Hi all, I have been fairly well during the summer months, but as soon as weather changed I started feeling unwell no temp or cough just breathless and slow with a moist chest and more mucus.
I started steroids and went to GP for change in antibiotics, mainly as I go on a short holiday soon. I never know when to start taking steroids and how long for, 7,10, or reducing. And is anyone just taking one tab as maintenance.
Yo
Hank you, hope someone can help, as new GP I went to see had not even heard of Broncheichestis due to go to chest clinic at end of Sept, but that will be another ordeal.
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inhaler1
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I usually start steroids when I feel my chest tighten and my mucus start to turn. As a matter of course I will take 30mg for 5-7 days along with my rescue antibiotics. I won't taper off as its a short course.
I take a maintenance antibiotic called azithromycin which has been excellent for me. if your GP hasn't heard of Bronchiectasis then find one in the practice that has. Do you have a respiratory nurse? She might be able to help more around the issue of how and when to take your rescue meds.
Thank you Marie, I do take azithromycin, but seem to flare up more in the winter, my own GP at practice is very good, this was a young locus who I had to see as it was an emergency app.
Thank you again for your reply, never quite sure about steroids if no temp.
I never take my temperature - its more about how my chest is feeling. if its tightening up then I go for the steroids as they are anti-inflammatory and especially as my antibiotic in the rescue pack is Amoxycilin which is rubbish! I do hope you feel better soon.
Amoxycilin IS rubbish Marie. I struggled for years taking several courses (along with steroids) before a flare-up would subside. Now i have augmentin which is amoxy + clavulinic acid (sp?) which works in synergy with the amoxy to make it more active. It really works for me and many others i speak to.
Also many take doxycycline which has never worked for me. But talk to your GP about changing your rescue AB to one that works for you.
Thanks. When I started treatment at first (for a terrible chest infection) it was only after 3 months and different antibiotics (and a bronchoscopy) that doxy did the trick for me. The problem is is that whilst I have bronchiectasis I don't cough anything up so I don't have sputum to test. You are right - its something I am going to have to speak to the respiratory nurse about.
I know! I have tried to tell them. Was given carbosyteine to take to help it up. It made me cough but I had nothing to cough up so stopped it. I have PF anyway which is the bigger worry I think. But that's not on my GP records - but its what I go and see my consultant about. It feels so much complicated than it should be - I just don't understand why they don't have records and computer systems that can talk to each other!
Hard to believe your consultant hasn't written to your GP. Make it clear to her/him that they need to communicate with your GP. Also ask for a copy of the letter to be sent to you - this is our right as patients. I find i have to be keeper of information as communication isn't always good between different departments.
You're right though that PF is important - presumably you've told your GP and asked what treatment you need for that? I know nothing about PF so can't offer any suggestions. BLF helpline is always good for advice
btw i think i may have misunderstood what you say about bronch and sputum. I guess just because you don't cough up mucus doesn't mean it isn't there?
I get very tight chest with flare up and feel as though I have a blockage in chest not allowing me to cough up much much mucus I end up straining and leaves me with very sore throat
My doctors in France have left me on a maintenance dose of 10mg daily. I can increase this with any flare up. I have expressed my concerns about this maintenance dose, but it seems quite common here and certainly seems to work.
Thanks. Just now tapering off steroids after in and out of a few exacerbations since April! Think I may try the maintenance dose if I get worse again. X
Hi - I have bronchiectasis and my consultant said 'Hit it quick, hit it hard, hit it long' and recommends 10 days at 30mg then tapering off for five days for people with bronchiectasis. This certainly works for me as when the GPs prescribed five days within 48 hours the problem was back. Good luck with getting better in time for your holiday.
Thank you for your reply, yes I usually have ten days tapering off, I think I get a little impatient, as I usually feel better after 4 days so tempted to stop, but I am sure that is why symptoms come back after a few weeks.
Thank you for your reply, I shall keep up with the ten days reducing.
Hi - I have bronchiectasis and my consultant said 'Hit it quick, hit it hard, hit it long' and recommends 10 days at 30mg then tapering off for five days for people with bronchiectasis. This certainly works for me as when the GPs prescribed five days within 48 hours the problem was back. Good luck with getting better in time for your holiday.
hi inhaler, i can re-iterate your first post,, i was ok most of the summer, but the last 5-6 weeks,,,, bad,,,,,. always for about 5 hours am, then get some sort of respite, then worse again as the evening progresses , no infection, had sputum sample tested.etc etc,, if this carries on will have to phone doc.
off topic slightly,,but my carer phoned me 7,30 am [made my breathing worse, could barely speak], to say they are running late!!!,, then phoned 8,30am to see if anyone had called!!! [made me worse again] then the head co-ordinater came at 9,10 am,, asked me if i would phone doctor, or phone ambulance, i told her, i will leave it for the minute but if any worse,by about lunch time, would most definitely phone doctor .
little did i know she had phoned my brother[on answer machine!!] before she had even called here,,,to say i was bad,"and refused doc or hospital" - not entirely true!!!,,,,,, hes miles away,so he phoned my sister that evening when he got the message, who then drove up to my house to see how i was,, i was ok by this time.my old mother 91 years old, found out and worried herself off the face of the earth,,,, could this care place not have told me what they were doing? my no.1 contact is "jane" who can be here in minutes,she knows the score, her mother has copd,, anyway they have been told now, by "jane" and they have apologized.
today i waited on the carer for hours, but when "jane" phoned they said that a carer called at 7am,, but i was asleep?""the night catheter bag on the floor was "stapped" full,,,, they apologised for this too.
anyway inhaler, sorry to diverse, but when you are feeling bad , you want nothing to make you worse"",,,
in your case, i dont think much of your g,p. not even knowing what
bronchiectasis [spelt wrong] was.
i am in the same mind as you as far as steroids go,, but in my case, when you take your emergency steroids[usualy 8 a day for either 7 or 10 days] you need to inform your g.p which i think i might be forced to do, my problem is having large doses of steroids too often,for too long , in fact to go for a dexa scan 19th,,,,,but i know how you feel,, like me, willing to take anything to make you feel even a little better.
but im sure you will get better treatment at your chest clinic,,,,,i would phone the blf , at least they know what they are doing, and could advise accordingly.
sorry for the long post, but i know how lousy it is feeling lousy,,,, hope things improve and go well with you,
Hi Im steroid independant, started steroids age 15, now in my early fifties! Tried and tried to taper off, but when I do I get worse again, I have bronchiectasis, the lowest ive been on them is 7mg, with a new drug they tried me with, but when it was stopped had to boost steroids up. YES they have given me osteporosis and on tablets for that, and all the other side effects, but I dont regret taking them as I wouldnt be here today! Am hoping that Azithromycin is going to help
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