What do you take?

[mollie2shoes]

I have bronchiectasis, not well controlled at present, two hospital admissions within 3 months for bad pseudomonas infections. I am on twice daily nebulised Colomycin that's all. Unless I get an infection when I am prescribed Ciprofloxacin which has horrid side effects (for me) and just been told that this disease is resistant to 99% of antibiotics. What do fellow sufferers take, any help much appreciated. ps not in UK

[Bkin]

Hi mollie

So sorry you have been so poorly. I hated that ciprofloxacin when I had to take it once, disgusting medicine. I haven't had any flare of bronchiectasis since I last had pneumonia, currently my only meds prescribed are the carbocisteine and I have doxycycline and prednisolone for when I get a chest infection, I have COPD as well so I guess my treatments are slightly different because of this. (several inhalers etc)

I didn't know bronchiectasis is so resistant to antibiotics no wonder my last infection went on for so long, 6 different ABs I had and 7 months recovery (that was chest infection, followed by flu followed by pneumonia), the lungs were not at all happy dealing with that lot.

I hope you are feeling a lot better real soon.

Best wishes BK

[Hidden in reply to Bkin]

Which 6 different abs did you have, Bkin? I’m just asking because that is highly unusual. In fact I’ve never heard of it before. Are you colonised with pseudomonas?

[Hidden]

Hi mollie, and welcome to the forum. As you’re colonised with pseudomonas, there’s only 1 oral antibiotic you can take (as I’m sure you know) and that’s cipro. However, many cannot take it because of side effects, primarily Achilles tendinitis. Take care if you get any pain at the back of your ankles, or difficulty walking. You’d have to stop taking it & contact your gp.

I nebulise colomycin too and usually it works well for me. The alternative is IV antibiotics such as meropenem or ceftazidime.

I also have asthma so I’m on bronchodilators & a steroid inhaler for that. Also anti-reflux meds as it’s important, if you’re prone to heartburn, not to inhale stomach acid. I take another, prophylactic antibiotic too - azithromycin - as it has anti inflammatory properties and deters bacteria.

Do you do daily airway clearance? This is the most essential part of our regime as airways clogged with mucus attract bugs & inhibit breathing. I don’t find carbocisteine helps at all. It works better in copd. Those of us with bronchiectasis often nebulise a 7% saline solution, which is quite strong but it definitely helps to liquefy our sputum.

If you haven’t been shown airway clearance please ask for a referral to a specialist lung physiotherapist as it’s so important. I could post you some how-to videos but you really need to be taught first-hand.

I do hope you can get your condition under better control x

Ed: if I get a flare up I take either doxycycline or a combination of flucloxacillin and amoxicillin

[B0xermad in reply to Hidden]

What an informative reply,well said and I totally agree with you 👍

[Hidden in reply to B0xermad]

ditto.... same for me.

[Hidden in reply to Hidden]

Ditto, stones! 😊

[Hidden in reply to B0xermad]

Why, thank you 😊

[sassy59 in reply to Hidden]

Excellent reply Hanne. Xxx

[Patsy164 in reply to Hidden]

Same as Hanne but I don't nebulise colomycin only saline. x

[Patk1]

I too have bronchiectasis,asthma,(+ more).i too take azithromycin 250mg x2 daily( prophylactic).i take carbocysteine twice,sometimes 3 times day to thin mucous + it helps.also nebuliser- salbutamol + hypertronic saline to thin mucous.also uniphyllin tablets,antihistamines,salbutamol inhaler+ 2 steroid inhalers.also rescue packs of antibiotics+steroids.plus omeprazole for gerd.As said above,u must learn to clear lungs minimum twice a day- its vital as mucous is a breeeding site for bugs😢.

Controlled breathing is a godsend to me+ also worth learning xx

[gingermusic]

Just out of hospital after a flare up of my Bronchiectasis where I was treated with Amoxiclav and Clarythromycin which cleared up my problem for now.

[Patk1 in reply to gingermusic]

Get well soon Gingermusic x

[B0xermad]

Same here amoxicillin, prednisolone, acetylcysteine mucolyte,azithromycin 500mg,and clearance technique is the best way for me. 2 pneumonia hospital stays and got back on my feet after 6weeks but the clearance is the only thing I'm really strict about.

[Mooka]

I have Bronchiectasis and pseudomonas. I am also immune compromised. When cipro stopped working for me I was given 2 weeks of two different iv antibiotics to hit it hard. Since then I have nebulised colomycin twice a day. This has kept me free of infection except for one dose of pneumonia. I also take carbocistene. Sadly I think not having close contact with my young grandchildren has helped enormously too. I hope you get sorted soon.

[Alberta56]

Welcome to the forum, Mollie. I have bronchiectasis and perhaps asthma. (Not sure. It may have burnt out.) My bronch is'nt nearly as bad as yours, but I have had some nasty flare ups, caused by the haemophilus bug. For my last flare up I was prescribed Doxycycline, which helped but did not knock the bugs out completely, though I still have it as an emergency pack, together with some prednisolone steroid tablets. I was prescribed Co- amoxiclav, which eventually did the trick. The other antibiotic I have been given in the past is Clarithromycin, which did not agree with me. We learn on this forum that what suits one person will not suit another.At the moment I take Relvar inhaler daily. 4 Carbocisteines daily and 3 Azithromycin tablets weekly. I also do chest clearance morning and evening. You need to be taught chest clearance techniques, if you haven't already been offered an opportunity. In this country we have pulmonary rehabilitation courses, somewhat messed up by covid- they might be available on the internet. I was prescribed a gadget called an AeroBika, which I found very helpful in bringing up sputum. There are various gadgets for sale on the internet: the dearest one is no better than the more reasonable ones.

Sorry to rabbit on so- I'm a bronchiectasis bore. And I haven't done my morning clearance yet. Best wishes- hope you are soon feeling better.

[Patk1 in reply to Alberta56]

Alberta56 i got immunised against haemophillus i nfluenzae as used to get ot frequently x

[Alberta56 in reply to Patk1]

No-one has ever suggested I should be immunised, but I haven't had haemophilus lately. I'll ask if I get it again. Thanks for that. That's what this forum is about- exchanging information.

[Patk1 in reply to Alberta56]

Yes it is.i responded well to HI immunisation.have jab and check antibodies 4wks later.ive not had HI infection since so gd luck.i.also had the pneumococcal repeated but v poor response to both types.maybe worth asking for those antibodies checking too x

[asafoetida2020]

Mollie,As antibiotics including macrolides were not helping my bronchiectasis I produced my own methods and programme which is in my self help book (Bronchiectasis; Taming It & Feeling Better). Copies bought through the FHT charity can help their funds.

I started asafoetida oil vapour inhalations and drinking my own home produced pulmonaria tea and these have helped together with my own specialised breathing method. Positivity plans, exercises and healthy living aspects also in my book.

The result has been great with my consultant very happy with what I do (she also hasn't criticised any of it).

I have also started a Facebook bronchiectasis self help group. My post nasal drip has reduced and I sleep better at night for it. Research I have initiated has shown 50% of respondents suffer with PND. My research has also uncovered the association of bronchiectasis to 'Yellow Nail Syndrome' not just with 'nail clubbing'.

Good luck with your health :you seem to be a positive person which is great.

[Maximonkey]

Hi Mollie, I take Azithromycin 3 times weekly. They work for me. When I have an infection I usually take doxycycline. Sorry to hear you have been ill twice so recently. I have kept well all through the pandemic but I must say I am more than a little worried about this coming winter. Hope this info helps. Take care, Maximonkey

[VELoce21]

Sorry to hear you have been so unwell. For flare ups I do a sputum sample before going on my Amoxicillin 500 and steroids. I wait for the results and often have to take coamoxiclav (awful side effects). Klebsiella pneumonia was difficult to clear. It took many months. I’ve had pseudomonas in the past, coliform,E Coli. I have a nebuliser with saline to loosen secretions. Also every day I take nacsys 600mg. Good luck