Hi All about Bronchiectasis

Chest and lungs
1

I seem to have developed this after long illness with chest infection, flu, viral bronchitis, then pneumonia, one after the other, originally only had emphysema and recent ct scan showed pleural thickening, first I've hear about that (exposure to asbestos I believe)  

I had been given 6 lots of anti biotics and 2 lots of steroids from December all one week long except the last one finished about 3 weeks ago which was doxy for 2 weeks.  

As well as my existing lung inhaler meds, the new addition is carbocisteine.

I am seeing a specialist next month and hope to get more answers but I would like to ask people here who have been living with Bronchiectasis.

Does everyone with Bronchiectasis need to take carbocisteine?

Does everyone carry sticky on their lungs every day. ?

I rarely cough up but when I do its discoloured as you would get with chest infection but the last two sputum samples have come back;

Appearance Muco-Purulent  and

Culture no significant growth 

Is this usual?

Many thanks for any help and suggestions.

What is your usual course of antibiotics and duration when you have an infections?

Do you usually have steroid inhalers day to day?

Do you get prescribed prednisolone when you get a chest infection?

I am thinking I need a proper care plan, I am not confident that the GPs are experienced enough in helping to prevent further lung damage.  When I needed the most help I felt the medical profession failed me. Just a little vent. 

Many thanks for hearing me V

2

CT scan also indicated some bibasal bronchiectasis changes.  Previously I had never had a diagnosis of bronchiectasis.

I was stable with COPD emphysema for nearly 14 years with only a few 1 week long infections, then this winter the CT scan revealed a lot more going on.  The flu jab didn't nothing to protect me this year.

3

Hello Vee2

I was given carbo to help thin the mucus which helps when doing lung clearance excercises I don't think GP's are clued up about that at all. I was taught the excercises from a therapist in the respiratory section of the hospital That was about 12 years ago. With all the cutbacks that may not be possible now. I don't know I'm sure you'll feel much better when you can clear your lungs Good luck Also when I get antibiotics I get prednisone to take as well. Without the steroid the antibiotics don't seem to work

4

Hi Vee

Sorry to see that you, too, have crossed over from, ahem, mere COPD after a long series of infections.

I don't have a lot of advice. This sort of feels like being down the rabbit hole, with docs throwing antibiotics at us left, right and center. Not that I am faulting them. BX defies the current extent of medical knowledge so docs just try to keep up with it and apparently sometimes they & the patient luck onto something that works longer than just a month or 2. It seems that the folks on here who feel goid for a year at a time are on ABs long-term. I don't know that I could do that & my pulmo probably won't suggest it as I have so many allergies to ABs, we're afraid we might run completely out of effective meds.

I know several people on here mention carbocisteine. I alternate an herbal mucus thinner with plain guafenisin tablets. But I had chronic bronchitis COPD so of course I'm more prone to having a lot of crap anyway. Here they don't rest sputum as much as y'all do in the UK. The only time they wanted to test my mucus wasbwhen I was in the hospital and was completely dried out from all the benadryl that they had to give me so that I could tolerate the prednisone - same as your prednisolone, and I'm allergic to it.

I still do the inhalers I was on before, advair (steroids) and combivent. I also do the combivent in nebulizer form as much as possible and add budesonide twice daily. I use an a capella, a bladder device to help loosen & move the junk. Because that's not completely effective &my dog can't pound my chest for 15 minutes twice daily. But you may not need all that since you don't produce as much gunk.

What I have found is that this is the one disease which is far worse than descriptions found online, which just plain s*cks. I have not been able to walk for months. What's worse, I can't walk my dog. I keep thinking it may be time to give up the house & go into senior apartments but I will not give up my dog and without a yard, we'd be up the creek. It's depressing and frustrating and I can't go for a walk to shake off those feelings.

Just pay close attention to signs of something coming on.

5

Hi vee i myself ad chest infections for 2 yrs till.i went to see specalist after avin ct scan found out i ad bronchiectasis was give carbocistien 6 a day to help sputum thinner to bring up but not helping me ive been on 4 dif types antibotics since feb moxifloxacin 400mg azithromycin 250mg doxycycline 100mg now waiting to pick another courseof moxifloxacin due to chemist avin to order them i cough green sputum up yes i agree GP dont know ow to treat it i cant wait to go back see my specalist in aug may get more answers ope this helps you

6

Sympathies that you are struggling with the bronchiectasis aspects of your condition. I detect from viewing postings on this forum that those with a combination of COPD and bronchiectasis can have a tougher time than those like me with bronciectasis alone. But do put in some time to research further on this forum for ways of getting the best out of your bronchiectasis performance and it should help to improve your overall health.

The basics of any plan for bronchiectasis treatment would be:

* getting the best/consistent sleep that you can

* eating healthily in terms of volume and type of food; lots of fruit & veg; experiment with the stuff that others recommend (eg cider vinegar+honey for gut health, cutting out or down on dairy if sputum thickness is a problem)

*avoiding smoking - direct and passive

*getting weight under control - bronchX can increase the impact of any heart imperfections, so get the cholesterol and blood pressure under control

*daily exercise that increases your heart rate (don't be afraid to get out of breath is what my pumonologist said); the more the better

*daily sputum clearance excercises; there are leaflets that explain basic physio but at its simplest just lying on your back and/or side and inhaling deeply to 'huff' up and spit out the sputum (with periods of quiet breathing in between) is the basic approach; view postings of others to get other tips

*if your mucus is very thick or difficult to dislodge consider acquiring aids (acapellas, vibrating vests). Lots of discussion on these in this forum

*medications to improve:

-sputum clearance - many seem to benefit from mucolytics like carbocysteine and they seem to be low impact to most in terms of side effects

-breathing/keeping the airways open; steroids and bronchodilators in the form of inhalers or tablets

-antibiotics, either prophylactically to limit the potential for infection or to treat the onset of infection

A few other thoughts to adress your specific questions:

*I agree that GPs (in the UK, but probably worldwide) are not experienced enough to provide proper care. We should not be too hard on them. This disease is not common. Monitoring/advice by a pulmonologist is essential

*Prednisolone is a steroid which is an anti-inflammatory. If your doctor or pulmonologist or you thinks that inflammation is an issue for you (as it is either periodically or generally for most bronchiectasis sufferers) then it may well form part of your treatment; most of us have taken prednisolone at one time or another; the issue is that steroids have longer term side effects so they need to be treated with care. Inhaled steriods seem to be less problematic and are ok for short bursts of use, but I was slightly concerned by the implication of your posting that your GP had prescribed short bursts of prednisolone. As far as I know prednisolone takes some time to build up to be effective and I do know that they should not be stopped immediately, they need to be wound down with a stepped reducing dose

*There is no such thing as a "usual course of antibiotics" in terms of which antibi or length of treatment. 7 days is the minimum a UK doctor would prescribe an antibi for (any less is dodgy in terms of promoting resistance for your bugs to that antibi and those resistant bugs can then get out into the environment and prmote a potentially nation-wide and even world-wide resistance of a specific bacteria to that bug). It may not be sufficient to treat your condition and my experience is similar to another poster - I generally find 10 or 14 days are needed before I am confident that my infection is on the way out. If you press your GP for a longer course she/he will probably say "come back for more if the 7 days dosen't clear it". They have financial restrictions within the NHS. A pulmonologist would generally prescribe a longer dose

*Most (all?) bronciectasis sufferers have mucus on their lungs. It's stickiness is variable, so is its thickness, so is the ease with which it is coughed up. My own mucus is normally medium and comes up quite easily - both during the course of the day (as throat clearances without any coughing, or triggered as an impromptu cough or as response to active physio huff coughing). I take a daily mucolytic but I could probably get by without it - ie it helps marginally and gives me no issues.

*Many bronchiectasis sufferers get positive readings from their infected sputum which aids in using a targeted antibiotic. A few ('uncommon but not rare' per my pulmonologist) always get no specific bacteria identified results. Join the club - I am also one of those. When my infections were a bit more invasive, a year ago plus, my pulmonologist suggested that a broncoscopy might be useful to see if I had any particular strains. I see her again next month and would resist a procedure that is not guaranteed to find anything and slightly uncomfortable, given that my infections are now relatively infrequent (3 in the last year and only one was uncomfortable/lasting (more than a week).

* Having tried, under direction and then under my own self-prescription, various antibiotics over the 4 years of my diagnosed bronchiectasis, some of which worked well for a time and some hardly at all, I am now on a prophylactic dose 3 times a week of azithromycin. If I get an infection I step it up to the regular daily dose. The one time that did not kill the infection another pulmonologist recommended stepping back down to the prophylactic dose of azith and adding a full daily dose of Levafloxacin (which has worked well for me on pneumonia in the past); that worked within a matter of days.

*Azithromycin taken prophylactically is I think becoming the drug of choice for many bronciectasis sufferers who would otherwise get frequent or long-lasting infections. I observe that 4 out of 5 of those on this forum who mention azith report very positively on it. You should not immediately jump on it though - other less strong (and cheaper - for which reason NHS GPs may not readily prescribe it!) antibis may work just as well and taking prophylactic antibis can poduce longer term gut problems (though I have not experienced any).

*A poster raised the issue of not taking a particular antibi for fear of "running out" of antibis. While it is certainly sensible to start at the bottom and work your way though the range as slowly as you can tolerate let's not get too overboard on the "help, there's nothing left theory". If you 'run out' of tablet options then taking them in nebulised or intravenous form will probably be effective. If not there are specialised intravenous antibis taht we don't generally see. I have not yet seen a posting form someone reporting that they have exhausted all options. Still, as said, it is sensible to be cautious about switching up too quickly.

I've said enough. By all means ask more detailed questions if it helps

7

Many thanks everyone such very helpful information, my main concern is this past winter I had 6 lots of ABs none worked, I then got a two week course, I have still not recovered the breathing I had before all this started and to me its worrying because I went from flu to viral bronchitis, flu again then pneumonia, I was ill for over 4 months and still recovering, this has resulted in further lung damage because those ABs and courses of steroids did not work.  I can't afford (none of us can) to keep getting additional lung damage if the infections do not respond to treatment.

But I have 3 more things to investigate thanks to your replies  the acapella, neb meds when infection not responding to treatment, and at what point I should request IV meds.  I hope the specialist can give me a good plan of action to take in order to avoid further lung damage.  I will come back and let you know what I have been advised once I see the specialist.  Mind you its not a brinchiectasis specialist but respiratory generally.

I also the leaflet link very helpful from this page (for anyone else looking)

http://www.bronchiectasishelp.org.uk/

Apparently there are specialist Bronchiectasis clinics in UK the link above to leaflet mentions where they all are.  My nearest one is about an hours drive away, not sure if I will get referred their initially, its a long way to travel during cold winter months.  We will see.  At this stage I am probably not bad enough with the bronchectasis to be referred to a specialist clinic.

I am going to check out more on clearing the mucus off the lungs.

Many thanks all for all you help and support 

x x V x x

8

There's at least one in the States, in Denver. Might as well be in Europe as that's a mere 24+ hour drive. Right now no airline is going to let me on, and trains don't go that way.

9

That's an excellent website reference Vee2, but I could not find the link to the 'listing of bronchiectasis specialists in the UK' within it. Can you help us find it? New sufferers often raise questions where it would be helpful to give them such a reference.