I was prescribed colomycin about 5 years ago for bronchiectasis. I nebulize it twice a day. My concern is that although I feel quite good I haven't had a review of my condition or given a sample of mucus for over a year and feel as if I've been forgotten. I have been working with medical students for about a year now. About every two months, and I love it. They have to ask questions to work out what I suffer with. As this is organised by my old consultant I mentioned my situation to him. He was quite shocked that I wasn't being monitored and is going to find out what has happened, I know I'm not as bad as many of you on the forum but what are your thoughts on being on colomycin so long. I know it's regarded as the last resort antibiotic but if it stops working for me what is the other alternative, I would really appreciate any ideas. Thank you.
Colomycin Treatment: I was prescribed... - Lung Conditions C...
Colomycin Treatment
Hi, I can’t tolerate colomycin as it makes be breathless but I have been nebulising ceftazidime fine for over 15 years. I see my consultant at least every 6 months, earlier if I need it.
What is criminal is that you have been left so long without a review by a bronchiectasis consultant. Do make sure that your consultant is an expert in bronch and not just a general respiratory consultant. I also work with students as a patient during their exams from year one to those applying to be consultants. Their training in bronch is woeful. You can’t expect your GP to be interested in the management and treatment that you have. They know absolutely nothing abour bronchiectasis and too often treat it like COPD. I hope that helped you to take the reigns of control.
Thanks Littlepom, I'm keen to find out what would happen if the colomycin stopped working for me.
You would star having exacerbations. I occasionally have to have cipro if I have had a virus which has let the peudomonas have a party which the the inhaled ab can't deal with. Usually I go back to the ceftazidime which keeps me virtually stable. If I were to get a lot of exacerbations which required oral or IV to knock it on the head, that wd be a sign that the inhaled ab wasn't working. It's no use relying on what is on lab plates. Pseudomonas is always there once you have it. The object is to keep the numbers low enough to lead a normal life.
Thanks Littlepom, I appreciate you replying in such depth. Another question if you have time. Do you know know the level you are at? I read about others here who seem to know their level but I don't know what l am.?
I think that it is those with COPD who have levels and stages. I have had extensive bronchievtasis all of my life so I just live with it and continue to have a very full life. If a really bad infection doesn't get me the detetioration in my spirometry etc, given that I have bronch is only in line with the same petcentage of detetioration which happens as people get older. For me, fretting about stages is a pointless exercise. Sorry I can't help more with thst.
Thanks again?
I can only tolerate a few antibiotics so I’ve ended up on colomycin, I’m told it is used for the long term but if it were to have an exacerbation, the dose can be increased. I am currently on a maintenance dose. When I was poorly, I was admitted to hospital for IV antibiotics.
How often do you see a consultant? Mine said it would be him monitoring sputum samples, as my GP seemed reluctant although I’ve heard some people do have GPs who are willing and able to routinely test sputum.
This is all still quite new to me so I hope this is helpful x
O yes, it is helpful. Since my consultant retired over a year ago I haven't seen anyone or had mucus samples analysed. I just find it strange that I appear much better than many on this Forum but am on a last resort antibiotic, colomycin. I'm not grumbling as I am in reasonably good health on the colomycin. Everyone knows the concerns of antibiotics and becoming immune to them. I'm just worried having been on colomycin so long without a break that I would become immune to it. I'm probably too anxious and should be grateful for being quite well in comparison to others.
Colomycin isn’t a last resort antibiotic. It is standard long term maintenance treatment for pseudomonas.
That's a relief to know Littlepoem but that's what it said on line when I researched it. That's why I was so concerned.
That's why we don't research online - fake information. You are doing great and are a true bronch hero X
Hi again, I forgot to ask you, what is regarded as a maintenance dose of colomycin? Also you mention V1 antibiotics. What is this?
I think you mean IV antibiotics (intravenous) ?
It's when an antibiotic is delivered into your arm via 'picc line' - a little device fitted to your arm and a tube inserted to get the antibiotic straight into the blood stream. Nothing to worry about and works faster than oral antibiotics so makes you better quicker.
Hi James, Thanks for your explanation. There are so many shortcut abbreviations used and I'm trying to make sense of them. The good news is I'm building up my knowledge and your post has added another to my list! Thank you. Chrys
I was in same situation as you as follow up appointment didn't come through. After a year rang Consultant secretary and it appeared the hospital had been trailing a system when the patient rings to make their own appointment 😕 but no one has told me. They admitted it was a daft idea as people were slipping through the net. I thought about poor elderly folks trying to do this & being forgotten about. Luckily that's all stopped & have great follow up with Dr & Bronchiectasis specialist nurse
It's good to hear your good news. I hope I get an appointment soon. Glad you are doing well.
Am also grateful that the GPs at our surgery admit their knowledge of B'ect is limited & go with how I'm feeling as opposed to whether sputum grows anything. After being colonised with Haemophilis a year ago even Consultant agrees that it can play a hiding game
I wish that there was a dictionary of Bronchiectasis available for us sufferers. Some here on this forum as self-taught "experts" (the very best sort) who know more about Bronx than most GPs do, simply because they have to live with the disease most of their lives. We are all at the mercy of the vagaries of the burden of treatment but self-management of Bronx is vitally necessary for us all. I hail the work and purpose of this BLF Forum in giving us knowledge of our lung life and its pains, and you , RoadRunner, help us attain this knowledge with your sharing of information.
Many thanks.
You are so right Cateran, I am so grateful I found this Forum and others like it. There is nothing like having hands on experience which our members have. In fact, I feel I am almost a part of a big family here and learnt so much more about lung conditions since joining.
Not a dictionary but you can access the "British Thoracic Society Guidelines for Bronchiectasis in Adults" (January 2019)
Google what I put in quote mark's to find the guidelines and download them. It's a fairly weighty 66 page tome and might be a bit daunting for the non-medic, but I suggest skimming through it for the section titles and headings to gain an appreciation of its content and structure. Also read anything headed 'Good Practice Points' and 'Recommendations'
Just going to Google The British Thoracic Society as you suggest. Sometimes it's useful to have this technology at hand.
I checked up as you suggested. Lots of useful information. Thanks.
Hi again, Would you be able to tell me how you know you have mild bronchiectasis? Also what do you take for it? I'm going to do what Santisuk suggested by googling the british thoracic society to see what's on there. Regards, Chrys
I'm mild too. There is no grading system for bronchX AFAIK, but if others are like me they will judge their bronchX to be mild if they have infrequent exacerbations (say no more than 2 a year) and find that even then their exacerbations are not horrible / no hospitalisation; also feel generally well when without exacerbations* and able to get on with life, excercise a reasonable amount daily etc. I don't cough much either.
My two bronchX specialists (one in Thailand where I live and one in Papworth Hospital Cambridge agree that I am a mild sufferer). I take prophylactic azithromycin 3 times a week (but am about to ask my specialist if I should consider dropping that out to see if I can do without it/keep it back, so I don't risk developing immunity). I also take NAC acetylcysteine mucolytic 600mg dissolving tablet every day to thin my sputum for a once-daily lung clearance**. I no longer take any inhalers after seeing BTS guidance that there is no evidence to support benefits arising from either inhaled (or oral) steroids or inhaled broncholdilators for bronchX sufferers
I don't congratulate myself that I am mild - we all know that things can go downhill. I have a slight threat on the horizon in that a 'deep dive' sputum test (I don't normally show results from the standard 2 day culture that is the benchmark) 6 months ago - a 6 day culture - revealed pseudomonas. My Thai specialist poo-pooed the relevance of that saying "if you look hard enough you will find that bug in most sufferers but you are mild, you feel well mostly don't you, so keep reaching for the last standard antibi that has been successful for any exacerbation that does come along (normally amoxycillin+clavulanic acid for me, or levafloxacin for pneumonia). I don't think my Papworth specialist agrees with that aspersion on a 6-day culture approach! I'm waiting to hear from her how my last (deep dive) sputum culture went, having recently had my annual review in the UK. Just to be safe she advised a 14 day ciprofloxacin tablet dose when I pitched up to that review complaining of 7 days of night cold-sweats (and no other symptoms or sputum colouration). That worked, so just maybe pseudomonas is on my horizon!
*Sometimes, for me, infections start to appear as marked by a slight colouring up of sputum, plus perhaps one or two other 'flags of infection' (eg non-fever temperature control issues, slightly less clean/deep breathing, night-time awakenings) but apparently my immune system tends to stop most of these developing further - I don't run immediately for the rescue antibiotic (you'll see that the BTS guidelines support such an approach, but that takes a bit of experience to judge it right and I don't recommend it for newbies). Surprising that my immune function does stop infections really, since I was diagnosed with secondary immune deficiency (whatever that means!) along with my bronchX 5 years ago.
**Carbocysteine is what the NHS prescribes as a mucolytic, being cheaper. I found it to be just as good as a sputum thinnner when I self-tested both over a 6 month revolving one-month trial of each; I stick with NAC in the (probably vain) hope that other supplement-like benefits claimed for it actually do accrue.
Oh what excellent information you have included in your post Sanisuk. I have gone over it a number of times now and it appears my bronchiectasis is mild to moderate. The information you have provided is so useful and I am extremely grateful to you for taking the time to write it.
I echo RoadRunner's praise of your contribution santisuk. This entry is formidable and learned. It makes me think that what I am really looking for is an encyclopedia of Bronchiectasis rather than a dictionary. You are a mine of information. Many thanks for your felt research.
Yes I agree recently I have found it comforting to read and hear from others in the same situation. I have had bronchectasis for years along with chronic bronchitis and asthma. And only recently have I realised that my lungs are on a slow decline . The Dr said my lungs are working 25%less than they were 1 year ago . It was a blow but really working on managing things.
Thanks all
Let's be strong 💪 x x
I am astonished you haven’t had a follow up for 5 years, even if you weren’t nebulising abs. Completely unacceptable and I hope your old consultant sorts this out but of course it might be down to you.
Oh the joys of student docs. They always make a beeline for us - they love the crackles and gunk - the cons know it can give them something to get their teeth into but they have to work for it. I always find it difficult not to give the game away when they get it right or wrong!
Oh and colo is not a last resort. There are other abs which can be nebulised. In fact my con has said that pretty much many abs could be nebulised but in my case he doesn’t think I would tolerate them as I can’t tolerate colo or tobra, but I also have asthma.
Hope you get sorted out with reguolar checks.
Cx
Hi cofdrop, Thanks for your post. I may have misled readers into thinking I haven't seen a consultant for five years. I must correct this? I was diagnosed with bronchiectasis some 4 or 5 yesrs ago. The consultant, after approximately three weeks put me on long term colomycin.I saw him regularly every 3 or 4 months as he monitored my condition. A year and a half ago he retired and since then I've seen nobody and had no sputum samples taken. I was concerned as I was nebulizing colomycin twice a day as were his last instructions. But knowing there is concern about becoming immune to long term antibiotics I was anxious to get reassurance. Fortunately my old consultant is going to find out what has happened and why I'm still not being monitored. Thanks for your interest cofdrop, it helps to discuss our concerns even if they are minor in comparison to others on here.
No worries. You do state quite clearly re sample or review that you haven’t been seen for over a year. You have not misled - my fault - apologies ☺️
Are you on Facebook RoadRunner44 ? I’ve joined a couple of groups which have been helpful in my learning. 
Hi crashdoll, yes, I'm on Facebook. What have you found useful? Chrys
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colomycin on its own or with Azithromycin 
Colomycin
