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Original poster

Is anyone familiar with taking prednisolone or other steroids on a regular basis?

171 replies

imaginaryfriend · 24/09/2008 13:22

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?

OP posts:
Original poster
imaginaryfriend · 20/10/2008 15:10

whoops I'm hotter on steroids too.

Well, I should say I feel hotter. I haven't become sexy or anything.

OP posts:
whoops · 20/10/2008 16:17

lol imaginary!
ds has been complaining about a sore neck for 2 days too so am taking him back to the gp this afternoon as am being panicky about the steroids masking something I'm sure I'll relax after he has been on them a while

Original poster
imaginaryfriend · 20/10/2008 16:27

What's he taking the steroids for whoops?

OP posts:
whoops · 20/10/2008 16:42

he is taking them for a kidney problem which was only diagnosed a couple of weeks ago.

Original poster
imaginaryfriend · 20/10/2008 16:59

How large is his dose?

When dd's had to take them she's usually bee on 25 mg for 5 days and I've never really noticed any side effects. But I probably would if she'd had to be on them for longer.

OP posts:
whoops · 21/10/2008 11:27

he is on 35mg for 4 weeks supposidly but we don't see the consultant again til the 19th Nov

Original poster
imaginaryfriend · 21/10/2008 11:37

That's quite a high dose for a child. How old is he whoops? Dd's just turned 6 but had steroids mostly between age 3-5. She hasn't needed any for over a year thank goodness. I'm guessing the consultant told you you mustn't just stop them? You have to taper the dose down very slowly or your body can go into shock and it can be quite dangerous.

OP posts:
whoops · 21/10/2008 11:39

ds is 7.
We were told not to just stop the dose! I will phone the consultant later this week if I haven't heard anything from them as I know he was on holiday for 2 weeks and probably only just got back.

Kewcumber · 21/10/2008 15:11

good news here - saw a proper doctor this week He thinks my earlier count of 130 was probably bollocks (my description not his) and platelets now at 105 so ignoring the 130 count they would have gone 0 10 44 77 65 105. which makes more sense.

So he's happy for me to reduce again to 50 this week then bloods again next week with a view to going down again to 40 next week.

Gosh 35 does seem high for a child!

Original poster
imaginaryfriend · 21/10/2008 19:12

Hurray for you kew!

OP posts:
Original poster
imaginaryfriend · 21/10/2008 19:13

Thinking about it though I think children's dissolvable prednisolone is a lower strength than the adult ones.

OP posts:
Original poster
imaginaryfriend · 27/10/2008 11:22

How are you doing kew?

OP posts:
Kewcumber · 28/10/2008 12:03

hello - not too bad. Had an appt this morning platelets still at 104 on lower dose of 50 for a week so they've decided to try to be more agressive getting me off the steriods so I come down to 40 for a week then 30 for a week then checked again in two weeks.

Have found coming down to 50 from 60 much harder than 70-60 I guess its proportionately a bigger drop. Really bad muscle weakness in one arm and both legs verging on being painful (like having tight elastic bands around my arm, legs not so bad). And the shakes quite badly (though not visibly so [probably ot as bad as I think!) and very tired.

On the upside because I'm tired I have started getting 6-7 hrs sleep for the past couple of nights rather than the 5 I had been getting for weeks.

Hopefully it will all settle down but I suspect the next few weeks might be tough with 10 mg drops every week.

They ahve to weight up treating the ITP agressively with the effects of leaving me on the steriods longer - apparnetly they normally drop every two weeks rather than every week.

Original poster
imaginaryfriend · 28/10/2008 21:58

That's good re. the platelets. Crap re. the withdrawals.

Will the ITP come back again? Do they know what causes it in the first place? I've never heard of it before.

OP posts:
Kewcumber · 28/10/2008 23:46

well offically it hasn' t gone yet! Stillhave lower than normal platelets even on highish dose steriods - what they want to know ifwhen eventually they take me off them, will my platelets count stay satisfactory - today they said anything above 30 will do to come off steriods long term ao at 105 at the moment I can afford to drop quite a lot before it becomes a problem.

Well they know I amproducing antibodies to my platelets and killing them - the streiods are being used as an immunosuppressant not as an anti-inflammatory.

No they have no idea what caused it - possibly induced by adrug I started taking recently as there was one case in 10,000 on the drug trial who developed a low platelet count (but not NIL) and not clearly related to the drug. Other than that they will probably never know - just a condition that some people develop.

Original poster
imaginaryfriend · 02/11/2008 20:43

Just checking in on you kew

OP posts:
Original poster
imaginaryfriend · 06/11/2008 14:13

Kew?

OP posts:
funnyperson · 09/04/2012 05:57

Just wondering how kewcumber got on with her itp and steroid taper.
I am still trying to get off my steroids having just been in hospital for severe asthma. I am on long term steroids for my ulcerative colitis but I really really really want to get off them as I have the moon face, buffalo hump, buddha belly, hair etc and when my dose goes down I get sleepy weepy and achy.
Any one else trying to taper?

noddyholder · 09/04/2012 12:50

What does are you on? How long have you been on it?I am not a doc but have been on tehm for about 30 years and have done several on and off eps so know a fair bit about them

funnyperson · 10/04/2012 20:21

hello noddyholder I am on a tailing dose at the moment and have now got down to 10mg. I want to get off them completely but have been on them for a decade.

Jean1190 · 13/05/2025 20:22

AnnieAreYouOkAreYouOkAnnie · 24/09/2008 15:34

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.

Which magic drug is this please?

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