Very Little Mucous

[RoadRunner44]

Hi everyone, I suffer with bronchiectasis and was diagnosed 5 years ago. At the time I brought up a lot of mucous. Having been on a long term antibiotic.... colomycin for over a year my consultant has stopped it for the present. This was nearly two months ago. I have been experiencing, what I would call, a dry spell. Meaning, I hardly bring up any mucous now. When I use my acapella I cough and splutter and Im exhausted trying to move any mucous. Do you think I should continue trying to move it even though there appears to be nothing in my lungs to move? I don't see my consultant for another two months. Thanks.

[Hidden]

It looks as though the colomycin has done it's job, killed the bugs (for now) and reduced sputum production. As long as you feel well and can breathe ok I would suggest keeping an eye on the situation. Have a go to remove any mucus that you may have in your lungs to prevent the bugs having a party and basically getting om with life. Lucky uou!

[Hidden in reply to Hidden]

I have Sjogren's Syndrome which dries up all my body fluids (except wee 🙄) So my mucous is dry and hard. Can't blow my nose or cough up sputum. Can't cry either as I don't make tears either!!! 😖

[RoadRunner44 in reply to Hidden]

OMG. That sounds awful poems.

[Jaybird19 in reply to Hidden]

Oh poems that is awful. Must feel dreadful. Are you thirsty all the time?

do you have dry eyes too

[Hidden in reply to Jaybird19]

Not exactly thirsty Jaybird but my lips and tongue stick together. It's an autoimmune disease and sadly quite common. It's worse in my eyes.

[RoadRunner44 in reply to Hidden]

Hi Littlpom, Thanks for replying. Yes, I think the colomycin has done its job and I am, indeed lucky. However, I should tread with caution as the pseudos which were present a year ago are rarely killed off and can grow again. As I had been on the colomycin without being monitored, ( I was lost in the system) for so long I have possibly developed some side effects of neuropathy. The consultant said the only way to find out if it is the colomycin causing the pins and needles sensations in my hands and feet was to come off it. I just hope things are sorted out soon as obviously the colomycin helped enormously.

I expect you are looking forward to warmer and better weather too. Keep as well as you can. Chrys

[Hidden in reply to RoadRunner44]

Yes unfortunately the dear old pseudo does lurk. This is why we have to be ever vigilant for it beginning to have a party. I have been on that particular roundabout since 1986.

As for the neuropathy, so many drugs we take can cause it and coming off doesn’t necessarily repair the damage. Anyway, it is worth finding out and I hope that it may be the solution for you . Stay well x

[RoadRunner44 in reply to Hidden]

Thanks again Littlepom, it's good to have your thoughts. Chrys

[Redrum46 in reply to Hidden]

Hi is colomycin same as Azithromycin 💖

[Hidden in reply to Redrum46]

No. Azithromycin is a macrolide. It is taken as a tablet to help prevent infections. It is good against streptococcus and some other bacteria but not so good against pseudomonus, although it works for some people. I took it fir 5 years. It was goid at first then stopped working.

Colomycin is most affective against pseudomonas auriginosa. It cannot be absorbed by mouth. It is usually nebulised long term as a preventative or given as IV .

[santisuk in reply to Hidden]

"........Colomycin is most effective against pseudomonas....". Just to note that the 2019 version of the BTS guidelines puts oral ciprofoxacin as the 'recommended first line treatment' against pseudomonas aeruginosa and colomycin as one of the recommended second line treatments. Just saying - aint got no axes to grind one way or the other.

When I had my last annual review at Papworth I reported that I had been having troubles with a couple of bed drenching night sweats and they already knew that a year previously a deep dive sputum test (6 day culture, not the usual 2) had identified pseudomonas. They found my CRP inflammatory marker to be high and accordingly at this annual review they put me on on oral ciprofloxacin, so presumably they were following the guidelines.

Clearly if the colomycin worked for you Littlepom, all's lovely in the flower garden and I'll stop nit-picking! As the guidelines point out there is actually very little evidence-based fact that antibiotics as a general class actually improve patient outcomes for bronchiectasis, so we all carry on regardless and hopefully mostly hit the right buttons with a mix of experience and experiment.

[Hidden in reply to santisuk]

I was asked about colomycin particularly. I did wonder whether I should mention oral cipro in case somebody like you was tempted to shoot me down. I take 2 wks cipro as first line if the pseudo has a party.Colomycin is no good for me nebulised because it makes me breathless. I nebulise ceftazidime sometimes but mostly saline and ventolin with rigorous mucus emptying keeps me well.

My con wants to give me IV colomycin and meropenem together but I am avoiding it whilst I am doing ok. We bronchs are all so different, both in our personal management and antibiotic needs. That's what makes it so difficult to treat. I think with 67 years of managing mine I kniw what I am talking about. BTW my con wrote the latest guidelines.

[Splodge60 in reply to Hidden]

These same symptoms affect me too but I have so many things wrong with me, I don’t want another diagnosis!!!

[RoadRunner44 in reply to Hidden]

Hi Littlepom, I just came across your reply to me about a month ago. I was having a so called dry patch regarding bringing up mucous. You mentioned that the colomycin I was originally on had done the job but to keep an eye on the situation.

Well I have, but to my horror having been off the colomycin now since the beginning of December (three months) It has returned with vengeance! I'm bringing up the stuff all day long and although I don't feel unwell it is very unpleasant. Do you have any suggestions? Should I be concerned? I wont be seeing the consultant for another month.

Hoping you can help. Chrys x

[SquirrelsHolt]

Hi there RoadRunner44 and having read your post I'm wondering if you really should speak to your Consultant on the phone which can be easily arranged(especially if you explain to his/her Secretary) the position you are in.

I always think it's best to deal with issues straight away so that you can put your mind at rest.

Keep in touch won't you?🐿💕

[RoadRunner44 in reply to SquirrelsHolt]

Thanks for replying Squirrels. I'm actually going to be helping my old consultant with a group of medical students this week. It will be an opportunity to broach the subject as I won't be seeing the new consultant until next month. Good suggestion which reminded me I would be seeing him soon. Hope you are keeping reasonably well during this gloomy, damp weather.

[Hidden in reply to RoadRunner44]

That’s good. Two clever heads always better than one. Unless they don’t agree of course 🤣

[RoadRunner44 in reply to Hidden]

What a thought!

[Hidden in reply to RoadRunner44]

It happens! I’ve been there.☺️

[SquirrelsHolt in reply to Hidden]

Quite right Littlepom but doesn't the saying also say (and I'm whispering this to you,lol 🤫 ) "2 silly folks will make the same mistakes" 😂😂😂🐿💕

[Hidden in reply to SquirrelsHolt]

Hey Ho and unfortunately for most of them, I have been at this game much longer than they have. 🤭

[RoadRunner44 in reply to SquirrelsHolt]

Hey, you two, I heard that! Naughty, naughty.

[cofdrop-UK]

Great you are seeing your old consultant Chrys. Do you have a physio you could contact. They will probably have come across this before, if not they will have access to your consultant.

Good luck and let us know how you get on.

Love cx

[RoadRunner44 in reply to cofdrop-UK]

Hi, Lovely to hear from you. Yes, it will be great to see him again as I have such faith in him. The last time I helped him with the medical students was just before C hristmas and as I was lost in the system since he'd left he sorted things out right away and I saw the new consultant in early January. Just having a quick conversation with him will put my mind at rest. I worry because although I am, at the moment quite well(, probably the colomycin to thank.) I am not taking any medication for the bronchiectasis now so just hope I don't pick up an infection. I have recently had a blood checking the state of my immune system and cross my fingers it will be good news. Anyway, enough about my ailments. Keep warm and try to keep well. Best wishes, Chrys x

[Willanna]

Morning can I ask did you get your acapella your self to help or did your consultant /docter prescribed it, just wondering as thinking of get one are any good. Thanks

[RoadRunner44 in reply to Willanna]

Hi, Thanks for your e-mail. Yes, the consultant gave me the acapella. There are various kinds of these useful little things. I was first taught to do the huffing method to remove the mucous. Then following this up using the acapella. The special physio showed me how to use it. It is easy to use and yes, it's a very useful gadget. When you blow it rattles the tubes and inner parts of lungs which move the mucous. It is then easier to cough it up. Hope this helps. Ask your consultant about whether you would benefit by having one. Chrys

[Willanna in reply to RoadRunner44]

Thanks for your replay will ask consultant about it next time I see him. Keep well 👍

[BionicLady]

It does sound as if the Colo has done what it was meant to, I had the same result years ago when I took it every day for six months and I think I was well for something like 18 months.

The pseudo is always going to be lurking in the background but I am sure you know yourself when the signs of deterioration if they came back.

I am sorry to hear you got lost in the system and having to experience those side effects, I hope they wear off soon. I got the same thing with another drug called Ciprofloxacin but didn't realise what was going on and took it for weeks until it started to get worst then came off it straight away!

The syndrome you have sounds awful, I have never heard of it, but I can see where you could be getting confused signals.

Just keep a very close eye on things and see what the Consultant says when you see them soon, hopefully it would be good news, do let us know.

You sound as if you are on top of things which is good when living with Bronch as things can deteriorate very quickly and get much worst.

Take good care. 🌈

[RoadRunner44 in reply to BionicLady]

Thanks for your uplifting reply BionicLady. As you will agree, knowledge empowers us. Take care of yourself too. Here's looking forward to better weather and Spring. Chrys

[santisuk]

I'm on about half the volume of sputum I previously brought up before I went on prophylactic azithromycin and started to see a dramatic decline in the regularity of my infections 2-3 years ago.

I nonetheless still take a mucolytic and eat and excercise before a daily 15 minute session of deep breathing and coughing up what's there (only 20ml mostly now). It still gives me signals about whether an infection maybe approaching - mostly gives me confidence nothing is coming 'down the pike'.

If you are gaining no value at all I can't see the point in straining yourself though.

[RoadRunner44 in reply to santisuk]

Hello, Thanks for replying, I was lucky enough to see my old consultant today while working with first year medical students. I mentioned my problem of lack of phlegm and the spluttering and coughing experienced while trying to remove any.

He felt it was still important to continue to try to remove the phlegm , though difficult. Any left in the lungs or congealed in the tubes will encourage bacteria to settle he said, thus causing further infections.

He understood how difficult It is to expell because the fine tubes in the lungs are distorted. He suggested I try easy, regular exercise at home and a short, daily walk to see if that might also help. He also felt the colomycin had played a huge part in my current state of well-being and that the so called dry spell was something I shouldn't worry myself about. So for the time being I will take his advice and see how things go.

It's good to hear you are also doing well on your medication. Keep warm, keep well. Chrys

[santisuk]

Not difficult to keep warm RoadRunner. I live in Thailand! No rain for 3 months and sunny day after sunny day in the early and mid part of Dry Season.

[RoadRunner44 in reply to santisuk]

Im jealous!

[Caspiana]

Hello RR,🌼

How do you feel though? I think Little Pom is right. It has cleared your chest for now. If you feel good then I think you need not worry too much, but if you feel like there is congestion but it's just stuck then you'd probably best call your doctor. Take care. xx 😁👋

[RoadRunner44 in reply to Caspiana]

Hi Cas, I feel well Im so glad to say but was concerned about lack of mucous. Having so much at one time made me wonder what was happening. I'm delighted the colomycin worked for me as others haven't had the same experience.

However, I am taking my old consultants advice and will still try to do the huffing. Also gentle exercise and daily walks. It will not just help to unsettle the bacteria in the lungs he said but will help me feel good. The one thing I'm concerned about is that should I be taking something to replace the colomycin at the end of the 3 months. But as I have these dreadful neuropathic symptoms I have to wait the full 3 months to see if the colomycin is the cause of them. Because it worked I want to ensure I continue to be well.

Lovely to have your reply and concern. Chrys x

[MissKota]

Hi RoadRunner44,

I take carbocisteine which helps loosen and bring up the mucus. I prefer it to taking antibiotics, which I save for when I know I have an infection.

[RoadRunner44 in reply to MissKota]

Hi, Actually that dry period has past and I have mucous again. I am waiting to present mucous specimens again for analysis. Consultant will then determine what antibiotic is appropriate depending on the bugs found. I just hope the pseudos haven't grown again. I stopped nebulizing the antibiotic colomycin 3 months ago. I had developed neuropathy in hands, feet and experienced pains and strange feelings as if insects were crawling on me, It was suggested the colomycin may have been causing these possible side effects. As the neuropathy is still present it probably wasn't the colomycin. So that's the situation at the moment. It's a waiting game.

I also have kidney disease and am pre-diabetic. Of course these side effects could be linked to this. In view of the corona virus crisis it is unlikely any tests will now happen for the foreseeable future.

How about you.? How are you coping with your problems? Chrys

[MissKota in reply to RoadRunner44]

Have you had your B12 checked? That also causes very similar neuropathy.

[MissKota in reply to RoadRunner44]

My diabetes seems to be reasonably well controlled but I was recently diagnosed with cheiroarthropathy which causes stiffness in the fingers..

My main problem at the moment is falling blood pressure. My GP has been reducing my heart medications but as you know they can only go so low before risking a heart attack. As I’ve been getting dizzies and occasional blackout I’ve been referred to a ‘falls and syncope Clinic’ in the hope they will be able to find the cause.

The only positive from this coronavirus is the number of appointment cancellations so I’m able to be seen tomorrow instead of waiting months.