Bronchiectasis

[Bouchaud20]

Dx with GPA in 2015, now newly dx with Bronchiectasis. Really really struggling, & doesn’t appear to be much available to help. Just wondered if anyone could offer any positive advice? TIA

[zoe69 Administrator Volunteer Vasculitis UK]

I am sorry to hear this. Have you been referred to have CPT exercises? I assume it would be physio or respiratory nurse you would have to see for that. Drink plenty of water and avoid cow milk (it is known to build mucus up). If you can exercise, it would help keeping your lungs in good condition.

There are airway clearance devices that can help loosen and clear mucus, ask your doctor if it would be helpful in your case.

I don't have bronchiectasis, but I had looked on it when my dad who had COPD and had bronchiectasis symptoms.

[Bouchaud20 in reply to zoe69]

Thank you so much for replying. I’m awaiting CT Scan results then expecting/hoping for a referral. I have read about the exercises & hoping they will help. Will avoid milk at all costs now, thank you. I do drink a lot of water so will keep at it. It’s so hard to go out or socialise as no one wants to see/hear you coughing up a disgusting mess! It’s completely exhausting & has floored me but I’ll dig deep again & battle on. Thank you 🙏

[Pompey3 in reply to Bouchaud20]

Hi I have GPA and at times suffer with thick mucus and difficulty clearing my lungs - I’ve found 2 things that really help. Carbocysteine is a mucus thinning pill you can get in prescription, that is massively helpful. An ENT also suggested I buy a nebuliser (good one required cost under £100) and NHS prescribe the medical grade saline to go in it, I find that keeps my airways moist and my body then kicks the gunk off my chest before I go out and end up in crisis. For me these two things have been transformatory.

No idea if this would help with your new dx of bronchiectasis but thought I’d mention anyway. All the very best take care.

[Bouchaud20 in reply to Pompey3]

Thank you so much, such a relief to hear of something that may help. I’ll definitely be asking about the thinning pill you mentioned. Had read about a nebuliser so will have a look into those too. Its 24/7 atm & completely exhausting, nights being the worst. Very grateful for your advice, hope it continues to help you. Thanks again.

[Pompey3 in reply to Bouchaud20]

Hi glad to be able to share what’s worked for me - I take Carbocisteine 375mg pills normal dose 1 pill 3x a day, but in crisis I’ve taken double this and it was much more potent. My Consultant ENT recommended it and my consultant nephrologist confirmed it’s pretty benign so ok long term. It can upset the tummy a bit but I’m ok with it. My GP put it on repeat prescription for me.

The nebuliser recommended by the ENT is Omron C102 Total - very easy to use and I took it up to 4x a day when I was in crisis, I felt like it saved my life!! Apparently cheaper ones aren’t powerful enough and each dose takes about 10mins. The Saline is 0.9% normal for nebulisers - people with cystic fibrosis take a different formulation so you might want to check with your medics what you need.

All the very best.

[Bouchaud20 in reply to Pompey3]

That’s brilliant, huge thank you. Hoping to see my Cons in the next week so will check it out with him. Nebuliser recommendation is also a massive help. I now have hope after being in a black hole. Hope you are keeping well too.

[Mooka]

Hi Bouchaud20

I was diagnosed with bronchiectasis over 10 years ago. Apparently it's very common in people with auto immune diseases. You should have a look at the lung conditions site on HU where you'll find a lot of people with bronchiectasis who will give you plenty of advice. The Lung conditions charity is excellent too. There's plenty on their website and they offer free online courses and information. Once you have your confirmed diagnosis you should be referred to a physio who will offer advice on clearing your lungs and whether a device to help would be appropriate. You should be prescribed something like carbocistene to thin the mucus. If you get an infection you will need two weeks of antibiotics. Your GP will probably argue against this but that is the protocol. Don't expect much help from your GP, unless they are exceptional, as they will probably treat you like you have COPD. You should also be able to take a sputum sample into the surgery to ensure you are on the right antibiotic for the bug you have. A lot of respiratory doctors don't understand it either, so a respiratory doctor that specialises in bronchiectasis is best. Look after your sinuses as any infection there will land on your lungs. Protocol also says you should have two weeks of rescue antibiotics at home to take at the first sign of an infection. Your consultant should advise your GP which one. You could also look up active cycle of breathing on YouTube. This is what the physio will teach you. I see there's people saying the wait to see one is about a year now so probably best to have a look now. Avoid people with colds - not always easy. Don't worry about it, but you will need to be proactive to keep yourself well. I assume you have some level of immune suppression so if your temperature does rise do seek help quickly. I can't think of anything else at the moment but do give me a shout if you have any other questions.

[Bouchaud20 in reply to Mooka]

Thank you so much for your reply & advice. I have Rituximab every 6 mths so am immunosuppressed, but my Cons is, potentially, looking at stopping this to allow me to recover some immunity as I just constantly have chest/lung infections/pnemonia/flu. I will have a look at the other sites you mentioned & thanks for the sound advice re GP’s & Drs in general. I very much want to be proactive & YouTube sounds useful, I’d not thought of that all at. Thank you again for replying, feeling more positive 💪

[Mooka]

I’m sorry to hear you’re having constant infections. Is anyone checking your immunoglobulin levels. Rituximab wiped mine out. It happens to around 5% of us leaving us unable to fight infections that others can shrug off. I’ve been on immunoglobulin replacement therapy for the last six years and improved greatly. I’m glad you’re feeling more positive as it’s just like learning to live with vasculitis.

[Bouchaud20 in reply to Mooka]

Thank you for replying. I’ve not heard of immunoglobulin replacement therapy so will ask at my next appt. I don’t seem to be able to fight anything off any more & permanently on anti biotics for something. So grateful for all the help & advice I’ve rec’d, it’s all so very useful. Hope you are keeping well too.

[Mooka]

Your problems are so similar to what I went through so I know how wretched you feel. . Your doctor can prescribe a prophylactic antibiotic to take three times a week to help with the infections. It is so important to get the sputum sample analysed to check you’re on the right antibiotics and that you take a two week course. Sadly they often come back negative for various reasons but always worth a try. I’m keeping well thank you.

[Bouchaud20 in reply to Mooka]

I’ve made a note of all you’ve said ready for my next appt. I feel much better with more knowledge! I usually have Doxycycline & have had 1/2 & 6 weeks courses at single/double & triple courses. They have helped but as soon as I finish the course everything goes back to square one. Glad you’re doing ok, long may it last. Thanks again,

[Bouchaud20 in reply to Mooka]

Could I just ask you if you’ve got any tips/advice for the nights? I kind of manage throughout the day but I spend every night sat in the side of the bed coughing & bringing stuff up. It’s so exhausting, would welcome any help, TIA

[Mooka]

Night times are the worst. I’m only like this when I have an infection. I drink warm honey and lemon and then sleep propped up. I have sometimes slept in a chair. Once you get used to clearing your lungs out doing that last thing will also help. Do you know when you will get your scan results? I’m sure getting some carbocisteine will help you get rid.

[Bouchaud20 in reply to Mooka]

Thank you, so relieved I’m not the only one. My Consultant has been on hol, he was back in today, so hoping hear by the end of the week or I will start chasing. Very grateful for all your help & advice.

[Mooka]

I hope you hear from him very soon and you start to get some help.

[Bouchaud20 in reply to Mooka]

Thank you 🤞🤞🤞