on my 5th week of Azithromicine which are doing me good, sputum almost gone. I asked GP about the steroids and was told for use only for exacerbation . He didn't prescribe any to keep at home. Saw a locum on Wednesday to get blood test results ,I told her how exhausted I was, sleeping a lot , coughing .She examined my chest and said how well I was able to do the cough. She said I must have the steroids at home when needed and would put a note on my file to that effect. Do others still need to use both when getting the symptoms they've had before?
Prednisolone/Azithromicin: on my 5th... - British Lung Foun...
British Lung Foundation
Morning Joyce. I've been on azithromyacin 3 times a week for many months now and feel so much better. The steroids sit in the draw as they make me very restless and hyper day and night. Hope your improving. Jane
Steroids can help but do tend to cause a lot of side effects. I would stick to your dr's advice and not take them.
I have been on Azithromycine 3 times a week for 2 years and Predisolone for longer varying doses subject to my condition anything between 40mg to 10 mg a day. Presently using 15 mg a day and cannot reduce without extreme breathlessness. I have been visited by a nurse and I have visited my GP this week and I am allowed to hold these medicines at home and self monitor. I so wish I could leave off the steroid because I have tissue thin skin and onset Osteoporosis and diabetes both steroid induced. Eyes and hearing have also been impaired by this combination but what is the alternative. I have not suffered a serious infection since I started Azith and the steroids help me breathe. I take a day at a time and stay well for that day anyway I can. With Emphysema COPD and 23 % lung I have little choice but try to enjoy life as much as I can.
Thank you for your reply you have helped me with your comments. 6 weeks ago I was visited by a hospital nurse as last year to monitor how I was with oxygen. She was very nice and told her I was happy with my inhalers but they didn't help to prevent chest infections which flared up towards the end of each month I had to reluctantly take amoxicillin and a7 day course of prednisolone. 30mg day it was then she said she would write to my doctor re Azithromycin . I was amazed when a copy of the GP letter arrived. It said she had re educated me on how to look out for a genuine infection (didn't happen) and if I continued with monthly rescue packs she would have to cancel the Azithromycin. That letter really destroyed my confidence I didn't take them for fun but out of sheer exhaustion, massive amounts of dark mucus. I got the tablets from theGP but he said I would not need the steroids. On Wednesday I had an appointment with another doctor re blood test results who read a copy of the letter on line. I told her my oxy levels were dropping to the low 80s after switching the machine off. She examined my chest which was fine but said Ishould get in touch with a respiratory nurse and gave me a prescription for the steroids. I have now started them and notice now my oxy levels are getting back to normal and I am not falling asleep all the time. My condition is not as severe as yours so I thank you for your reply and hope you keep as well as possible.
I didnt hit it off with my respiratory nurse either. Said she'd taught me better way to use spacer... load of rubbish!
I had flu in Feb and took til October to get off steroids.
Oxygen was dropping to 80 if moved out of bed, for loo for example...
Was told levels fine in bed.
I dont want to stay in bed, thats the problem!
Wouldnt be pleased to see her again. Lung function is 32%, have asthma, bronchiectasis.
Still manage to do most things with help with cleaning and ironing...
Husband helps a lot too.
Good luck and keep your chin up Joyce....
Hi Joyce, I can only speak to my own experience and live in California where the health care is oodles better than it seems in the the UK (emigrated in ‘77).
I have ‘mild’ bronchiectasis, bronchial asthma, and some other stuff. Had lots of infections but asked the doc for Azithromycin 3x and he had no problem with it. No infections in a month since ending antibiotics (resistant to almost all). I keep pred and use the minum dose I can when I feel the need.
To get to the point - I feel a similar fatigue to that you describe. To me, it means inflammation! I hold it off with NSAIDS (aspirin, ibuprofen, panadol/Tylenol. I even take a dose before sleep and again about an hour before I get up. It makes a big difference to me, though I may have to go back onto 10mg pred.
Incidentally, I alternate ibuprofen/Tylenol so I stay well within max dose.
I hope this helps.
Just to note that the anti inflammatory effect of NSAIDS typically only kick in after a couple of weeks use, so their impact is muted for casual users. Long term users have to consider the risks of NSAIDs as do 'the elderly' (do 67 year old count? I don't feel elderly!)
Thanks for that info santisuk. I did some research on the long term effects of NSAIDS and definitely learned something I didn’t know before.
My infections cause inflammation and the only treatment that I know for that is pred. 40mg is not unusual (for 3 days then taper).
I also experience mild inflammation without an infection - often every day, for which I take NSAIDS or pred if needed. My doc gives me the tools (meds) to self-treat usually, which causes consternation in my family sometimes. I’ll discuss NSAIDS with him at my next visit.
Yes I also self-manage my day-to-day treatment which is why I read up a lot. I'm a Brit living in Thailand (but still having my bronchiectasis monitored anually by Papworth Hospital). In this country all the regular oral antibis and NSAIDS and other painkillers are available to buy over the counter - but not steroids (or ED drugs!).
Steroids are certainly useful if properly handled and used only when there are no other effective options - even by someone like me who has secondary immunodeficiency
I don't know your condition so I'll limit my comment to the following.
Steroids are for asthma and are not recommended for bronchiectasis (per BTS guidelines)*. I don't know about COPD.
*Have not researched the latest BTS guidelines on that specific point, so it may have changed. Also I did accept a GP's guidance once on a bronchX exacerbation, which was to add a mild dose of prednisolone to the 'rescue' antibi and it worked well (but did nothing when I tried it myself the next time). Like most people I am loathe to take more steroids than are essential.
I have been taking the steroids since it was decided to self medicate by patients as a rescue pack in case of an emergency. A few months ago a hospital consultant visited the Breath Easy Group I attend and said that once you start on them you body gets lazy and stops producing its own. I have COPD and suffer side effects from them but seems they are lifesavers.
Pred does stop your body’s production of cortisone. It can be a real problem tapering off high doses, taken for a long time. Too large, too long, it might be a very long taper at very small changes. I’ve experienced this effect and wouldn’t wish the feeling of fatiguevon anyone.
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