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?

When I was on steroids during pg (to avoid miscarriage) I tapered off very, very slowly - from 25mg daily it took two weeks, after just three months.

dh has just had the short, sharp pred treatment for post-viral asthma (first time ever) and went from 40mg x 4 days, 30mg x 2 days, to 20mg x 2 days to zero tomorrow....he felt awful today (anxious, tired, achey) and is worrying about tomorrow. Any advice/experience, please, o wise ones?

I think the issue re slow weaning off pred is only significant if you've been on it for any length of time, in which case it will have mucked about with your endocrine (oh Lord have I spelled that right -- it's yer hormones, basically*) system. Am I right to think he's only been on 40mg for 4 days? In which case, I'd guess it's not a worry; perhaps he's feeling crap because of the asthma.

• this may startle you, but I have no medical training

yes less than a week certianly you can straight off them but high doses are generally tapered afetr 2-3 weeks on them.

Update chez Kewcumber:

Mother still alive - cancer scan clear for another 6 months. They told her today that she is the sucess story of the Royal Marsden! (sorry I know hats a different story but somehow it felt relevant - was a bit of a stressful day all round today!)

Cat still alive - went to visit this evening and cat was so pleased to see me, purred and after a bit did a poo. Charming. The vet clapped, apparently a good sign. However temperature is still up so no positive prognosis. Cat horrified when I let DS come in for a few minutes (having put cat safely behind locked bars) And now I've had to pretend to be a sick cat the rest of the evening for DS to mend me.

I'm still alive - left for hosital appointment at 10.30am and got back at 4.30pm . Good and bad. Platelet count is near bottom end of normal around 130 which is good, blood pressure is up to 160/100 = bad and they think result of the steriods. Not going to reduce steriods yet so an another week of this 70mg dose (boo) then come down to 60 for a week then they test again. Apparently I will be very slowly taken down over 2-3 months. If treated agressively now apparently 60% of people go into remission and never need treatment again but if they try to take you off them too fast then much higher rate of relapse needng chronic steriod useover years. So have been told to stop moaning like a big Jessie about the steriods and take it like a man. Or thats what they meant!

Side effects are really annoying me but I guess on balance having platelets is better.

So a good day all in all I think.

You're all hanging in then kew - I didn't know about the sick cat and the sick mother. You're going through it aren't you? How was work by the way?

I think you're making the right decision re. the prednisolone, it's not worth risking your long-term health. I'm planning on a frank chat with my GP tomorrow about my long-term prognosis. I suspect I will be much like you, madhair, on and off steroids throughout the years.

yes its been a tough couple of weeks. They have brought the omeprazole down to 20mg too but to stay on then as long as on the steriods (at least until much lower doses) if that gives you ammo for your GP.

Work was just about managebale though I found by about 3.30 I was getting a bit manic - I seem to have very stressed/manic episodes about 2/3 times a day which aren;t great in work. Will have to find a way to chill out I think.

Thanks, myeye and kewclotter...think dh also feeling rough from stopping the 3x daily codeine syrup, which he's also been on to stop the cough that was further inflaming bronchs...

Wow, Kewclotter, you certainly have been going through it - sorry, only just caught up with your earlier posts. I'm glad all of you are doing ok atm, long may it continue (and I can sympathize with spending hours pretending to be a cat, sick or otherwise, one of dd2's favourites ).

steroid withdrawal affects the adrenals.I have steroid induced addisons so will need to take a dose for life.It does raise your BP which is why withdrawing too quick causes light headedness and aches.My legs get really weak and on low doese my periods are awful too.Withdrawing too quick is related to how long you have been on them.

noddy I'm such a whinge bag - I'm just being grumpy becasue the thing that made her sick is symptomless - its the drugs which are such a shock to my system.
I find the periods of hyperactivity/shakiness really difficult and am having wuite bad muscle weakness in one arm (the infected one so perhaps that might improve a bit) and legs. Its very disconcerting.

As for periods - well I'll just say that nothing can possibly be worse than having a period with no platelets. Honestly. Don't ask.

noddy - I also found some research on the taking larger doses more intermittantly in the US. But as you say mostly n children high doses twice a week instead of small doses everyday redices side effects apparently, but think it still research atm.

Well, I saw my GP this morning and she was very keen for me not to be on long-term steroids (she's given me some Lanzoprazole for the stomach) and seemed convinced that there were possible alternatives for my condition. But she wouldn't take me off them altogether until I've been assessed in the respiratory clinic so I'm stuck in Weird World for a bit longer.

kew, in your case, even though you're having a very large dose and you're suffering with it, I do think that it's worth continuing them, especially if it saves you long-term grief. My illness isn't as acute or as dangerous as yours, it's also chronic so it's not going to go away whether I take steroids now or I don't. I just wanted to say that because otherwise I feel like I'm coming across as irresponsible. You've had a big health scare whereas I've had an exacerbation of something long-standing.

Health is so odd isn't it? I was probably feeling way more ill than you when I went into hospital but I have something not at all life-threatening. It's mad that you could be so scarily ill and feel totally well. Did you never have anything like this before in your life? You must also be feeling quite shell-shocked by the whole experience. Hospitals are quite alien and frightening I find. You have to give your body over to people who sometimes seem to know little about what they're doing.

IF it was scary at least until the bone marrow tests when ITP became the only real diagnosis left and when I started responding to the steriods obviously everyone relaxed. Its hard to take something seriously when you feel fine - I think thats why a doctor or nurse cam around to see me every hour or so to check I wasn't bleeding (which of course I was in some way or other - never had so many nose bleeds in my life!)

Intellectually I do accept that trying high dose steriods for a fwe months with the chance of a complete cure is much the better option than ending up with a chronic condition. I plan to moan like a drain for 3 motnhs to make myself feel better and let everyone around me share my pain!

Luckily I got moved to a specialist haematology inpaient ard after a couple of days (ie when they could see that the IvIg wasn;t working) and I have to say they really knew their stuff.

Hi IF, I'm also on Lanzoprazole, because I get v bad heartburn/reflux with the bronchiectasis. I'm glad you don't have to be on long term pred, but horrible for you while you're coming off/waiting for doctors to tell you what to do. When is your next clinic appt? Hope they can help.
I have full blow exacerbation here, feel shit, the usual fluey symptoms and coughing more up etc, have to do lots more physio as well as up the meds. sigh, it's ds birthday today too so that has been tough. Still, last yr on his birthday I was in hosp so can't complain really.
Hope you're ok, you too Kew.

Grumble away kew, it's totally justified and you're in good grumbly company

madhair, I'm so sorry to hear that . It's dd's birthday next week and I'm really hoping I'm in good shape for it. How long do you find your exacerbations last? I can't tell you what a huge relief it is to discuss this condition with someone who knows what I'm talking about. I still haven't checked out the bronchiectasis website, I might do that now. I hope you feel better soon, how much pred are you on right now then? I find the chest physio is really helpful although I get really distressed at the colour of some of the stuff I cough up especially when it's pink / blood streaked. Do you get that? When were you first diagnosed with aspergillosis / bronchiectasis? I didn't know it could cause reflux I thought that was just the effects of the steroids. Does it cause other stomach disturbances do you know? I seem to get such a lot of tummy upsets these days.

do any of you know anything about CP and steriods? www.mumsnet.com/Talk/138/618654?rnd=1222894606947

I don't unfortunately, I'm reasonably new to the buggers.

madhair, I can't for the life of me work out how to post on that forum. I've been staring at it for over an hour now like an idiot.

Hi IF, yes saw you on their. My username is dizzy there. You just click on a topic you want to post on, a good start is the my story one, and should be able to post on that? I must say it's not as easy as mumsnet, but when you're used to it it's fine, I love it now because it's helped me through so much, with people who really do 'get it'.
Yes sometimes have bloody sputum, it's nothing to worry about though, it can be just blood vessels bursting from the effort involved in all the coughing/physio, it's always good to mention it to your gp tho as they like to look into it anyway.
A lot of us seem to have reflux/heartburn probs, I get really severe pain with it (they did check out my heart as the pain was so crushing). Don't know why but it seems to go together.
I was only dx about 3 years ago but was told I had had it since i got pneumonia as a baby, have always had chest probs with countless pneumonia/bronchitis/pleurisy etc. It was a real relief to get a dx at last and know why this was happening. Unfortunately it has degenerated, especially since i contracted pseudomonas, and my lung capacity (FVC1) has now gone to around 50%, but I count myself lucky, some of the guys only have around 20% lung capacity
How's the coming off going? Hope you're ok today.
Kew will just look on that thread, but only really know about pred in relation to my condition I think.

there
I do know my theres, theirs and they'res, honest gov. Blame the meds....

madhair, I hope you don't mind me asking but I peeked at your profile and it said you were 'disabled' - is that from this condition or something separate? And what's pseudomonas?

I'm not doing too badly today really. I managed to do some work but I feel very washed out and tired now.

Hi IF, no don't mind at all. Yes it is from the bronch, it is v widespread and my consultant pushed me to go on DLA. I've been unable to work for a while now (was a teacher.) I became so ill it was impossible to do that job, so I tried to return as a classroom assistant but was unable to do that either, in fact very quickly ended up in hospital. My doctor has now signed me off permanently, which is v depressing but I have had to accept it as my illness has been getting worse. I therefore applied for DLA and was awarded it, along with blue badge etc as it affects my daily life significantly - some days I am better than others and try to get on with things best I can. I don't like to think of me as disabled but in some ways it has helped to come to terms with it all. Many of my friends on the bronch. site also get DLA etc and are registered disabled, it's a very varying condition and some only have a localised patch which doesn't affect them a lot, but some like me have it in all lobes across both lungs and get v frequent infections etc (I get infections usually more than once a month).
Pseudomonas is a particularly nasty bug which affects CF and bronchi sufferers, it is usually oral antibiotic resistant and means you need IVs and then a long and difficult eradication programme involving nebulising colomycin and taking more oral abs. It damages the lungs significantly, since I contracted it it took my FEV1 from 70% to 50% so has made a huge difference to the quality of my life. I find now that I can only do one thing in a day - if I go shopping, I have to lie down for much of the day after, and even the school run which is only 5mins is a big struggle. I go to the gym because my consult has encouraged me to get as much gentle exercise as I can, so I do some gentle swimming, weights etc, but if I do that one day I am exhausted the next and can't do anything.
Goodness this is sounding terribly whingy and self pitying, sorry!! I count myself lucky to still be able to get around and play with my kids etc to the extent I do.
I'm glad you are OK, hope today is even better. take care.

Gosh madhair, you're a lot further down the line with the condition than I am. Did you ever have a time when you didn't have it? And do you know why it started? I've always had quite severe asthma, since childhood where I was quite crippled by it physically, and I tended to get chest infections with a cold but 2 years ago I got the first worst pneumonia which wouldn't shift. I have a suspicion that it was triggered by me inhaling large quantities of aspergillus spores as I cleared out a highly mouldy shed without even thinking of wearing a face mask. I was only diagnosed with aspergillosis a year ago and the CT also showed bronchiectasis but I don't know to what extent. Now I'm slightly more clued up when I eventually get back to the chest clinic I will ask all these things.

It's good to talk to you.

kew - how are you?!

It started when I got severe pneumonia and whooping cough as a child, apparently this can scar your lungs and cause the disease. I was quite a sickly child but they put it down to asthma etc, only discovered this more recently as can only be seen on CT scan.
The pneumonia you had sounded awful, and sounds like the mould could have caused the aspergillosis. I don't have that severely at all, it's the bronch that's the problem with me. Still have asthma too but controllable. Gets worse with infections.
Glad you are more clued up now, when's your next clinic appt? Mines next week, and dreading it because we've recently moved so had to move consultant and hate going through the whole rigmarole again (plus loved my previous consultant who was absolutely lovely). So hoping this one is a goodun, they do vary!
Have oyu managed to have a go on brus yet? You're v welcome to join us.

I had extremely bad asthma as a child, I remember getting these horrible jabs in my arm and spending most of the summer lying on the sofa unable to go out to play.

I think possibly the aspergillosis led to the bronchi but I don't know for sure, I may have had the bronchi around for years.

I'll try the website again. I couldn't find 'my story'.