I’m at end stage emphysema have just come off a dose of prednisone. Felt halfway human and motivated to do small jobs around the house. It felt so good just to make us both a cup of tea
What is the reason why GPS are against giving a small does daily just to be able to have some quality of life. Thankyou for any answers. Sam. 76
There can be many issues with long term prednisone which is why doctors are not keen to prescribe them. Even short term prescriptions can cause issues if someone takes them on a regular basis. They can cause issues with pancreas, weight gain, mood changes and so on. Plus they can cause other conditions such as Cushing syndrome.
They are nicknamed “devils tick tacks” because of the potential to do harm. Obviously if someone is struggling to breathe with a flare up, it is deemed necessary for them to be taken. But even then doctors will try to prescribe them for as short a time as possible. If someone takes them for longer than 2 weeks then they have to taper them to complete a course because of risk of adrenal insufficiency.
Thankyou for the information seems I probably won’t get them yes they tapered me down took about 2 weeks+ I know they just mask a problem I’m feeling the effects of not being n them breathing is laboured and I’m constantly tired I have to watch out for C02 too. Thankyou for your reply it was helpful. Sam
I have been on pred daily for years. Up to 9 MG per day, breathing outweighs the side-effects. If I can't breathe what do the side effects matter? Breathing is everything
I have maintenance antibiotics 3 times a wk
Iv had steroids loads of times over the yrs and now have severe osteoporosis recent severe wedge fracture which has lead to kyphosis
I’m in agony with my back most days along with really struggling to breath everyday
I can now only walk a few feet and I’m gasping for breath
But have to be honest if I had the choice steroids or carry on not being able to breath I would say what the heck
If I can breath I would be able to go out again because at the moment I’m a prisoner in my own home
I’m affected by humidity and now the pollen is here again
I can’t even go for a drive out in the car anymore
So yes for me putting the osteoporosis to one side which steroids were partially to blame I would say give me the steroids
Hi Sam Jeff, I'm 63 with severe emphysema and take prednisone with my antibiotics in my rescue pack ( 5 day course 40mg daily ) and I'm a different person I can do things alot easier but I'm well aware of side effects I've asked to be put on a low daily dosage 2.5mg and I'm finding this keeps me mobile and I feel I'm living life again , sending hugs 🥰
Hi there,
Would you mind my asking you how long you have been suffering from emphysema and when you was first diagnosed. Also, how many years did it take for it to be now be severe. Thank you. Christine.
Hi , Had breathlessness few yrs before I went to doctors for help he sent me hospital for spirometry tests which showed I was suffering copd/ emphysema had this now for 9yrs , 4yrs ago had lung reduction 5 valves inserted in right lung but unfortunately it didn't work for me but works for some , but I'm now on long term 2.5mg predislone and it helps me do little things I couldn't do before still starting and stopping rather be doing things than sitting all day doing nothing which doesn't help , bought a air bow gadget you blow into this daily and it helps exercising the lungs which helps even blowing into a straw does the same thing ,we are all at different stages with this horrible disease and yes still have bad days but make the most of the good ones 🥰🥰
Thank you for your reply. I found a great channel with two doctors on youtube talking about a gadget that helps exercise the lungs, not sure if the same as what you describe, i shall check it out again.
Wishing you all the very best x
Hi , There's different ones out there cheaper ones do same thing got mine on ebay 🥰
Iv just replied to a post above re steroids I to have severe emphysema and bronciatrasis plus severe osteoporosis
Iv had allot of steroids over the yrs but my life has come to a halt I can just about walk to my kitchen which is approx 10 metres
I do that walk several times a day to try and keep moving but have to rest to be able to get back to my lounge
So from read I’m going to mention maybe a small maintenance dose which just might help me? I’m already on a maintenance antibiotic which I have mon we’d say it’s called Azithromycin to try and prevent flares
My last severe flare was Dec but they say it was a none infectious flare
I always though flares were caused caused from infection apparently not in my case at Christmas
the side effects of steroids have to be carefully balanced against the benefits, short courses of up to 2-3 weeks are O/K and can be stopped dead but longer than that coming off them has to be carefully managed to avoid adrenal shock which can cause collapse and hospitalisation. A lot of the side effects are detrimental, brittle bones, weight gain etc. some people are stuck on them long term and have to put up with the side effects, but mainly GP will try and limit the use of steroids.
Ah sorry to read that you are feeling off the pace and have needed ‘rescue’ steroids.t They can be a big help can’t they although as others have said, if taken permanently can cause issues too. They can really mess with blood sugar levels as well which can bring another set of problems. Arrrrrggghhh!
I have severe COPD and find the winter a challenge. Exercising regularly really helps me and keeps me as well as I can be through the year. Assume you have been to a PR course?
Are your meds reviewed regularly ?
Asthma + Lung UK run online support groups and I have found them helpful- have you come across them ?
Hope you go from strength to strength now you are feeling a little better.
Go well,
Pauline
What about the steroids in the inhalers we use, do they cause the same symptoms as the oral ones when taken for years?
Mine did. Maximum dose Symbicort tipped me over my tolerance and I got adrenal insufficiency so now on 10mg daily hydrocortisone for life.
Hi Jack, yes they can do, however the dosage is much much lower than those in the rescue packs, so the effect of the steroids is much much less.
I am on high steroid dose inhaler now and have to carry a steroid card so a hospital would know that and not stop the inhaler suddenly to prevent a steroid withdrawal.
Hope this helps ?
Go well,
Pauline
Thanks Pauline, I’m on Trimbow 87/5/9 is this classed as a high dose. Reason I ask is that I am suffering disabling muscle/tendon issues, could this be cause possibly.
Hi Jack,
I am on a different inhaler with a much higher steroid dose.
If you are suffering from what you feel could be side effects then perhaps request an appointment with your surgery pharmacist who will be able to talk things through with you.
Go well.
Pauline
Sometimes those muscle/tendon issues can be caused by inhaled steroids, it can be helped by supplementing magnesium or potassium. There are some salts you can put in your bath, or spray or lotion you can rub on your skin, or perhaps tablets to supplement the magnesium. Eating a banana can help supplement potassium! You could try those and see if that helps.
I find that my inhaled steroids have thinned my skin on my forearms and shins, and I bruise and tear that skin very easily with bumps or gardening for instance. Not everyone gets that, I think some people have tried changing their inhaler to help. It depends on how much it upsets you really, and of course might not help.
Yes thanks Beech I’ve started doing all these things . The damage was caused originally by an antibiotic (Ciprofloxacin) don’t ever take this drug it is so dangerous, it’s ruined my life. So was asking to see if steroids was making things worse.
Thanks all for advise, will speak to pharmacist.
My answer to your question isn’t fact but I do believe with all the steroids Iv had over the yrs and taking my inhalers have contributed to my severe osteoporosis
Hi Pauline When you say you find the winters challenging, are you referring to the cold weather? For me, if it is dry and cold, I go out and walk for a good hour or two and feel great. However, if it is raining or even if it has stopped but is wet outside, I feel fatigued and short of breath when doing the same walk, i usually have to turn around and go home. So frustrating!
Thank you Christine
Hi Christine,
So pleased you can get out and walk in the cold weather - so good for you.
Yes the cold weather disables me- it reduces my ability to breathe by about 50%. I find I am much more breathless in the cold. Of course the supplementary oxygen is very cold too when breathing that in.
Many of us are affected by weather/ climate patterns. It is the humidity which gets me too. A drier warmer climate makes me feel so much better.
Keep warm and toasty Christine.
Go well,
Pauline
Hi
Do you find even when ur indoors if it’s raining do you find it harder to breath
I struggle to breath but have found if it’s raining I’m worse and I’m still indoors
I find winter is better for me because now the pollen has started
I’m also affected by humidity and have my air Purim 24/7 now it’s getting warmer my fans will go on
I also alway keep my heating low so it’s not to dry and will sit under a cover
I recently got a humidifier but in all honeoi can’t say it helps but maybe in summer I will benifit? Here’s hoping anyway but maybe a warmer air one would have been better ? It’s all still trial and error for me at the moment because I’m a prisoner in my own home not being able to step outside it’s very depressing for me
I’ve been on and off steroids for years but years ago they didn’t know the dangers of them, I’m one of the lucky ones that wasn’t affected by them and occasionally I’m given them to help me breathe better. Short doses are ok I suppose but they don’t like people on long doses anymore. I’m pleased they gave you relief, maybe if you mention this they may consider them again for you.
Take care
Wendy x
My GP prescribed me a low dose of prednisolone daily several years ago. For me they didn't help at all and were discontinued. I just have a course for flare ups as needed now.
Interesting... I didn't realise that pred was also prescribed for lung conditions. I was put on them when diagnosed with Polymyalgia Rheumatica (PMR) as they're just about the only thing that is prescribed in the UK to combat that condition. Initially on 15mg, that did nothing for the extreme pain and it was doubled to 30mg daily which got me my life back, to some extent - once they kicked in each day, about 3-4 hours after I'd taken them.
The alternative for PMR sufferers is methotrexate - a total no no for lung suffers as it can adversely affect them. I wasn't suitable: after a chest x-ray they found a 4cm growth (now removed, benign, signed off).
But you are still encouraged to taper as quickly as you can, within reasonable limits. I had to taper down to 10mg for my operation (from 30mg to 10mg in 3 months is a heck of a quick taper) and because they called me in early I'd only got to 12.5mg. That went back up to 15mg after the op, and I'm currently stuck at 7mg and in too much pain/discomfort to taper down yet.
Hopefully they find something to help you.
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