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?

bollocky boolocks - DS has a D&V and temp (actually no D but pletny of V) and GP rang me in work to tell me to get my arse down the lcoal hostial first thing in the morning to get my CO antibodies checked. Apparently not worth faffing around if CP is doing the round.

have started to get eating sussed a littel - going for very large quantities or slightly healhtier thigns (rather than inhaling packets of crisps and bscuits as I;ve been doing)

Huge bowl ofporridge for breakfast and two ham sadnwicehs with a low fat soup for lunch. Seems to work and although I have probably been taking in double my normal calorie intake I think I can cut it back by going for volume over calories.

ALso been surprised that I haven;t put on much weight (yet....!)

Kew - what would happen to you if you got the D&V? How does taking the steroids affect things like that? I hope your ds feels better soon. Keep washing your hands constantly before they go anywhere near your mouth! D&V spreads through contact with the D or V itself rather than the person with it. You probably know that.

I've got my chest clinic appointment at last for Wednesday so I may / may not have news.

oh I don;t think D&V is any bigger a problme than ususal! Just an added little touch to add to the mix. Doctor said that despite reduced immunity not all things are compromised eg no increased risks of cold for example.

That's interesting, I've been wondering about that, the increased risk of catching things while on steroids. I seem to catch a lot of bugs at the best of times.

first lower dose of 60mg today until next tues - will be interested to see if I get any withdrawal signs.

Interestingly some of my side effects which I didn;t think were the steriods actual;ly are - the peeing for england is a side effect just not as common!

On the upside am manically busy in work and steriod mania/insomnia is working out quite well for me! Don;t want to know what my BP is doing though...

is your appt today or next weds?

It was today. The consultant thinks I'll have to be on steroids forever at a lower maintenance dose then up them whenever I feel an 'attack' coming on. I'm fairly pissed off about it but if I don't keep taking them then I'll end up with permanent irreversible lung damage. He's also prescribed me some anti-fungal antibiotics which I can't read the name of on the prescription, looks like Vordanejslem which doesn't seem likely. I'll be googling tonight. I hope you get on well with the reduced dose kew.

suffering really bad hand shakes and muscle weakness in my arms today - have a feeling it withdrawl going down from 70-60 yesterday. Hopefully will wear off a but afetr a few days as its a bit unnerving.

It could be withdrawal, but are you sure it's not a relapse of your medical condition? Have you checked it out as a side effect of the medication? I had terrible shaky hands when I was on my highest dose 60mg. I don't remember muscle weakness but I did feel terribly lacking in energy and out of synch with everything. I never had the 'wired' euphoric type of energy people talk about, I just wanted to sleep and felt drained, like a vampire had removed most of my blood. I haven't had any 'withdrawal' symptoms while reducing my dose.

no theactual condition has no symptoms (except for slightly concerning one of possibly dropping dead ) - I checked out withdrawal symptoms and muscle pain/weakness is one. Mind you it the one I have most struggled with on anyway so seems ironic that it has got owrse on a lower dose!

Hoping it will settle down as my forearms are relaly quite weak and uncomfortable. The only otehr thing whcih botehrs me a bit is I am getting undly anxious and irritable form time to time. Other symptoms I don't liek but tbh they aren't that hard to cope with - eating too much (plenty of practice); a bit manic working quite well as loads to do in work atm; insomnia not great but it doesn;t seem to be resulting in unmanageable tiredness that it would not on steriods if I were getting 5/6 hrs a night.

I have dropped 10mg overnight whichseems a lot and may be why I'm getting a bit of rebound.

fyi- "Some people also develop muscle and/or joint aching (called steroid withdrawal symptoms) when prednisone is tapered too rapidly or discontinued."

actually I did get muscle / joint aches when I reduced my dose. I just didn't seem to get weakness. And I wasn't sure if the muscle / joint ache was to do with the prednisolone or my infection as I do tend to feel achy at the best of times. I haven't had any increased appetite, the opposite in fact, I've been feeling quite nauseous and probably lost weight.

Oh to be bouncing fit and healthy!

I hope you're ok and feeling better madhair?

good news is that I am immune to chicken pox.

Bad news is doctor I saw this week is barking mad...

Good re. the chickenpox.

Barking mad in what way? Are you able to reduce your dose again this week?

OK this is how it went...

Been on 70 for 3 weeks, one week on 60.

Saw differnt registrar whom I haven;t seen before.

Platelet count was 77 on discharge, 130 after another 2 weeks on 70 mg, then this week afetr one week 70 one week 60 count dropped to 65.

Registrar says "OK take 60 for another week then 50 for two more weeks then come back afetr 3 weeks."

Me: "Ummmmm... don;t you think 3 weeks on further reduced dose is quite a long time when my count has halved in two week on a dose of 60 for only one week?" (In a slightly panicky voice)

Reg: "yeah OK come backin two weeks then".

Earlier he said to me...

Reg "Oh and has anyone checked your Vit B12 levels?"

Me "No why?"

REg "because lack of B12 cn cause slightly lower platelet counts"

ME "They weren't SLIGHTLY LOWER YOU LOON, they were GONE"

He obviously hadn't even read my notes.

Have to decide whether to speak to my GP as I'm nervous about coming down the dose again without them checking the levels first.

That sounds like horrible incompetence Kew. I don't blame you for being pissed off. It's your body FFS! Doctors can be very insensitive in their vagueness I find. If I were you I'd stick to the 60 dose for a while longer and see if your count drops lower. If it stabilises / improves then maybe drop the steroids a bit lower? Maybe 5mg at a time rather than 10?

My recent x (not ds' father) was on around +/- 20mg prednisolone daily due to colitis.
Side effects were shocking...the most apparent...horrific aggression. (When a martial arts expert starts using his 1 inch punch on you, it's time to draw the line.)

I say NO NO NO Prednisolone!!!!

SAdly MsMoggy "NO NO NO prednisolone" in my case means NO NO NO platelets = eventual death. Which better avoided I feel! Side effects of of pred are annoying but slightly less permanent than death

Kew, you have to take it. No alternative. How are you doing with the side effects by the way? Better or worse in any way? Are you bruising easily?

I have to take it too, even if only sporadically as if I don't I'll get fibrosis on my lungs which is irreversible and will change my entire future as well as shortening my life.

But I try not to think about that.

side effects have calmed down or maybe I have just got used to them. Have started bruising again last couple of says soamgoing to ring tomorrow and see if I can get a blood test.

Ironically ended up in casualty saturday night with DS being administered steroids - same casualty as me the month before

Lovely Sat night 11pm - 4am in casualty. Poor mite has croup - horrible. Much better now though.

Oh I remember dd having croup when she was around 8 months old, it was the first time she'd ever been ill and it was horrible. She frequently has doses of soluble prednosolone these days as she has quite severe asthma. But she usually only has to take them for 5 days at a time.

I hope your bruising dies down BTW

can I ask if you feel colder than normal? ds is on his second week of taking pred but seems to be freezing all the time!

no I am far hotter than normal...

Brusiing isn;t bad but clinic have agreed to see me tomorrow which is good news. Suspect it is nothing but happier to see them before taking my steriods down again.