Hoping those who have been living with BE for some time will have advice
Over the last 5 weeks I’ve been bringing up more mucus. Sent a specimen in 4 weeks ago which came back as negative…specimen before in December was also negative ( I have grown pseudomonas several times in the past though so know it’s lurking).. anyway carried on as usual.. &didn’t take my rescue cipro
But…I feel well…! ….& . not had any colds/ coughs at all that could have gone to my chest
Just annoyingly waking me up at night ..to cough up a decent amount
My question is…. Is this a normal progression for BE ? Or can you have an exacerbation and feel well at the same time..?
I only used to do a good 1 hour lung clearance late afternoon and now need to try an evening bedtime session as well.. which never produces much .. until 2.00 am when it needs to be coughed up🙄
Plus I now can feel it in my lung which is new to me ☹️
Just my left lung affected which I’m grateful for ..
Sorry for long rant…any tips on getting a full nights sleep would be helpful !😁
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Phill1
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Isn't bronch a cheeky little devil. Just when you think you've got it under control it starts playing games. You obviously know what you are doing with your daily management and have been scrupulously emptying your lungs at a time that suits you. ( afternoon for me also in spite of a lifetime of being nagged to do it in the morning). A sudden increase in the amount during the night in spite of you having followed your routine says to me that there is probably something going on. I had something similar after xmas, decided to take my cipro and it returned to normal. Obviously, extra efforts to get rid of the mucus even if it means tipping out of bed at 2am. I hope that you knock it on the head.
Think I may start my cipro if only because my lung feels a bit clogged up. Been holding back because I’ve had awful acid reflux with it in the past .. and my consultant may ask me to start on colistin which I was holding back on ☹️
I’ll send a specimen in tomorrow as well
Has it happened often with you where you felt well but needed to dampen down mucus production?
Yes frequently. Since I have been colonised with pseudomonas I have not felt nearly as poorly during exacerbations as I did when I had haemophillus infections. Symptoms usually more mucus, sometimes thicker and darker. Yes cipro is horrible. Always strips the skin off my lips and inside my mouth but needs must.
I’ve lived with bronch many years, as got older the mucus increased particularly now I’m less active. I try to clear it before bed, doesn’t always work. I’m on one daily Azithromycin 250, and have Cipro and Septrin in reserve, but not needing either since starting daily Azi last December. Interesting that my mucus stayed same. Good luck. Jean x
I’m still very active & well.. which is why I’m disappointed that mucus is increasing …taking 250 Azith every other day.. May ask consultant to increase to daily when I see him next month
Azith doesn't work well against pseudomonas.it works by keeping down general levels of inflammation and bacteria, starving pseudo of the chance to party. I took it for 5 yrs until it stopped working.Have been better since I have been just nebulising salbutamol and isotonic saline.
I sleep sitting nearly upright, as if I lay flat, I tend to fill up with muck. I have an adjustable bed now, but started years ago by sleeping in an easy chair in the living room. Also, since eradicating black mould from our home in April 2018, I've had no chest infections.
My mucus is changing colour frequently. Last night I was also awake coughing away. I’ve had 3 lots of antibiotics since November - my go to is doxycycline
Don’t really want more unless desperate. Take care x
I have had similar experience over the past few months. More than two courses of antibiotics have made little difference. Waiting for sputum sample to be tested. Otherwise, I feel ok. Odd.
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