Bronchiectasis: first exacerbation since diagnosis

[GhostlyDinosaur]

Hi lovely lung folks,

I have my first infection since being diagnosed with bronchiectasis in August 2017. I've done as instructed: started taking rescue pack (Doxycycline 14 days) and submitted sputum sample to GP surgery. The Doxy is working beautifully - 7 days into course and I feel better every day.

Had a phone call from GP surgery telling me they found an infection in the sputum, and that I should stop taking Doxycycline and start on Erythromycin instead. I queried this (because Doxy is working) and the person said she'd ask the doctor. Next day I get another call saying yes, I must change antibiotics. No reason given except "this one will work". (And she wasn't able to tell me which bug was found.) That was yesterday.

I have collected the Erythromycin from chemist and find it's a 7 day course (which makes me even more suspicious) but at a double dose - described in the leaflet as "for particularly severe infections".

Still taking the Doxy...

I am afraid of stopping the Doxycycline (because it's working, because of risk of encouraging resistance in bugs, because...?)

I am afraid of starting a potentially inappropriate course of another antibiotic when it doesn't seem necessary.

I am afraid of my own ignorance and arrogance (who am I to think I know better than the doctor who hasn't examined me?)

I am also afraid of further annoying and alienating GP surgery (long story), and of being seen as antagonistic and/or anxious and/or demanding.

(Respiratory consultant at hospital discharged me as I'm self-managing ok; I have phoned his secretary for advice but not got through yet.)

Thank you for letting me rant! Any advice or experience would be much appreciated.

Many thanks,

Rachel

[sassy59]

Hi Rachel, if the doxy is working then why not stick with it. You should get advice from your respiratory consultant if possible of course.

The erythromycin is there if needed. Take care. Xxxx

[Spacecat1]

It may not be the right antibiotic for the infection they have found. If concerned ring your surgery at 11.30 (that's the usual time and ask to speak to your doctor ( that's the time for our surgery) ring in to check what time you can speak to your Doctor if not book appointment. Best to speak to doctors. As to why the change. They changed my antibiotics last year glad they did the one I have now work so much faster.but we are all different. But speak to your doctor first and he maybe able to tell you the type of infection you have. Good luck and hope you feel better soon.

[micktheknife]

Rachael,

I wouldn't worry about disease resistant bugs - these are caused by people bullying their GP when they have a cold :(, not from properly changed treatments.

If your GP recommends that you switch, there must be a reason, some bugs are resistant to older antibiotics, or it could be that one of your other meds is affected adversely by doxy.

I know that some GP's are ahem, a bit aloof, but I'd encourage you to research it yourself and don't be afraid to ask relevant questions.

In lung disease, patients are often better informed than GP's, we have time to research, and they don't.

[cofdrop-UK]

I think you should ask for a telephone consultation to speak to a doctor. You need to know what your sample has cutured. It must have shown sensitivity to Arithromycin in the lab but it’s a difficult one as you seem to be improving so much on the Doxy.

I really don’t understand why your consultant has discharged you. Everyone with bronchiectasis has to self manage. Even if your bronch is mild, it needs to be kept that way and monitored, even if that be annually. Did you consultant refer you to a respiratory physio and send you for a sweat test?

I hope you can get this sorted out. When on to the consultant’s secretary it might be an idea to ask if they would consider seeing you again. If your not happy with the consultant you saw, it’s actually easier to get to see one of your choice if you are discharged. Check out a respiratory consultant who has s special interest in cf/bronchiectasis and contact them to ask if they will see you and once they have agreed ask you GP to refer.

Don’t worry they will think this and that - with bronchiectasis you really do have to be your own advocate and yes very often you will know more than some of the docs you meet about bronch.

Good luck. Please let us know how you get on.

Cx