Azithromycin

[sueysue]

Hi. I have stage 3 copd with empysema and asthma. My Gp suspects I may have bronciectasis. I have been getting alot of infections. I have not got a consultant and am not being referred to one. However my GP wants to put me on arithromycin 3 times weekly. I have a feeling only a consultant should do this. Thoughts please.

[Alberta56]

You really need to be seen by a respiratory consultant. I believe from what I have read on this site that you have the right to a second opinion. xxx

[sueysue in reply to Alberta56]

Trouble is it's about a 12month wait where I live !!

[Homely2 in reply to sueysue]

If it is a long wait then the sooner you are referred the better, or look up other hospitals and see what their wait is.

My biggest mistake with my asthma was letting my gp refer me to my local general hospital, rather than to a big teaching hospital 30 miles down the road. I am presently looked after by a consultant that specialises in sleep disorders but also dabbles in a bit of asthma.

So make them refer you to a suitable specialist. Then once referred email their appointments team and say you will take an appointment anytime, any place, then keep on following up.

[Chip_y2kuk]

My gp didn't do it, the tertiary care team did

[Hidden]

Whilst your GP is 'suspecting ' that you have bronch and you are doing nothing about it because 'you have to wait a year for an appointment' every infection you get is damaging your lungs more.It can only be diagnosed by CT scan.

GPs know nothing about bronchiectasis. You need a bronchiectasis specialist who is qualified and experienced in its treatment and management and has physios who will teach you self management.

Look for a bronch specialist at a large teaching hospital. Take the name to your GP and INSIST on a referral.

We really do have to be pro active in our own interests and vociferous in sourcing the right treatment.

[sueysue in reply to Hidden]

It's not me who is doing nothing about it. Its my doctor. I am seriously thinking of going private.Thanks for replying

[Hidden in reply to sueysue]

I'm afraid that going private will not necessarily get you what you need as many private respiratory consultants do not have the expertise of the bronch specialists in the NHS. My NHS consultant wrote the bronch.guidelines. Also, bronch needs constant monitoring and access to ongoing scans and xrays which.can be prohibitively expensive. You are entitled to the best level of care and many of the others will also tell you that we bronchs have to fight to get it.

[Dottie11 in reply to Hidden]

Great reply. I struggled with lungs and family history of bronch. Private scans and first NHS scan missed the diagnosis. Proven later when got another NHS referral who scanned diagnosed and checked old scans where missed originally. Wish I knew then what I know now. This site is excellent.

[Spacecat1 in reply to Hidden]

Email all local hospitals let them know what is going on starting with gp etc.

[Chip_y2kuk in reply to sueysue]

You don't have to go private what you have to do is demand a referral ... its true that the respiratory departments are busier since covid and there are a lot of backlogs.... but part of me also suspects your GP doesn't want you referred and the wait won't be 12 months .... my daughter waited less than 9 months to get into alder hey hospital respiratory department

I waited about 2 months to get into Liverpool royals respiratory (severe asthma clinic)

Chip

[Tryphena134 in reply to sueysue]

I did that myself before Covid and it was worth every penny.

I chose a consultant who works primarily within the local NHS. I see him regularly or have telephone consultations all on the NHS. I think he gave up private work in Covid.

He has been great. He misdiagnosed me initially and then changed it when he had the scans done.

My GPs are lovely but really don’t have that specialist knowledge you really need.

He also discussed being involved with the local hospice and sorted that referral out too. I did that last autumn and so glad I did it then as not really well enough now to travel.

[Alberta56 in reply to Hidden]

Good old Littlepom; you set us all right. Hope you are steadily getting better yourself. xxxx

[Hidden in reply to Alberta56]

Thankyou Alberta. It's a slow old business but I'm getting there. I hope that you are staying wellXX

[Alberta56 in reply to Hidden]

I. have this fantasy that I come to Stratford on Avon and there you are waiting to show me round the chapel. Not very likely at the moment I fear. It would be a major operation for me to get there, apart from anything else. xxxx

[Nula2 in reply to Hidden]

Brilliant reply Littlepom. I have taken up many of your tips and suggestions since being on this site. Always with a positive outcome 😊. Take care and hope you're soon feeling lots better 🤞xxx

[Hidden in reply to Nula2]

Thankyou Nula

[Lol1944]

Quick, grab the stuff. Been on it thrice weekly for couple of years and has been great. Only my honest opinion

[sueysue in reply to Lol1944]

Thanks x

[Chip_y2kuk in reply to sueysue]

I wouldn't just grab it, especially if your GP doesn't really know what they are doing

One of the "concerns" of azythromycin is that it prolongs the QT interval (something to do with electrical impulses in the heart) and so they made me have an ECG before I was allowed to start it ... as walking round with an irregular Qt interval isn't good but azythromycin interfering with it even more can be fatal (mine was and is normal)

But I had a rough time starting it but after a few weeks it has made a difference ( I'm now 4 months without an infection.... for the last 8 years my average has been 2-3 months between infections)

[Steve4666 in reply to Chip_y2kuk]

Glad you have had a good experience taking the azithromycin. I’ve found them to be really helpful, i was getting admitted to hospital at least every 4 or 5 times a year with chest infections, this went on for a number of years. Since taking them for the last two years, I’ve had 1 chest infection, which didn’t require any hospital treatment. I’ve caught Covid twice and got over it without problems, although this could be more to do with the vaccine. I’d definitely recommend taking azitthromycin.

[Patk1]

U need a ct scan to diagnose bronchiectasis.azithromycin is a common antibioti used as a prophylactic & anti inflammatory. I presume Yr gp is quite other ball to prescribe it.if u want to b seen by a consultant,u may need to insist

[jacic64]

I can only second what everyone else says & get yourself a respiratory clinic appointment. My respiratory team were great at getting me onto clinical trials. I'm stage 4 with severe emphysema,chronic bronchitis & mild bronchiactesis. The 3x per week azithromycin really helped me, I've only had 1 mild chest infection since being on them - I used to get at least 4 infections a year before starting azithromycin. The clinical trials team at the Royal Brompton are amazing too. I had every scan and test needed & got my results back quickly for each one.

[Danielmystar]

I've been on it for just over 5 years its worth taking it you've a long wait and as another member said the more infections you get the more your lungs deteriorate ive had no infections since I started on them tablets I myself live in lancaster uk it comes under morecambe bay area ive never had a respiratory specialist because there dosnt appear to one but my gp is great with me ive copd emphysema stage 4 and without them tablets I realy don't think I would be here today you can get take them while on waiting list im sure you will benefit by them let's know hiw it all goes xx

[B0xermad]

I have been on azithromycin for 10yrs and have bronchiectasis but it was prescribed by my consultant

[Alberta56]

I've been on Azith for 3 years with no problems, but my bronchiectasis is still relatively mild.

[Superzob]

I think there is a danger here of seeing this as a binary choice. We don’t know what knowledge the GP has of bronch, and it isn’t clear whether he is prescribing azithromycin as a prophylactic to prevent further infections, or to deal with an existing one. If he thinks you might still have an unresolved infection (through blood and sputum samples which suggest that the bacterium might respond to azithromycin), or that you might benefit from using it as a prophylactic, then that would seem a reasonable course of action as with any infection, but that doesn’t stop him/her from referring you to a consultant at the same time - in fact, s/he would be re-referring you, as you must have seen a consultant previously to get the diagnosis and your condition has changed with the infections, which is a good reason to re-refer.

[sueysue in reply to Superzob]

Was diagnosed 22 years ago with COPD and Asthma. Saw a consultant at first the referred back to Gp x

[Superzob in reply to sueysue]

Seems an awful long time - another good reason for a referral? When I see other people’s experiences on this site I realise how lucky I am to have seen my consultant and had spirometry every 9 months until recently!

[sueysue in reply to Superzob]

It's a postcode lottery I'm afraid hun x

[PaulineHM]

Hello Sueysue,

Sorry to read that you are experiencing lots of infections. Sadly that is the way for many of us.

I too have Asthma/COPD and have had crippling infections for 20 years. No regular out patient appointment either ‘unless on my respiratory knees’.

Have been on Azithromycin alternate days for about 7 years which has helped a little. However, if you saw my post on Roflumilast this week you will see it has helped enormously with no additional antibiotics needed since starting it. Only a consultant can prescribe this !

So two possible avenues for you…

A referral via your GP to your local Respiratory team for assessment perhaps ? They have access to consultant opinions at MDT meetings which can be helpful.

Referral to outpatient consultant for a specialist review and work up to get an appropriate treatment plan. You could be waiting sometime.

How is your self care/self management going ?

With this combined condition good care is vital ( yes I know it is for everyone ) because the mortality rates are higher than COPD without the Asthma component. So go get it would be my advice.

Let us know how you get on won’t you.

Go well.

Pauline

[garibaldon]

Remind me of a phone call to the surgery when I was gasping for breath . I asked the the doc if I could see a consultant . He retorted ‘ What do you think he could do for you that we (the surgery ) can’t do. I replied …’ treat me with some respect and give me some answers’ followed by a pregnant pause and a lost of tosh. I can’t remember who put the phone down first.

[lvn0619]

BC is usually diagnosed with a chest CT. The specialist would also order sputum cultures which include AFB and fungal smears to know which antibiotic is appropriate to use. Arbitrarily putting you on antibiotics without cultures opens you up for antibiotic resistance which can limit your treatment option. Until you can be seen by the specialist, ask your pulmonologist for the CT and sputum cultures. Some pulmonologists do not have advanced trading in treatment of BC patients . If you should be diagnosed with BC, please educate yourself as there are many home therapies you could do to help with exacerbations.

[TheOldBoy]

Hi, I was not being looked after by a consultant and my GP had just ‘left me to my own devices’ or kind of threw me off a cliff with my diagnosis (long story…). I got a private referral to an pulmonologist who now looks after me through the NHS. This was probably the best £160 I’ve ever spent!!! Please note I’m not knocking my GP I’m with a mega practice over 30k patients and you rarely see the same GP twice. I told my GP I wanted to see an expert for some advice on prognosis so I could do some life planning. While a GP may be the gate keeper to the consultants through the NHS, as a private consultation is at your expense they have little grounds to stand in your way. If you’re unfamiliar with the process I can copy and paste an e-mail I sent to some one else

Good luck and best wishes, Adam

[sueysue in reply to TheOldBoy]

Thankyou that would be excellent xx

[Jk1957]

I agree with all the advice given especially Littlepom who has been a power of valuable advice to me & others . However my worry would be if it’s a year before you are seen by a consultant & u are getting a lot of infections your GP may be correct in recommending Azithromycin .

This drug has made a huge difference to me & I have a bronchiectasis diagnosis for over 30 years . It was a turning point for me to bd prescribed this drug . I’m not getting as many infections at all

You need to be seen by a bronch consultant but in the meantime Azithromycin might protect your lungs

I wish you all the best .

[sueysue in reply to Jk1957]

Thankyou xx

[MoyB]

Re Azithromycin.

My resp consultant prescribed it for me. I've been on it since Christmas and this is the first year I have had NO chest infections. I usually have three or more every year.

However, Azithromycin comes with risks. It can cause vertigo and I was not put on it sooner as I was already having vertigo attacks and my consultant didn't want to make things worse. The vertigo has burned itself out (for the time being at least) and so he has prescribed it.

I have a monthly blood test to check my liver function.

I have been warned about the possibility of hearing problems and possible deafness and told to stop immediately and contact my consultant if the vertigo becomes an issue again.

My cardiologist was contacted before it was prescribed as I have paroxysmal atrial fibrillation and my consultant was only willing to prescribe it if the cardiologist agreed.

I'm not sure that it falls within the GPs remit to prescribe this drug, but if it does, please ensure that they do the necessary checks before you start taking it and afterwards.

It has worked fantastically well for me. I have my life back! I've had COVID this year and also a couple of viral infections but none of them has gone to my chest.

Re referral to consultant.

My GP tried to treat me himself and I was becoming more and more ill so I requested a referral. His face said it all! I was not going to be able to see one for a very long time, he told me. I asked for a private referral and got one within two weeks. I explained to the consultant that I only had enough insurance to cover an initial appointment and he immediately transferred me to his NHS list and arranged an x-ray and a CT scan (the best way to diagnose Bronchiectasis). Since then, he has seen me 6 monthly, and then annually since my condition improved.

Re Pulmonary Rehab

If you are not able to get a referral to a consultant, please ask your GP for details of Pulmonary Rehab as the physios who run them are very knowlegable (in my experience) and the more you learn, the more you can help yourself.

Community Respiratory Nurses

These are also extremely knowledgable and have access to consultants (even if you don't have a named one). It may be possible for them to become involved in your care. They may only work with you if you have a named consultant, but it may be worth a try.

I do hope you get the treatment and support you need. You have plenty going on with COPD and asthma and if you have Bronch as well, you need someone to look after you properly.

xx Moy

[Heaven20]

I'm lucky to have a respiratory consultant, I'm in the Midlands UK and have discussed putting me on this type of antibiotic, but before he can I had to send 3 samples to make sure there is nothing growing. This takes time and hopefully will know on my next appt. I hope you manage to find a good specialist to look after you as it is more complex than some GPS think.

[alcgb]

I think your GP is being very forward thinking which is quite unusual & something to be applauded! I have bronchiectasis & my consultant put me on Azithromycin 250mg once a day three times weekly which has since been increased to daily. Azithromycin works by stopping the growth of bacteria which cause infections so your doctor is trying to help. I would try it.

[sueysue in reply to alcgb]

Thankyou. Am going to give it a go. And ask for a referral x

[Lever]

Just saw your post. Hope you saw your pulmonologist.

They sent me to an immune specialist, who did special bloodwork. Which showed that I have an immune deficiency . My entire life since childhood, I have caught every virus going around. See if you can get them to do this for you. If your immune deficiency is bad enough, they have good treatment for it.