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?

You don't tend to pick up external bugs more frequently then? And do you have problems if you miss doses?

Reading this thread with interest - DH has just got out of hospital with what will be a long term condition. He has been on prednisolone for 2 weeks (IV then 60 mg) and now is adding an immunosuppresant. He also has to take alongside it something to protect his stomach and daily calcium tablets along with a weekly bone protector.

DH has always been on the lowest point of healthy weight and has now lost another stone so it will be quite interesting to see what it does to his weight.

We were warned that it could effect your liklihood of picking up colds but the doctor did say its not a major risk.

Well I take immunosuppressants too so I wouldn't know really as that lowers my immune system

Though I have had one cold in the last year

To be honest there is not a lot you can do about it. You have to take them. All you can do is to make sure you eat well, take calcium supplements and maybe echinacia (check with your doc, it is an autoimmune I don't know if you should be boosting your immune system but I really don't know, I am not medical, but I am not allowed to for eg)
Also make sure you take weight-bearing exercise (walking, running) regulary. Have regular bone density scans too.

It is possible wiht some conditions (and I stress I have no idea whether yours is one) to take the steriods every other day which lessens the side effects.

an autoimmune response that should say

I am on 15mg alternate days.It had been found that in children taking them every other day hugely reduces side effects but wasn't as apparent in adults but I tried it and it seems to work for me No puffiness or fluid but does make me hungry and I really need to watch it.

Hi imaginary friend. I also have severe bronchiectasis and some aspergillosis. I have been on and off pred for the last 15 years or so, sometimes on it for up to six months. I have had most of the side effects described here - mainly weight gain and jitters, I actually get blackouts on it which mean I am unable to drive on it (a complete pain.) I also feel v hormonal and emotional.
To cope with the long term probs i take calcium supplements and try to keep active. I haven't had any investigations into bone density etc but have been told I will need to in the future if I carry on my pred consumption at this rate! I do get a heck of a lot of infections, but my consultant puts these down to the severe bronch. more than the steroid usage, tho I'm sure they descrese immunity etc, dh makes me drink actimel but not sure how much it helps!
Have you recently been dx'd with these diseases? It can be so isolating can't it? I am on a great bronch website if you want to come and join us and talk to others with the condition. It's so rare, I've not come across anyone on mumsnet yet before with it, but do also chat on disabled parents with some others with lung diseases.
all the best.

don't take the calcium supplements at the same time as the steroids btw (with magnesium , I think it is, is better for absorbtion as well)

if it's autoimmune, you can look at immunomodulators as supplements rather than immune boosters. I honestly can't remember what ds was given y the naturopath though - do remember he had flaxseed oil though

ds1 does have reduced immunity when on steroids. we give him the flu jab once a year and he' had pneumovax but that might just be relevant to kids?

madhairday, your situation sounds very like mine healthwise although I was only first diagnosed with aspergillosis earlier this year so I've only previously taken very short sharp doses of prednisolone following asthma attacks.

I'd be really interested to have a link to the bronchio site you mentioned. I found an aspergillus one but it was quite under-used, probably because it's such a rare condition.

Wow how many of us have just had pneumonia?
I've just had it also and was three doses of different ABs and on these steroids for 5 days to calm my chest inflammation down - I thought they were great, as I was really struggling to breathe. My face was puffy though, but my excema cleared up beautifully worse again now, and face still a bit puffy. Had huge munchies on them also.

I now have a steroid inhaler beclazone and a bronchi dilator also. I'll be off for tests soon to see if I have asthma and if I have, how bad - I'm coming off the max high puffer dose now and am a bit wheezy.

Take it easy everyone.

Can I ask if anyone else has had side effect on high doses (70mg daily) of peeing for England? I can't help thinking it may be linked due to the whole water-retention thing (which I am doing around my middle not my face atm) of course it could just be that with so many tablets to take I am drinking a lot more.

I've been on a steroid inhaler for a while now, I use Symbicort 200, I wish that was enough to control the problem without having to resort to taking steroids in tablet form as well.

I just feel so strange and spaced out and I don't know if it's the prednisolone or the aftereffects of being so ill. I feel like I'm surrounded by cushions and I can't think properly. Sometimes I want to cry, sometimes I feel a weird euphoria over nothing. I don't like it.

No, if anything I seem to be peeing less.

I just feel so strange and spaced out - I think thats the prednisilone. I feel the same. A bit like my eyes are working at a differnt speed to my feet.

Kewclotter I often feel spaced out on pred, that's a good description of different speeds for eyes and feet!
IF, the url for the bronchiectasis site is
www.bronchiectasis.info/
Come and say hi, it's a good site.

Yes eyes and feet, and like being wrapped all over in cotton wool while also being on the verge of total panic. If that makes any contradictory kind of sense.

I'll check out the weblink, thanks.

I've got to go to work on Monday and pretend to be a finance director whislt still n 70mg a day (please god let them start bringing it down on Tuesday). Any tips fr how to appear normal to the outside world

dh is on 40mg daily atm, due to post viral asthma/inflamed bronchs/no-one-quite-knows-what-to-call-it. He's reducing to 30mg today, which I have to admit I'm looking forward to and anxious about at the same time. Its very helpful to read others' experiences on this thread, and to know there's a bronch site out there in case.

I was on 25mg of prednisolone for the first 3 months of both my pgs....not very, very long term, but long enough for sides to kick in (and I did wear a medi-alert pendant) and I can honestly say I did get used to them. Some of the effects got less (feeling wired and spaced out, difficulty sleeping) and some of them got more (gaining weight, rounder face - though being pg not sure how much was that).

I'm sorry to haer about the pneumonia, IF, my BF had it last winter and was exhausted for quite a while...hope you can take it easy, and have help?

Kewclotter: breathe, speak more quietly than you think you need to, and count to ten before shouting at anyone

You'll be fine, they'll just think you're ultra dynamic and clever!

My husband has ulcerative colitis and he's been on cortisone for several years now. We haven't seen any side effects really.

Suspicious of cortisone, at first he was only using the medicine for colitis itself but it was not helping him stay healthy all the time. And once inflamed, he would have to start cortisone at high doses like 60-70mg a day, stay on it for weeks and then gradually decrease before quitting totally. But he had to do this so often, several times a year. Getting blown up, pimpled and moody in the mean time.

One day when he was fine and showing no symptoms of inflammation he decided to start taking cortisone (prednisolon) 5 mg a day, everyday, in addition to his colitis main drug. That kept him healthy for over 5 years. Much better than using it on high doses occasionally and then getting off it completeletely.

The accepted wisdom, of course, is that you shouldn't be on it for lo ng periods of time, certainly not indefinetely! However, we researched a lot, and arrived at the conclusion that what the actual illness (especially during flared-up stages)and the sporadic use of cortisone are putting his body through is more detrimental for his body than the supposed side effects of cortisone.

After being healthy for 5 years with 5mg a day, his sickness got so bad in December 2007 that even 60 mg a day for weeks wasn't enough to keep him healthy (ulcerative colitis is a stress dependent sickness, he was dealing with his PhD plus we were expecting a baby), he decided to go off cortisone and try this new depot intravascular ulcerative colitis medicine. That went badly, tried it for 4 months, the colon was totally inflamed at the end; now he's back to cortisone and recovering.

I didn't have the time to read everyone else's comments but hope you find a good, balanced way of helping yourself. Sometimes you just have to be your own doctor, don't mind the listed side effects of drugs in general would be my advice. Try it for a while and see it for yourself. I don't belive (except some chemotherapy drugs) any medicine is that dangerous for the body. Almost everything can be given a shot.

I took prednisolone for 18 months when I had sarcoidosis. I can't remember the dosage I took though but I was constantly begging the consultant to wean me off the drug because I wanted to try for another baby.

To be honest I don't remember any side effects at all. I didn't put on weight but this was 8-9 years ago now and I can't really remember if I felt any differently.

I have 'Coping with Prednisone by Eugenia Zuerman and Julie R. Ingelfinger M.D. I think it's the 1998 edition. If you would like I could post it to you. Send me an email at
siank at securexpance dot com if you want it.

My BIL was on steroids (?dose) for years for crohns, now has awful curvature of spine and osetoporosis.

Thanks for all the replies. I halved my dose today (as advised by the consultants) and I have felt more like 'myself' but I've also been getting pains in my legs and arms and feeling vaguely 'infected' so I hope it's not too soon.

kewclotter, what are you taking them for? Is this the first time? I'm signed off work next week so I don't have to try to pretend to be normal just yet.

it is important to reduce slowly i alwats get an achey fluey feeling reducing them

how quickly can you reduce it? I'mhoping if my bloods are good Tuesday they'll start then as:
a) they won;t know if my platelets go back to normal without steriods unless they reduce/remove the steriods;
b) I can't stand the fecking insomnia and peculiar taste and shaly hands anymore. [grumpy ungrateful emoticon]