

it doesn't sound like you will be on a very high dose for long, so that is good. ds finds the changes from one dose to another hard to deal with though. there are lots of not very nice side effects, steroids seem a bit of a blunt instrument

I would recommend trying alternative therapies alongside the steroids. i don't know the kind of condition you have - is it auto immune related? acupressure gets good press. be careful of chinese meds though - some have high levels of steroids in them so you double the dose, so to speak

micku5, I don't know how old your daughter is but you can give them tablets instead of the dissolvable ones. ds had the enteric coated tablets from about 3 years old - much much better. we had to ask for them though

I'm on 70 mg per day but hoping they will start cutting down soon. Only been on it a week so not much experience of it lonf term. Side effects aren't great long term but short term probably managable - but then I don;t have any choice at the moment so I don;t dweel too much on the side effects until/if they arrive.

I'm hoping that I will be able to come off them or witch to a non-steriodal treatment in time so am happy living in denial land.

You might want to ask for omeprazole as well if its not already prescribed.

Hi IF,dp has been on high dose steroids for the best part of the last year for an autoimmune condition.Initially he was having IV steroids plus chemo drugs for about 4 months.Then he was on 40mg daily.In the last couple of months he has been well enough for them to gradually taper his dose down.He is curently on 20mg daily.

He has had quite a lot of side effects due to high dosage,mainly insomnia,increased appetite,swollen face and legs,moodswings,easy bruising,altered taste.

However,if he hadn't had them he wouldn't be here now

He also takes a drug to counteract the effects of steroids on his gut as they can be quite irritant.

I'm sorry,I'm not being very reassuring am I ?He IS much better re the swelling/moodswings now his dose is tapering down.

Good luck xx

DS2 (10) has had it many times over the past couple of years.

It makes him very hyper, and extremely hungry; he has put on a fair bit of weight since being prescribed it.

I think the recommendation is for no more than 6 courses of it per year for children, and he is maxed out already this year.

He usually has it for five or six days, but when his symptoms are particularly bad, he has had it for ten days, and then he has to be gradually weaned off it over several more days.

It does work wonders to help him get over the asthma attack though.

We are concerned about him having to take it, but it does help stabilise his chest, so there is little option.

she's 2 now but it had the meds when she was between 15-20 months and she had to have the dissolvable ones.... it is a vile pink colour and i think that was enough to put her off taking the medicine.

no, it is truly truly gross tasting
you can dissolve it in a tiny bit of water then top up with neat squash to disguise the taste slightly
(in case you need to know for future - hope not though)

Hello,

Sorry to hear about your pneumonia. I'm quite similar - just come out after pneumonia myself!

I've been on prednisolone, varying dose 7-60mg for the last 6 years, for asthma. I also have an immunodeficiency, which means I'm much more likely to pick up chest infections, and as a result I've developed bronchiectasis, which again makes chest infections much more likely.

Try not to panic too much about all the side-effects, but do take all necessary steps to protect yourself. Have you been given bone-protecting medication, like calcichew or risedronate? If so, ask your GP as the sooner started the better. You'll also need regular DEXA scans to check your bone density if you are going to be on them long-term. To protect your bones, follow the dietary advice given to menopausal women, and try to do weight-bearing exercise when your asthma permits it.

I don't really know that there is anything you can do to prevent the development of diabetes. I certainly haven't developed it yet, but it a real risk with long-term steroids. Trying to keep your weight down, despite the steroids, will certainly help. They do increase your appetite, so keep an eye on that and if you find you have to, cut back a little to keep your weight within sensible limits.

REally good luck - hope you pick up soon.
xx

Hello IF, I had to take this on a short term basis and like you was worried about the side effects. But did ok really. I did get a few instances of the most astonishing, ravenous hunger that could only be satisfied by stuffing my face with not one but two fried egg sandwiches (made with butter, white floury baps and large eggs ... mmmmm). So I did worry about putting on weight but didn't seem to gain too much. I think my hands might have felt a bit tingly / numb from time to time, is that one of the s/effects? But it didn't bother me too much and no long term effects. And it helped to clear up the condition pronto (ulcerative colitis) so it was worth it.

hth

I have been on and off steroids since I was 23 (am 41 now) as I have Crohn's disease.

All of my side effects have been physical huge puffy cheeks
hair loss (when taken in conjunction with an immunosuppressant, not so bad when on own)
weight gain
skin thinning (can see little thread veins on part of my face if you look closely)

Also I became osteopoenic after having dd - I was on pred 25 to 15 mg for 18 months as my Crohn's flared up. However when I got off them I took plenty of calcium and weight bearing exercise and my bone density is ok again.

I didn't really get the emotional side effects that some people do. My mood didn't get better or worse really

I have also been on it 20 plus years and have just started a bone boosting vitamin cocktail and have skin which marks easily but apart from the weight issues I have tolerated it reasonably and without it I have no life!So don't have a huge choice

weight gain and cheeks worst things imo

Thanks everyone. oxcat I sound like I have a similar condition to you, I have also developed bronchiectasis.

I don't know whether or not it's the steroids are still being quite ill from the infection but I'm feeling so weirdly spaced out and very emotional. I'm exhausted and have some really nasty stomach cramps and a kind of windy feeling in my tummy.

One of the things I've wondered about, that I've read, is that taking prednisolone reduces your immune system so you're more likely to pick up bugs / viruses / infections. Has anybody experienced this?

I'm not concerned about weight gain as I'm underweight at the moment, my biggest worries are for stomach upsets and resistance to other bugs, I can't face getting everything dd brings home.

I have never had a stomach upset even when on a zillion mg IV in hospital (but I put on 4 stone in 3 weeks without eating through water retention! Was 6.5 stone when I went in and 11 when I came out)

my stomach is a bit iffy but there is something you can take to counteract it and it has taken me 25 yrs to need them and even then only half dose xx

Blimey countess. I'd quite like to gain around 2 stone but preferably not all fluid

noddy, what kind of dose are you on as a general dose? And you countess?

And what about the reduced immune system problems?

Well for me that is a bonus as I have an auto immune disease

Not really had a prob though