Advice on coping with bronchiectasis

And as Jackie said exercise is key

Xx

Many general practitioners and even some pulmonologist specialists seem to regard the standard treatment for bronchx as antibiotics. The well-informed and specialist ones add life-style changes like lung physio/exercise/good eats/good sleep, which are essential.

It was my Thai pulmonologist in the early stages of identifying and treating my (yet to be properly identified) disease who recommended the addition of other meds as support drugs that I should start with,and experiment in taking away, as I got confident with my own experiences and treatment plan. Those were:

* Anti-inflammatory meds. A lot of our side effects (coughing/sputum production/some pain aspects) are caused by inflammation of the lungs as much as they are by the presence of widened bronchioles and sputum. Cortiscosteroids are often prescribed to keep that in check. I found the cortiscosteroid content of 'Symbicort' inhaler to be helpful, though others will have periods taking a more powerful tablet form like prednisolone. The antibiotic azithromycin seems to be a rather special antibi in that it (uniquely among antibis?) has anti-inflammatory properties as well as anti-bacterial. There is a separate very active thread currently running about azithromycin and sufferers, including me, report very positively about it.

Bronchodliators. wheezing whistling and rattling are all defined as bronchospasms in the medical world and broncholdilators are the drugs that seek to minimise the effects. 'Symbicort' also has a bronchodliating content but the usual prescribed approach is phyllocontin continus tablets. A leading Thai pulmonologist mentioned to me that proper coffee is a natural bronchodliator and encouraged me to overrule my natural inclination of recent years to avoid too much caffeine. I upped my daily intake from one to 3 cups (but can't say I have noticed any difference)!

Actually, I didn't get on too well myself with phyllocontin - found it disturbed my sleep - but an alternative doxofilline ('Puroxan' works well for me; trouble is that I'm not sure it is available in all countries, even the UK.

Mucolytics are the drugs that thin out the sputum making it easier to cough up and may also reduce the rattle content of your breathing. Carbocysteine and acetylsteine are two almost identical mucolytic drugs, one of which is available in most (all?) countries.

You will find that drugs like 'Symbicort' (trade names are in quote marks) and phyllocontin (generic drug names are in italics) are more usually prescribed for asthma and/or COPD and bronchX is not mentioned on the medecine leaflets. My original pulmonolgist told me I did not have either, but not to worry about that as my symptoms showed some presentations in common, so said I should try them out and see if they helped - which they did. One or two pulmonologists since have said 'you could drop this or that out', out of principle I think (some Thia doctors have the Asian culture of liking authoritativeness and disliking challenge), but I stick with my self-assessment regimen and I do reduce my dose and even drop some out in good periods. With azithromycin I am getting down to the point where I only really feel the benefit from one puff morning and night of 'Symbicort' and the acetylcysteine mucolitic.

I'm not a doctor and newbies should always do things only with doctor's blessing. Always read the medecine leaflet thoroughly, watch out for side effects and monitor how/whether any support drug is helping. 'Oldbies' can experiment with taking doses down (except for antibis where dose reductions need to be within parameters of recognised prophylactic dose regimens to avoid building drug resistance*) to see what is the minimum required for steady state treatment.

Hope this helps. I would make sure you are doing all the lifestyle stuff religiously, and ask your doctor about supporting drugs. If he is unhelpful through budgetary or other reasons then time to find a (or another) specialist IMO. If you are having trouble sleeping make sure you are taking any bronchial drugs at least three hours before sleep (ditto food - and alcohol if you are stronger minded than me!). If I forget my drugs and take them after 9pm I can always feel it in my sleep or on waking. Late food is always a bummer for everybody.

* My Thai pulmonologist mildly admonished me for halving an 'Avelox' (moxifloxacin) dose last year, as there is 'no confirming research to support the efficacy of a prophylactic dose and we don't want to mess up an antibi that is an important strong rescue antibi in Thailand'. My UK Papworth immunologist was concerned when I mentioned playing with my already 3-a-week 250g prophylactic dose of azithromycin; I actually meant to convey an intention to drop it out for an experimental period altogether, but she was concerned I meant 2 a week or tablet-cutting, which she clearly did not support.

Welcome, elizabeth

There's not much more I can add that hasen't been mentioned already.

It sounds like your doctor is not aggressive enough with your illness. 

You should be using a nebulizer, inhaler and a flutter valve (acapella) to help loosen the mucus.  Also, people have seen an improvement with eliminating dairy products from their diet. Some say milk increases mucus production. I limit my dairy intake. Drink plenty of water. Eat heathy. Stay away from sick people. Some people take supplements (turmeric w/pepper has anti-inflammatory properties) and Manuka honey has antibiotic properties.  I take both every day. 

Find out which works for you, This is a great forum to give and recieve knowledge and support.  You are not alone.

Beth