Hi, I have just be diagnosed over the phone by my GP after a CT scan I have been Percrabed NACSYS 600mg dissolvable tablets I do not get a lot of mucus if any unless I have an infection; so I was wondering if I should be taken these, I have been for a week now? I do suffer from fatigue and have done for around 6 months now.
I would love to get some Advice, and hear others stories! As this is all new to me, I also have mild emphysema and I have been asthmatic for as long as I can remember... I am in shock at the moment... 🙄
looking forward to hearing From you!
Have a lovely day
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Damali68
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Hello and welcome to our friendly group. While most of our members have COPD, there are a large number of us with Bronchiectasis, me for one. I'm sure some of the others will be along shortly to share advice and experiences. My story in short, is that I was diagnosed with late onset Asthma in my late 50s. After three years of treatment, and several chest infections, I had lung function tests and a CT scan. I was diagnosed with Bronchiectasis. I still don't know whether I also have Asthma. 🤔🙄
I too have late diagnosed bronchiectasis at 52 , unfortunately I had numerous bugs in my lungs which didn't respond well to certain antibiotics, it's been a rollercoaster but am now nearly back to my normal self much to the fantastic advice on this website ,take care and you'll be fine x
Hi I am also 52 and thank you for your reply it is reassuring to know that you are feeling much better, there is hope then... I think I am in shock at the moment, so glad I have found this site. x
If you google The British Lung Foundation, then once on their site explore. You will find lots of accurate information and blogs and vlogs by real people with lung conditions. There are some very uplifting stories on there.
No idea about the tablets as not heard of them before so sorry cannot help with that. I was diagnosed in March 2019 with Bronchiectasis after a CT scan. Not given any medication for it although I am on inhalers due to suffering from Emphysema which I have had for some 30years now. The bronchiectasis has never given me any undue problems apart from the odd bout of coughing which soon passes. The mucous I manage to relieve by the huffing technique. Hope this helps
Thank you for your reply very helpful, nice to hear that you Emphysema has not given you much trouble for a long time, going to ask my GP about table because I have got breathless since taking them!
I was diagnosed 4 years ago and was very ill for awhile. The tips here and online have helped. The encouragement here really gave me some hope. It takes awhile to know when you are ok or going into a flare. Everyone is a bit different. Using a nebulizer and doing chair yoga with breathing consistently have helped the most. You must also be kind to yourself, and accepting. I feel good today, but I can crash hard unexpectedly. I have a good physician who works with me and is very pro-active. It's a journey.
Thank you for your advice I am going to try and contact my consultant and GP about my tablets has I feel worse since I have been taking them, thank you again.
I have had extensive bronch since I was 3. Turned 70 a couple of weeks ago. I have had and still have ( shielding excepted) a very full life. This is due to being very lucky in my consultants, self management and the right antibiotic therapy when an exacerbation sets up. You need to check that your consultant is a bronchiectasis specialist. This is crucial because GPs know virtually nothing about bronch and general respiratory consultants very little more. They both tend to treat it like copd. It is a completely different condition, very complex and different in everybody who has it. General respiratory consultants do not have the extra training or the experience. The bronch specialist will need to decide on which antibiotics and delivery system you need for an exacerbation and advise your GP. They will also have a physio who will teach you the tecniques to empty your lungs.
If your consultant is not a bronch specialist, find one in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. This is the quality of the rest of your life which we are talking about and I am afraid that the attitude of a lot of the medical profession towards bronchiectasis is still shamefully casual unless we push them.
The drug which you have been given is meant to be an aid for those whose mucus is too thick for them to be able to move and expel it using breathing and exercise tecniques. It thins the mucus. It is very important that you develop a daily routine of emptying your lungs of any mucus in there because the bacteria which cause exacerbations lurk and party in the warm little pools down there, and bang, an exacerbation.
You say that you don’t have much mucus. This could indicate that you have mucus sitting down there which needs to be expelled or that you are just not making much mucus at the moment, which is great.
Either way, you need to learn the system of breathing to expel any that is there.
I do not take the type of drug that you have been given because they make me feel sick and the way that they thin the mucus means that it is so runny that it is difficult to get it all out. Tiny pools are left there whereas slightly thicker stuff comes up together. ( you will get used to these graphic descriptions 🤣). I nebulise saline and do A Lot of self physio.
Well, I gave you lots to think about.
We bronchs have to take control of our condition
We have to be vociferous in sourcing the right treatment.
We have to learn as much as possible about our condition.
Hello, Littlepom thank you you have given me a lot to think about, but thank you, for your advice, I have an appointment with my GP and have as sent my consultant an email, so I will check out my medication and find myself a bronch specialist, that is something I will be detained to do. I appreciate your advice thank you. 🙄
Great. Being pro active will help you so much. Don’t forget that we are all here for you with our own experiences of living with bronch which may help you.
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