What is the “best treatment” in bronchiectasis?

[Tdster43]

just interested in which treatments people living with bronchiectasis have led to the best improvement.. it’s a personal choice and nothing to do with guidelines question…

Thanks for sharing your answers!

[Hidden]

After 70 years of experience of living with bronch, the answer is simple and rather boring.

Self management combined with the care of a bronchiectasis specialist when it comes to antibiotics and their delivery systems.

I can date this to being six years old in 1956 when after six bouts of pneumonia in both lungs, a diagnosis of extensive bronch and a prognosis that I would not survive my next bout of pneumonia, my parents found a radical doctor in Leicester who had turned his attention to bronchiectasis because it was so ignored. Dr Mackenzie.

He started me on the form of treatment which most of us have today and from that time I turned from a child existing from one life threatening episode to another into a person who lived a full and active life whilst living with a complicated and debilitating condition.

He started me on inhaled penicillin through oxygen for six years, oral antibiotics for exacerbations, breathing classes once per month to teach me how to make the best use of the lung tissue I have and to empty my lungs as the major priority.

Daily sessions of emptying my lungs. At first over a true torture machine shaped like a wooden wigwam and accompanied by body bashing from my Mum. Later, physios went through various reinventions of expectoration methods, whilst I developed my own. Now what physios suggest and my own way of doing things are pretty much the same.

Alongside this came being forced into swimming pools, marched up cliff paths and bullied on to games fields when the asthma kids sat it out clutching their inhalers.

When I was 32 I met an amazing man at the QE in Birmingham. Dr Robert Stockley was studying bronch when nobody was interested. He taught the US that bronch was a condition in its own right at a conference in Las Vegas in 1986 and was forfront in teaching respiratory doctors in the UK and across the world to become specialists in it.

I owe him and his successor, who was his pupil, so much for keeping me well and stable and teaching me so much about my condition.

The management by use of Oral Antibiotics, inhaled and IV for exacerbations has developed.

Hopefully another drug, developed from Stockley’s research pre occupation dating from the 1970s is now being successfully trialled and this could prove a game changer for us all.

As we are all different the combination differs but the basic treatment routine remains the same.

Self management

The help of an expert who knows what they are doing.

[Tinker26 in reply to Hidden]

Amazing xx

[bazcranleigh in reply to Hidden]

Thanks, Littlepom, a very interesting read.

[Dottie11 in reply to Hidden]

So very interesting and important. Thank you for sharing.

[Morrison10 in reply to Hidden]

Your history is very interesting and good that you had such knowledgeable consultants. I was also seeing consultants at Qe Birmingham in 1960s, no help. I’m still patient there, now seeing Dr Sullivan because of my PCD, she is very good. Best wishes, Jean x

[Hidden in reply to Morrison10]

I didn’t go to the QE until 1982 when Stockley had recently taken over. I agree with you that Anita is very good. I knew her when she was a junior doctor being trained by him. She decided not to test me for PCD even though nobody knows what caused the pneumonias that caused the bronch. The test costs £350 and she said that even if I am PCD ( which could be highly likely) knowing at that stage of my life, about 15 years ago, would make no difference to my treatment. I’m glad that you know at least. It does solve a puzzle.

[Hidden in reply to Morrison10]

Actually I just remembered. In 1982 I went to a bronch clinic at the General Hospital which Stockley had formed. He had a tiny office and we sat in a corridor.

[Nula2]

Hi tdster43, I'm looking forward to peoples responses to your post as all tips are very well received. I was diagnosed about 5 years ago but had been coughing for about 10 years before that. I feel like I'm coping quite well with improving my clearance techniques but it's the breathlessness I find hardest. When I was first diagnosed it was the cough that was the main symptom and hardly any breathing problems but now I hardly cough at all in comparison but am so breathless when I try to do anything (walking, sweeping, hoovering etc) and the garden (e.g weeding) is getting beyond me now. There is always a huge amount of support from this forum but to see peoples different methods of coping all under one heading will be brilliant. 🙂

[Patk1]

Self management is key - clearing mucous frm lungs and airways, compliance with treatments,avoiding coughs,colds+ other bugs as they often result in exacerbations with bronchiectasis ; 2wks minimum antibiotics + steroids if inflammation present with infection.Carbocysteine and hypertronic saline nebs, inhalers,bronchodilaters + prophylactic a/b

[BronchyBronwen]

I have this condition, but mildly now. Likely result of whooping cough when young, and both parents had had TB. Rescue packs of amoxycillin on exacerbation. Am far more fortunate than many on here. Huge improvement since the pandemic, as result of living in relative isolation. Avoiding bugs. No surprises there. Now out and about more, still wearing mask on buses, cinemas and on rare visits to shops (still ordering most things online). Tried some mucus clearance as advised in the early days, about 8 years ago or so. Am sure singing in choirs and walking still helps hugely to keep it mild.

[B0xermad]

Hi ,for me a morning routine is key starting with ventolin seretide and nacsys 600mg effervescent tablets then clearance using an acapella device, plenty of water during the day 2litres keeping moving often walking the dog 15mins, breathe easy gym once a week and finding things to do without sitting for long periods of time. Definitely keeping away from germs as much as I am able due to having lots of small grandchildren makes it harder but if they are ill keep them from visiting and do a video call instead. Rescue pack of prednisolone and amoxicillin is key too have in supply. And know yourself and the symptoms of an exacerbation to treat asap .I also have a very good relationship with my respiratory department nurse who will give me help and support over the phone which has been a godsend.

[Lfcpremier]

Azithromycin 3x weekly makes a huge difference for 11years now. But the downside is my tolerance of antibiotics. Also nebulising 7%saline & Carbocisteine.

Very few drugs available & hardly any research sadly.

[LissacFrance]

My wife was diagnosed in UK with Bronc about 55 years ago. Did not really affect her until last 10 years. Now in France she was treated for asthma with inhalers, no good whatsoever, different inhaler to dry up the mucus, dried her eyes up and caused problems. finally about 5 years ago found someone who knew what she was talking about who put her onto Azithromycin 3x per week, and physiotherapy again 3x per week. Lungs not as good as they were but still OK. Have a good day, Chris.

[Lutontown]

Keeping black mould from our home, and sleeping with my trunk fairly upright. If I lay down I fill up with muck.

[GintyFerguson]

I have asthma and bronch. I take Incruse and Fostair, good eating, good exercise, good hydration, avoid crowded places and anall children. Avoid cut flowers , smoke and paint ! Clear lungs when necessary. Take supplements vit C, D , zinc , fish oil. Doxycycline if exacerbation. Generally try to pace self , not become too tired. That's about it ! Goid luck.

[Izb1]

I am sure my bronchiectasis wouldn't be so bad if I didn't have sinus problems. The cough drives me potty and blowing my nose all day, things which i can't control and have learned to live with. I make sure to clear my lungs and this can go on for longer than I would wish at times. We each have a way of dealing with problems and some work better at different times all on how you are feeling that day. I hope you find a way of dealing with the problems that you have x

[Schmu in reply to Izb1]

Sometimes I think my bronchiectasis causes my sinus problems? I have been working on cleaning out all (I mean everything) the gunk from my nose with pretty powerful blowing, and neti pot therapy. That has really kept the cycle of infection and exacerbation under control. Also, if I feel a cold coming on I suck on zinc cough drops. Most importantly, I follow the advice of my trusted medical professional, because what works for me might not work for you! Do you blow out yellow stuff or clear?

[Izb1 in reply to Schmu]

I use Sterimar 3/4 times a day to keep my nose clear and suck on Jakemans. The stuff I blow out is nearly always yellow, almost luminous (yuk). I had a sinus op a couple of years ago which helped to stem the amount of mucus but has since returned to almost where it was before the op and not sure this is because I ended up with a hole in my septum. I was discharged from the hospital with the consultant saying there was nothing more he could do for me, so have to fend for myself x

[Patk1 in reply to Izb1]

I use budesonide spray 2x day currently,fenofexadine+ loratidine + montelukast ( was for asthma but benefited nose+ sinuses).i bought 2 sm air purifiers cpl mths ago - frm 1st night on in my bedroom I could actually breathe thro nose.whn infected amoxicillin clears them.I use nasal/ sinus rinse whn pains bad

[Izb1 in reply to Patk1]

I use a steroid nasal spray but dont like using it all the time as with antihistamine they help to dry you up but when they wear of i feel even more stuffed up. Inhalers again i dont use all the time as they only work intermittently. I have a wedge under my mattress to help with drainage.Amoxicillin is about as useless as smarties for me so stick to Doxy but even that doesn't always work x

[Patk1 in reply to Izb1]

It works for my sinuses but need doxy 2xday for chest x

[Catsncrochet in reply to Izb1]

do you rinse your sinuses out? I’ve found that helps, though it’s not pleasant. I use a bottle called a water pulse off Amazon, which comes with salt sachets

[Izb1 in reply to Catsncrochet]

Yes my sinus's get rinsed 3/4 times a day with Sterimar x

[Catsncrochet in reply to Izb1]

I tried that but it’s nowhere near as effective as a sinus rinse where you’re squirting about 300 of warm saline up one nostril and tilting your head so it comes out of the other.

[Alberta56]

Hello and welcome. My bronc is relatively mild. Since I was diagnosed and given a course of pulmonary rehab back in 2 019, I have only had one bad infection. I do ACB lung clearance every morning, try (try is the operative word) to eat healthily and take enough exercise. My main problems are getting out of breath going up hill and falling asleep during the day time. I think the cause is that my heart is having to work too hard to pump such oxygen as it gets to the bits of me demanding it. So I have good days and bad days. Winter does not help me at all- no outdoor exercise, so I go to Pilates classes. I'm on Relvar, Carbocisteine and Azithromycin. The combination seems to work for me. Good luck- we're all different, but I'm sure you will find what works best for you.

[LMEI]

I always seem to be taking one step forward and two steps back. I have pseudomonas as well which doesn't help.

I clear my lungs 2 or 3 times a day by postural drainage. I found the flutter device too exhausting. I nebulise Colomycin twice a day. I have a maintenance dose of 15mg prednisolone. I try to get out for a walk every day, although I couldn't get out in the cold weather.

I have taken Littlepom's advice and asked my chest consultant to refer me to a bronch specialist at Leicester. I think it is too late for him to do anything but who knows. I see him the end of June.

Just trying to stay positive. Drinking plenty of water. Being propped up in bed. Exercise. And a supportive husband and family helps. And especially lung clearance. Always getting back up when you get knocked down!

Linda

[Hidden in reply to LMEI]

well done on getting yourself to a bronch expert and to the consultant who agreed to refer you. You seem to be doing everything right but maybe the expert or their physio can tweak something to make things easier for you. it will be good to know that you have them there for times when the bronch causes trouble and their expertise in dealing with it will be very helpful. Good luck.

[LMEI in reply to Hidden]

Thank you Littlepom. I listen and learn from you.

Linda

[Hidden in reply to LMEI]

Thank you Linda. I hope that I am some support for you.

[Nula2 in reply to LMEI]

Hi Linda 🙋‍♀️could you explain postural drainage? Is it bending over? Sorry if this is a silly question, I probably should know the answer 🙄. Thank you 🙂xxx

[Patk1 in reply to Nula2]

I was taught to lie on side eg on bed with 1 pillow if needed, st shoulder slightly forward,with arm in front & use active cycle of breathing + flutter device.i also use percussion- gentle soft fist taps down lungs and chest,where I can reach. I prefer to thn sit up to expectorate + lie back down.hope ths helpsNula2 x

[Nula2 in reply to Patk1]

Thank you Linda, I think you've explained the soft fist taps to me before which I do sometimes if I have extra lot of mucus. Will try lying on my side 🙂👍xxx

[LMEI in reply to Nula2]

Hi Nula2

My husband has made a board for me which I lay on, head below my feet. I lay on each side and also twist a bit so am laying on my shoulder blade (cannot lay on my back, I feel as though I will drown). Whilst lying down I do the active cycle of breathing.

I will also add that attached to the board underneath is a DIY tool (I think it was a sander), which when turned on, then vibrates, so you get vibration and gravity. It helps for me. I do also do the patting of the lungs at times as well.

Hope this helps. My consultant never rates postural drainage, but it works for me.

Linda

[Nula2 in reply to LMEI]

Thank you Linda 🙂xxx

[Catsncrochet]

I sleep in a bed which has wooden blocks under the top legs so my bed is elevated. I take carbosistein, Fostair, qvar and Spiriva. If I have any build up , I clear my chest with a physio air device and have Coamoxiclav, prednisilone and nebulised saline, salbutamol and atrovent for exacerbations. I try increasing my Fostair to 3x2 pd for 3 days before going further. I try to get rid of exacerbations without using pred if I can, monitoring my O2 to check it stays above 92%

Pred works but it’s hard on my system. I also have to take zopiclone when on high dose pred.

Hope that helps.

[Nula2 in reply to Catsncrochet]

I have some books under the head end of my bed legs but would prefer wooden blocks. Did you buy them for the purpose or just happen to have them? Thank you 🙂

[Catsncrochet in reply to Nula2]

they were in our log pile as we sometimes get hardwood offcuts from a local kitchen construction firm

[Nula2 in reply to Catsncrochet]

Ah thank you. Was hoping I could buy some blocks but the books (and bricks!) I have are doing the job 👍🙂xxx

[Morrison10]

I was born in 1935, with PCD. During war I had several problems, including a broken flattened nose when air raid shelter partly collapsed. I had pleurisy and pneumonia in 1946 treated with kaolin poultices. Took me months to recover. In 1953 chest X-ray showed heart on wrong side. I recall that about 1960 when had pleurisy had first antibiotic and it worked like magic. I was having regular chest problems and in about 1965 GP sent me to respiratory consultant at Good Hope Hospital, Dr Bass. He was very good, spent weeks reading libraries of medical books, and diagnosed PCD including bronchiectasis etc. He referred me to Prof Whitfield at QE Birmingham, and spent about week in bed there. His main advice was not to go out when cold wet or windy, and to have a leisurely life. I replied that I had 2 young daughters and that I lived in UK. I continued seeing respiratory consultants at QE, and few years ago when not happy with lack treatment, looked on line and paid to see qualifications and interests of all PCD consultants in midlands, and found Dr Sullivan, who is very good. I now Nebulise twice daily with Salbutamol and saline, then do postural drainage, and take one daily Azithromycin. Been on Azithromycin over 5 months, and have not had to stop it to take rescue Ciprofloxacin. Also take 4 daily Carbocisteine and balance medication. I pay for twice weekly respiratory physio. In 2021 I drove to Leicester Royal Infirmary to see Prof O’Callaghan who did simple test confirmed PCD. I have not let it stop me traveling etc both through work and holidays, have been all over Europe, States etc. However covid and increasing age have slowed life down, also my husband died 7 years ago and I now live alone. My mother lived alone until 111 when slight fall resulted in her being put under Liverpool care plan, disgraceful.