Bronchiectasis

Thank you both, very helpful.

I have Doxycycline in my rescue pack.Other antibiotcs contraindicate with my heart meds. I always ask for anti sickness meds, as the nausea is awful.

I am on low dose Azithromycin, three times a week for life.It certainly has helped reduce the frequency of chest infections.
I break open the rescue pack, then phone ASAP.
I know when I have an infection, aching chrst, feeling unwell and feverish, breathing difficulties and of course dirty sputum, either yellow or green.

Tell your GP what your concerns are, * Mizuna*. 💐

Mizuna - that’s my problem too. I have Antibiotics on my repeat prescription., but I don’t really know when I should start them. Some nights when I cough more than usual, I feel I should start ABS and then, the next morning, I am fine. Strange disease 😫

I've had my first flare-up of bronchiectasis since my diagnosis in February. Paramedics were sent out yesterday because after two weeks of Amoxicillin and some Prednisolone nothing had changed and my pulse rocketed. Anyway, the paramedics were surprised I don't have a rescue pack of antibiotics/steroids. I see from re-reading this thread that some of you do.

I will raise this with my doctor but my query here is how would you know you've got a chest infection and therefore when to start using them? Do you call your doctor first and discuss it (our doctors are very accessible, especially for breathing problems)? Even if I'd had them I wouldn't have known I had a chest infection.

PS I had another antibiotic waiting for me at Superdrug which I couldn't get to and the paramedics collected it for me and dropped it back to my flat! It's Doxycycline 100mg so hopefully that will kick the infection into touch.

Thank you Marydoll and Lilypops. I need to look at this further x

I was on Ivabradine, but a hospital stay in Coronary Care, after my heart deteriorated, resulted in being taken off it. Apparently it was unsuitable for me.

I am fortunate in that my consultant is conducting research into this, funded by BHS.

In the past many women died from undiagnosed Cardiac Syndrome X. No-one was aware that this condition existed.

Marydoll We sound very similar but I don’t have RA. Thankfully, I also take clopidogrel for a TIA I had in December last year. Ranolozine and Isosorbide monotrate , Felodipine. Ivabradine. All these tablets but nothing for Bronchiectasis, mind you I don’t think I would have room for any more tablets. I wasn’t taking anything like this 10 years ago. Oh to turn the clock back to better health eh ,

Brown cow. I have micro vascular angina, when it was first diagnosed the Drs called it Syndrome X. As they didn’t really know what caused it or have a name for it. When I am out of breath , or out in cold weather or if it’s windy I get chest pain , the tiny micro veins tighten up , I use a gtn spray it does help but I get a bad headache for a while but the pain eases , I take Isosorbide monotrate (Monomax ). 60 Mg two daily and Ranolozine. Two daily. , both help a lot but I still have pain on exertion. I think I would be worse if I didn’t take them, I hope you can bet your DR to give you something that works for you.
Good Luck x

Apparently, my micro vascular angina is related to my R.A. The pressure in the tiny vessels in my heart is very high. It is triggered by exercise. It may be genetic.
I am part of a research study into it, funded by BHS.
I have clear arteries, low cholorestoral and no leaky valves.
All those years of healthy living have been a waste of time and energy!! I have been told that there is no specific treatment for it.

I have had two heart attacks and GNT spray doesn't make much difference. The angina was only discovered after a heart attack, caused by an allergic reaction to R.A medication.
Apparently I had unknowingly had it fror years, misdiagnosed as a sympton of my COPD.

I am on Ranolozine, Clopidrogel, Rampril, Amlodopine and Frusemide. It is reasonably stable at the moment.

Marydoll

Lilypops

Mary doll. Thankyou for replying. I also have Asthma and Angina , both controlled with meds and inhalers but nothing seems to be helping , I did go to a respiratory physio, but quite honestly it wasn’t helping so I cancelled any appointments , ido the breathing excercises at home but it doesn’t really help ,
I think I just have to live with this and just get on with it ,
I hope you feel better today x

I have microvascular angina too!

I think you should go back to your GP (I know it's difficult to see someone), I just kept on nagging, until he listened.

There are new drugs out (which I hope may help and be suitable), which is why I have been persisting.

Just because we are old and ill, doesn't mean we should be left to suffer.

I hope you get some relief. 💐

Marydoll, what treatment do you take for your micro vascular angina, and is yours triggered by emotional stress rather than exercise? I’m interested as I have had attacks that are not helped by a GNT spray.

Grandetante. That’s good advice regarding cleaning and dusting , I really don’t think I can get rid of carpets. , I don’t like wood floors and it’s a big old house , it would be cold and sound would echo I think. , I think I would rather buy a very powerful vacuum cleaner for the carpets. I just use a cordless Dyson. Thankyou

Hello jandraig Thankyou for taking the trouble to message. I have an emergency pack of antibiotics as well as a steroid prednisone. , as soon as I feel my chest may be infected I take them. And my inhalers too , I think I will try to get a physio appmnts again as so many posters have found it helpful ,
Frannygranny. Thankyou I am not on carbocisteine yet but maybe after seeing my GP. I maybe prescribed them. ,
It’s amazing just how many BX. suffers there are out there , I am not alone x

My DH has it and takes Carbocisteine capsules.It started after long covid but he has asthma as well.
He has just had another bout of covid last week, well we both have , it was nasty and he has now ended up with chest infection and has antibiotics and steroids.

Best to try and keep away from any infections with a lung impairment and make sure you seek help as soon as you feel your chest tightening.

Hello Lilypops, I too was diagnosed with bronchiectasis a year ago as I’d had a constant cough for about 6months. An X-ray showed a shadow, which a later CT scan revealed that the tube to one of my lungs and some smaller pockets inside the lung was affected.

Apparently as I’m currently healthy the consultant didn’t advise any treatment other than seeing my Dr. So each time I feel unwell, or cough up coloured sputum, I have to provide a sample which is sent to the hospital for testing to see what infection strain I have. If it’s the usual, I then start on my emergency pack of 14 day antibiotics (which we should all be given as a standby for home and holidays). The antibiotics I take are Doxycycline 100mg capsules. Initially I was worried about taking so many antibiotics, but my Dr reassured me that it was for the best as they keep the condition from getting worse. I also take up any Covid and Flu jabs and have learnt to take tissues wherever I go!

I find exercise very helpful, walking for stamina and ballet type (lots of arm movement/deep breathing which opens up the chest), for expelling that horrid mucus. When my chest seems clogged up, I found that inhaling steam, laced with about 10 Menthol granules by Care+ (it’s a tiny 5g pot) really helps.

I’ve also registered with a website called HealthUnlocked which is really useful. You specify your health condition and then have access to a forum populated by other sufferers who can offer great tips and advice.

Good luck with everything🥰 xx

I was diagnosed with bronchiectasis a few years ago after many severe chest infections. The root cause has been found to be TB at some point in my life (never diagnosed at the time).
I take 2 carbocisteine capsules morning and night. And on Monday, Wednesday and Friday I take an antibiotic, Azithromycin. I also have a supply of Arithromycin to take as soon as I feel a chest infection starting. I also saw a Respiratory Physiotherapist a number of times and he gave me some excellent tips and exercises to help my breathing. I sometimes sound like a dirty phone call!! 😂 Hope you manage to get the correct treatment.

Keep your bedroom as free of dust as humanly possible, because any lung complaint can be aggravated by dust.

If you do your own cleaning wear both gloves and a mask whilst dusting and hoovering and get rid of as many carpets, whether fitted or loose as you can bear to part with.

I had coughing and wheezing at night, that was waking me up. Doctor thought I had Asthma. After many tests it turned out to be an allergy to house dust mite. I now hoover the bed, and wash my bedding twice a week. All my symptoms have gone. without medication. I was on steroid inhalers for 35 years for Asthma, that was in fact allergies.

How treatments differs with different Gransnetters. Some of you are fortunate in that it was discovered early and are receiving treatment, a lot of damage is done, when diagnosis is late.

Mine was diagnosed about fifteen years ago and is quite severe, yet trying to get support is really difficult,
My former rheumatologist was brilliant at keeping tabs on it, There can be serious complcations if you have R.A, but a new consultant, sheilding and a useless GP have taken it's toll.

Good luck for Thursday, Lilypopos.

Hi Lilypops, the only side effect with Carbocisteine is a slight runny tummy if I take six a day as I have been this week because I have a heavy cold and found that my breathing had gone tight. Usually I take one capsule morning and evening and have no side effects. I also have a steroid nasal spray which I only use if I get a cold. Sometimes I'm not sure whether I'm treating my asthma or the bronchiectasis!

Incidentally, the Carbocisteine and nasal spray originated from a hospital stay earlier this year when I was admitted with a chest infection and that's when the bronchiectasis was discovered. I have just a tiny pocket of it in one lung, apparently.

I had a Flutiform inhaler prior to being changed to the Relvar Ellipta and used to wheeze every morning. I don't now.

Hi Mizuna. I have asthma and angina, I use a Fostair inhaler twice daily and a salbutamol as and when. I don’t know if they are helping really. I still wheeze every morning.
I find when I have a good laugh. I start coughing !! Can’t win
Do you have side effects at all with carbocysteine capsules. ?
I may ask my GP if she would recommend them. Thankyou everyone for your kind messages. It’s been very reassuring that I am not the “only one “ with this health problem. I have gained a lot by posting on gransnet.

Charley 68. Hi, I have got an appointment with my GP this Thursday for this and I am going to ask for a re referral for the physio. When I cancelled my appmnt with the physio I was feeling very down and not too well , I thought oh what’s the point it doesn’t help but on your advice and others I hope to see him again.
It’s a depressing thought that it’s not curable and I really hope it doesn’t worsen with age. I am 76 now and I hope to stay well for a long time ,

I have had asthma for years and then was diagnosed with bronchiectasis earlier this year. I have a Relvar inhaler for the asthma, which is excellent, and for the bronchiectasis I take Carbocisteine hard capsules in varying amounts depending on when I feel I need them. They are good at loosening the lung gunge.

Two other things help: singing, which I do to my guitar and laughing, which I make sure I do by watching reruns of my favourite comedy series. I also have one son who is very funny and we often have a good laugh. Unconventional maybe but both make a difference to my lung function. I never took to the lung exercises I was given. My condition is not very serious but I am aware that it could get worse as I age and keep an eye on things when I get a cold. I'm not under the doctor or a specialist any more.

Lilypops
I am a retired respiratory specialist nurse. I really think that you should reconsider the opportunity of respiratory physio.

When you are speaking to your GP, ask for a referral to a Respiratory physician/specialist at your local hospital.

Bronchiectasis is not curable, it is a chronic condition, and you need help and expert advice on how to manage it, and reduce the risk of any infections that will take quite a while to get over.
Take advantage of any flu/covid/pneumonia jabs. Eat a varied diet, and try to keep as fit as you can.
Respiratory physio is a very important help for you, and they will show you how to effectively clear your lungs, and will enable you to stay as well as possible for as long as possible.
Good luck.

Lilypops 🤞

Marydoll. I have an appointment this Thursday with Gp to get some more help. It’s so kind of everyone to offer advice and I really appreciate every message