What would be the first symptom to alert you to start using your reserve pack of meds?

[Hollyhockhattie]

Also my GP has disregarded the antibiotic that has been recorded on my discharge papers and has given me two packs of ( one of each), augmentin and clarythromycin. No mention of taking them both together or one first then the other. I'm confused and fed up going to see him. I have bronchiectasis. I don't want to take them if I don't need them and I don't want to wait until an infection has set in. Thanks, Holly.

[Hidden]

Hi my husband has Copd and has been told that if two of the following symptoms get worse to start the rescue meds:

More coughing

More breathless

Change in colour of sputum

A phone call to the helpline in the morning could help you with advise on what meds to take.

Take care with love TAD x x

[Keeps-smiling in reply to Hidden]

Hello, quite new to the forum and found this reply very helpful, had bronchiectasis for about 2 years now and also struggle to decide whether I need to take my antibiotics, also found my GP quite unhelpful when seeing her last week

[cofdrop-UK in reply to Keeps-smiling]

Hi KS - I hope you also have a respiratory consultant with a special interest in cf/bronchiectasis - you defo should have one. In what way was your GP unhelpful hun?

love cx

[Keeps-smiling in reply to cofdrop-UK]

Hello, sorry for the delay in replying, dont always have time. Doctor was very dismissive, very much appointment over, but, then visited my asthma nurse a few days later and had a good chat with her, although she seemed surprised that I still didnt go the hopital or saw a respiratory nurse, mmm makes me wonder, have noticed quite a decline at our local surgery with the service they provide. Anyhow on the clarithromycin, and see how it go's. K-s x

[cofdrop-UK in reply to Keeps-smiling]

No wonder your asthma nurse is surprised you do not attend the hospital for your bronchiectasis. You really should be under the care of a respiratory consultant with a special interest in cf/bronchiectasis. They will also take care of your asthma (I have had bronchiectasis since babyhood 65 years ago and more recently asthma. You are being short changed and deserve better. Please be more assertive with your GP and ask for a referal - don't let him/her fob you off.

If you wish you can pm me and give me a city you can get to and I can let you know where the nearest cf centre is.

love cx

[Keeps-smiling in reply to cofdrop-UK]

Hi, thanks for that, think also the doctor that was treating me that had knowledge of bronchiectasis has retired, there have been a few changes in the surgery and to be honest no one seems to care much, going back to doctors next week, different doctor, see what happens, I live nr Leeds, was seeing specialist at Dews, but then he put me back under the doctors care, but said if I need the hospital the doctor would sort it out. I tend to just get on with it, but sometimes struggle with work feel so shattered with it. Husband coming with me next week, moral support, see what they say then, that is if I can get an appointment tho, lol! Bye for now x

[cofdrop-UK in reply to Keeps-smiling]

I live in Leeds - will pm.

cx

[battytroll in reply to Keeps-smiling]

My husband has regular appointments at pinderfields respiratory clinic. They are really good and help co ordinate all medical and support staff. Depending and also looking at you attending Dewsbury u live right side of leeds to ask asthma nurse at docs for a referral to this clinic. Nurse can and has authority to refer also we have dedicated copd team in wakefield/dewsbury area which you can self refer and they will come and assess at home then place referrals for you where needed hope this helps. If you need any more advice or actual contact numbers please contact me

[Keeps-smiling in reply to battytroll]

Hello, many thanks for that, will keep that in mind when and if I get into see the doctor next wk, infact the more I think about it your suggestion sounds more appealing

[Hidden in reply to cofdrop-UK]

Sometimes being asertive they refuse to treat you docs really going down hill.

[Hidden in reply to Keeps-smiling]

I don't find them very helpful they wish I would go away

[Hollyhockhattie in reply to Hidden]

Thank you for sharing this information TAD. Holly.x

[cofdrop-UK]

Agree with Tad - would also add in bronchiectasis the amount, possibly a nasty taste and if you feel unwell, especially with a high temp.

I wouldn't be unduly concerned the GP has given you different abs to the ones you had in hospital. Presumably they did a sputum test in 5* and the ab given would be the one which the bugs you grew would have been sensitive to. You may well not grow the same bug next time. Best if possible to get a sputum sample down to the surgery when an infection starts if possible and then start on the abs. The advantage being; if the bugs when cultured are not sensitive to the ab you are taking, both you and your doc will know which ab you need; you and your medics will be able to see if there is a pattern to your infections.

Both Augmentin and Clarith are good abs, providing the bugs you grow are sensitive to them. I wouldn't have thought you would take them together but you would need to check if he/she does and their reasoning for this decision.

Good luck

love cx

[Hollyhockhattie in reply to cofdrop-UK]

Bless you c. Holly.x

[suspan]

Hi

This is typical, I have bronchiectasis and I was left to 'work' it out for myself. There are some good websites but how do you know if that's what your experiencing now?

I have asthma as well and I have to self administer steroids-if Im coughing so much that its getting hard to stop especially broken sleep at night, if im starting to get bubbly sounds on chest, if I start bringing up stuff. Ive also noticed I start to get a burning sensation in my right side that denotes trouble. I also start feeling rough tired and thirsty. Any or all of these symptoms are usually a sign of an impending infection (which is very often just lately)

If that's any help? Maybe keep a diary? You could see if theres a pattern.

Keep smiling

[Hollyhockhattie in reply to suspan]

Thank you for your reply. When I was in hospital I was started on steroids at 40mg daily but the respiratory team decided to wean me me off saying I didn't need them. My GP has put me back on them with no explanation at all. Saying he is the expert. Clearly not because it took him two years to decide to listen to and send me to hospital when I insisted because i could no longer even utter a sentence without needing to get my breath back, and the depression he kept dismissing me with was a symptom of what I was experiencing! I have no trust in the GP and as I'm newly diagnosed and have spent two weeks in hospital and now wondering what happened in the last four weeks I can see from everyones very helpful posts all the symptoms I've had for over a year and increasing in intensity. I've learned more and experienced more TLC than I've ever had.I remember one night coughing so much that my eyes were streaming and I was wretching.My pulse was racing and I didn't have enough strength to get upstairs . I was so breathless and I phoned my son and in a way I understand when he said ' mum , if you were that ill they would have had you in hospital by now! No one understands the way you people do. Thanks to you and all of you . I've gone off topic now but I am grateful to everyone because I'm not crazy and I was very unwell. Holly.x

[cofdrop-UK in reply to Hollyhockhattie]

If I were you I would ditch the arrogant GP. He is clearly not an expert in bronchietasis or he would be a respiratory consultant. You have no trust in him (unsurprisingly) - get rid!

love cx

[stone-UK]

Hi

Have read of the following post by a member,

bronchiectasishelp.org.uk./...

Page 9--10

[Hollyhockhattie in reply to stone-UK]

Hello. I have just read this entire booklet. Thank you very much. Holly.

[stone-UK in reply to Hollyhockhattie]

Hi it was designed by a fellow member to be more informative, for likewise people.

I can not recall the persons name, glad it as been of some use.

[peege in reply to stone-UK]

that's really helpful, thank you from me too

[Bliss2 in reply to stone-UK]

Thank you stone it was very interesting I Bookmark it so I can read it a gain lol xx

[peege]

This sounds like a call to BLF helpline for advice on what to do re unhelpfull GP. At least he/she gave you a rescue pack and also best treatment for managing bronchiectasis. I've been told if I have it (I hopefully find out tomorrow) then the treatment will be to take Azithromycin as a prophylactic.

For my last 3 infections I had Azithromycin and it was absolutely fantastic.

If it is any help, in the past I've been given Augumentin 1st & when that didn't work given Clarithromycin. Incidently, I wont ever be taking Augumentin again as it wreaked havoc on my sensitive stomach & I ended up in A&E, completely dehydrated from vomitting nearly non stop for 24 hours & in a lot of pain. Beware if you have a dodgy tum. Clarith is similar for me too.

Call the helpline 03000 030 555. Good luck peeg

[Hollyhockhattie in reply to peege]

Hello Peeg. Good luck for tomorrow. I shall ask about Azithromycin when I have my follow up with the consultant on the 11th. The GP seems to want to do things his way and isn't going to listen but i'm considering changing. Will ask if there are any who have an interest in the lungs when i'm at the outpatient clinic. I will call the helpline tomorrow thanks, also going to my first breathe easy session on Wednesday. Holly x

[peege in reply to Hollyhockhattie]

Hiya, I've been away helping a friends sick father in Wiltshire & there's no internet. Just having a catch up.

ooo, good luck on Wednesday, I hope you enjoy it. I'll be going to my nearest on the 3rd Thursday of the month. In the meantime, my lovely PR physio Helen has emailed to ask if I'd like to join the cardio class near me as they do similar exercises to PR & that she can refer me. Nice to be thought of (especially after the post about families not helping out much)

Yes, change your GP (he/she sounds like a w......). I wont see my consultant because he a total one. (Long boring story) I saw one of his registrars last time & she sorted a CT scan for a diagnosis immediately. Results tomo....... (what if they say there's nothing wrong with me, eek!)

xxx

[Huffnpuffer]

Hi Holly ! I too have bronciectasis, and asthma, and like you was unable to garner much help or information from my GP. Thank goodness for this site and all the marvellous people here.

These are my warning signs,

Nasty taste in my mouth, heavily coated tongue, and unable to bear the taste of tea... and I love my cuppa, lol.

Coughing more than usual, with increased sputum, not neccessarily coloured at first, and sort of hot ache between my shoulder blades.

And very very tired.

Good luck with your visit to the consultant, and take a list of questions you want to ask with you, as we all know how easy it is to forget things when we are there.

Do keep posting here, we can all help each other in so many ways

Very best wishes to you,

Huff

[alanjudy]

Hi Holly

I have bronchiectasis.You need to take your antibiotics as soon as you feel unwell and not when you let it get hold. My consultant told me it doesn't matter what order you take the antibiotics. Your GP probably changed the antibiotics as those are cheaper and their drug budget was probably overspent! Cynical but true.

Azythromycin is no longer recommended if you are taking ant depressants and some other drugs. The computer blocks my GP from prescribing them - the consultant has to.

Judith