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Newly diagnosed, mild Bronchiectasis

Puzzled8 profile image
17 Replies

Hi, just joined the group. I had a phone consultation with Respiratory Consultant recently. He advised that I have mild bronchiectasis, after a high resolution lung scan. I already have heart issues - tachycardia, angina, 2 stents fitted - so suffer from breathlessness anyway. I’m not having too much trouble with phlegm at the moment but do have post nasal drip and have phlegm from that every day. (Don’t know if there’s any connection).

I have read a few posts here so far and most people seem to have emergency antibiotics. Just wondered if I should have these ? Consultant just said he would advise my gp to give me antibiotics immediately if I get any infection.

Great to find this group and look forward to learning more.

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17 Replies
Alberta56 profile image
Alberta56

Welcome to the forum, Puzzled.

Cornishman1966 profile image
Cornishman1966

I always have a couple of weeks' worth tucked away in the cupboard. Clarithromycin or Amoxicillin. Prednisolone too. Once I use them up, I just email my GP to ask for a replacement lot. If it keeps me out of hospital and becoming a strain on the NHS, he's more than happy to oblige. Take care.

Puzzled8 profile image
Puzzled8 in reply to Cornishman1966

Yes, Cornishman 1966 - seems like the sensible solution but sadly, according to other responses below, some surgeries are no longer following this process, at least for newly diagnosed patients. Can only presume it is due to recent supply problems for antibiotics. Will update on how it goes the first time I need them.

O2Trees profile image
O2Trees

All good and well but your GP wont be contactable at the weekends and general OOH times. And 111 doctors aren't likely to know much about bronchiectasis. If I were you I would ask your GP for an emergency pack - it's sods law that things always tend to go south at the weekends :(

And welcome!

Puzzled8 profile image
Puzzled8 in reply to O2Trees

Thanks O2Trees. Yes things do tend to go wrong out of hours! Sadly it seems that some surgeries no longer issue emergency packs, at least for those of us newly diagnosed. Hopefully it is highlighted on gp notes that I will need them and will just have to become very persistent !

Souielouie profile image
Souielouie

🥰

As O2Trees said you really need a rescue pack of antibiotics as these days its not easy to reach your GP quickly. Since being diagnosed with 'mild' bronchiectasis I have had a 2 week supply of doxycycline tucked away and its on my repeat prescription list. Perhaps your respiratory consultant is not a bronchiectasis specialist...I'm pretty sure if he/she were that's what would have been recommended.

Puzzled8 profile image
Puzzled8 in reply to

Thanks stones93. I absolutely agree about not being to reach gp quickly but it seems from other responses below, that some surgeries no longer issue emergency packs. I presume that those like yourself who already get them, will be ok - hope so anyway.

in reply to Puzzled8

You need to phone your consultant's secretary and get the consulrant to instruct your GP to givevyou an emergency pack and replace it when you have used it. Then the GP will have to do that. Also check that your con is a bronch specialist. If they were they should gave already done that. General respiratory cons do not know much about bronch or the complex care it needs. They tend to treat it like copd. If your con us not a bronch specialist,find one on the website of a big teaching hospital, take the name to your GP and insist on a referral. We really do have to be vociferous in our own interests. My antibiotics are on my repeat prescription list.

Tykelady profile image
Tykelady

I have post nasal drip which I am convinced does affect the amount of mucus I produce, particularly on waking. I don't think antibiotics would make a difference if that is your case but you can get a nasal spray which might help short term.

Puzzled8 profile image
Puzzled8 in reply to Tykelady

Thanks Tykelady. I have a steroid nasal spray for sinusitis although I have found that sometimes the mucus can sit at top of chest, just below throat, and I have had to have antibiotics for that.

Karenanne61 profile image
Karenanne61

Hi and welcome to this friendly, funny and informative forum. As others have said you should have a rescue pack as every exacerbation can further damage the lungs. However, gps are reluctant to give them now, expecting us to ring first. My consultant has written to the gp to 'suggest' that they continue to allow me a rescue pack at home. This is because I confessed I was loathe to use the rescue pack for a 'minor' exacerbation in case I needed it for a more serious one.

Puzzled8 profile image
Puzzled8 in reply to Karenanne61

Thanks Karenanne61. Yea seems things have probably changed for those of us newly diagnosed, probably due to recent reported shortages of antibiotics.

Karenanne61 profile image
Karenanne61 in reply to Puzzled8

It might be worth speaking to or emailing your consultant, if appropriate they can write to the gp advising them to issue you with a rescue pack. I think a blanket decision was made and we got caught in the crossfire.

Izb1 profile image
Izb1

Hi Puzzled8 and welcome to the site. I am sure your post nasal drip will contribute to chest problems so try to keep your lungs clear. My gp surgery has stopped issuing emergency packs, they are only for severe copd patients so have to contact them as and when i have an infection which can be a problem on the weekend x

Puzzled8 profile image
Puzzled8 in reply to Izb1

Hi Izb1, thanks for your reply. Yes the post nasal drip has in fact caused chest infections in the past, with mucus sitting at top of chest, just below throat. Seems from other replies that, as you say, emergency packs are no longer being issued at lots of surgeries. I think there was a supply problem recently which lead to shortages, so could be to do with that. Good to know it’s not just me !

Mooka profile image
Mooka

I think your consultant needs to advise your gp to give you rescue antibiotics. Mine do and I’ve not had any trouble so far. They are on my repeat prescriptions. You need to sort out the post nasal drip. Have you tried sterimar or neilmed. It’s all a learning curb but these usually someone here can answer your questions.

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