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Antibiotics prescribed as a preventative...??

CandiR profile image
102 Replies

Hi lovely lung people.....just wondered if any of you are familiar with being prescribed Doxycycline/Azithromycin BEFORE actually I'll ??? (I'm the lady who has all the symptoms of Bronchiectasis but negative CT scan and a history of recurrent Strep Pneumoniae and H influenzae infections)

I'm usually given the meds once poorly, but now into my fourth year my specialist has given me the antibiotics to start taking as a preventative medication once into the winter months.

Anyone else do this?? Thank you in Advance! 😊😊

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Damon1864 profile image
Damon1864Volunteer

Hii have antibiotics and steroids but they are my rescue pack.

😊 Bernadette xx

CandiR profile image
CandiR in reply to Damon1864

Thank you Damon1864....yes that's what I was expecting to have, but think I'm supposed to start before I get bad! Never heard of this before so was curious 😊

Yes the specialist is following the usual prophylactic treatment of bronchiectasis. This is to attempt to head off an exacerbation.Many people take azith three times each week on a permanent basis and others of us nebulise antibiotic. Even though your ct was negative for bronch I think that it is wise of your specialist to do this as every infection leads to further lung damage. I hope that helped.

sassy59 profile image
sassy59 in reply to

Excellent reply littlepom. Xxxx

in reply to sassy59

Thank you sassy.

CandiR profile image
CandiR in reply to

Thank you Littlepom, that's great help! I used to take Azithromycin for three months but that was once I'd got really bad, this time they want me starting before I'm even poorly, was curious to see who else did this 😊

O2Trees profile image
O2Trees in reply to

Hi LP - a question - since people seem to be saying that azith stops working after around five years, do you think a way round this would be to alternate nebbing a different AB with taking the 3xweek azith?

in reply to O2Trees

The answer to that is I don’t know. Obviously the nebbed antibiotic is designed to target directly into the lungs whereas the azith goes through the system. As azith does not combat the dreaded pseudomonas but is good for other bugs and nebbed abs are generally those effective against pseudo it might be sensible to have both together - except on the grounds of cost. Similarly, there is no reason why, logically your suggestion shouldn’t help. I know that some people only take azith in the winter. It seems more effective against the opportunist bacteria than against those already colonised. But that is only my subjective, observational view. Our bronch specialists seem to try various approaches because really, nobody knows.

O2Trees profile image
O2Trees in reply to

Im going to suggest it to the Brompton people when i finally get there (appointment rescheduled for 11th Jan - so much for my secretary intervention!).

I got second bout of pneumonia this year four weeks after stopping the azith Id been given after first bout. And thought that a bit of a coincidence. So now I take it but would like to have some alternative.

in reply to O2Trees

Good luck when you finally get there. I don’t know where you live but Liverpool, Newcastle and Birmingham all have centres which are at the fore front of treatment and research into lung conditions but they aren’t very good at blowing there own trumpets.

O2Trees profile image
O2Trees in reply to

Im in Kent so Brompton the most obvious for me. My consultant here was going to send my details to be discussed by the multidisciplinary team at Guys but I said Id rather do the CT in London and see them personally and preferred the brompton. He was fine about that.

in reply to O2Trees

I hope that they have some new suggestions for you. Please keep us up to date.

O2Trees profile image
O2Trees in reply to

Thanks, I will :)

sassy59 profile image
sassy59

Yes CandiR, Pete takes Azithromycin 3 times a week as a preventative measure. They do help. Xxx

CandiR profile image
CandiR in reply to sassy59

Ah.....thank you sassy59, that's a great help, that's pretty much the same as what I've been told to do then except I preferred Doxy , thanks! 😊

I take azithromycin too...Mon Wed and Fri. Has kept exacerbations at bay for me over the past couple of years. 😀

CandiR profile image
CandiR in reply to

Thank you Annastatia, do you do this year round? (If you don't mind me asking) I'm supposed to be doing this for 6 months but suppose my problem was I don't really know when to start 😊 (Specialist hard to get hold of unfortunately for me!)

in reply to CandiR

Hi.....yes I take it constantly 3 times a week even when I'm taking amoxicillin as per consultants instruction. I've taken it over 2 years.

You will find there are different opinions about taking amoxicillin as well as the azithromycin.....some say they shouldn't be taken together but I just follow the advice given and have no problem. All the best CandiR. 😄😄💐

CandiR profile image
CandiR in reply to

Thank you Annastatia! X

Hacienda profile image
Hacienda

Been taking Azith., for over two years, Mon, Wed ,Fri. Yes, they do work well for me most of the time, taken along with other meds, Azithromycin is the Best AB. Keep Well as you can. xxxx

CandiR profile image
CandiR in reply to Hacienda

Thank you Hacienda, that was the routine I was expecting, mines slightly different, also it feels odd taking antibiotics before I'm actually really poorly 😯 😊

Hacienda profile image
Hacienda in reply to CandiR

It was because I had two Exacerbations in succession, and as I am waiting for Lung Transplant, it is a Preventative from infections, that's why I know they work for me. Best Wishes Hun. xxxx

CandiR profile image
CandiR in reply to Hacienda

Well wishing you all the very best and stay as well as you can be Hacienda 😊Xx

peege profile image
peege

It's purely as a preventive/prophylactic dose to help us stay infection free. If you should get an infection the preventive dose ceases whilst you take another ab. Hope this helps. I'll be starting the winter regime soon - last year I didn't and was full of infection from Christmas to after Easter. Ended up taking more abs than I would have on the 3 x weekly grrrr, not to mention the loss of 4 months of living a normal (normal?) life.

Our immune systems aren't great so a little extra help is necessary while vulnerable during winter & changeable months. I shall be upping the probiotics through the winter too. Good luck, P

PS if you normally have a rescue pack then you'd better speak to GP to have a different one to the doxy. 😃

CandiR profile image
CandiR in reply to peege

That's great thank you Peege! That's what I couldn't work out! They haven't even given me a different antibiotic to take if I did get an infection, I did not know that so thank you!

You sound like you've had very similar goings on as me! I've had three years of being horrendously poorly with recurrent infections, just one after the other for around 6 months (let's be honest, it doesn't really 'go away' does it)

I start around now and get 'better' around March (I'm actually luckily late this year because of the warm weather I presume!)

.I don't have a life at all during those months, so from what you've said I really ought to be starting right now! Nip it in the bud eh!

Oh and re the Probiotics thing....If I'd have known about them 5 years ago I probably wouldn't have contracted C.Diff after iv antibiotics, thank god I know now!

Thank you for your advice, really appreciated! 😊

peege profile image
peege in reply to CandiR

ooo, I do sympathise. Don't be disheartened, my woes began seriously in Feb 2009 with that 1st pleurisy & pneumonia. It took until 2013 (learning so much from dear members here) to get some kind of life back. It took that long for endless infections, several pneumonia, pleurisy again, countless antibiotics , referral to hospital consultant etc. Basically, when seeing a different GP every time I went with a new infection & none of them joined the dots & I was too ill to ask wtf. One ex army GP realised It was more than asthma & had to meet with colleagues for advice. At least he sent me for investigations in to aspergillosis & bronchiecstasies.

Once meds were sorted and I rebuilt my immune system life became manageable & I had lots of fun & adventures again 💃🏻

End of 2014 I moved from London & got even better - until last winter, hence commencing preventative abs soon (I'm yet to have the discussion with new -ish GP but I think he's on board. He's always been reluctant to supply rescue abs although he sent through rescue Prednisolone. Some are willing, some aren't. As long as you can get in to see GP as soon as you've an infection it's okay (apart from weekends & bank hols of course 😭). I always insist because I learnt the hard way.

Just learn as much as you can - as you are doing 👍. P

BTW Azithromycin was the ab that finally helped, a three month course at 500mgs. The preventive dose is a 250mg tablet just on 3 days per week. Amoxicillin in my opinion is utter rubbish, it has never ever worked but unfortunately it's always GPs 1st offering - unless you're tough enough to refuse & insist on a better one 💪💪

O2Trees profile image
O2Trees in reply to peege

Morning P - have you tried Augmentin (amoxicyllin and clavulinic acid)? The clav acid makes the AB work for folks who dont find amox on its own effective.

Love to you xxx

peege profile image
peege in reply to O2Trees

YES! I don't mind that one J.

Are you better and able to keep the RBH appt? 😘

O2Trees profile image
O2Trees in reply to peege

No that's gone - I phoned the consultant (secretary) and he agreed that since its a first visit the extensive tests they will do would be distorted by my having a virus. So annoying timing and despite his secretary asking for a 3 week later replacement, they've sent me one for January 11, which Im most likely bound to have to cancel as it will be too cold.

Never mind, Im well now, dodged the bullet with just a slightly bonkers pred schedule of 30mg first day, then straightaway daily reduction of 20,15, 10,5 and today 2mg. My GP would never have approved but it was an experiment and it has worked well.

Have a lovely evening xxx :) :)

CandiR profile image
CandiR in reply to peege

Woah sounds verrry similar, unfortunately! I agree, amoxicillin doesn't work on our problems, rubbish! Quite scary that Doxycycline seems to be the only one that works for me apart from Azithromycin which unfortunately didn't suit me (worked though!) just made me feel like I was going to colapse...like intense weakness!? Strange.

Think living in polluted places just aggravate our issues don't they...London especially I guess! I'm in York and that's bad enough! 😊

santisuk profile image
santisuk in reply to peege

Hi Peege, re your comment "If you should get an infection the preventive dose ceases whilst you take another ab". My comment - hold yer horses; not necessarily!

I'm a thrice a week prophylactic azith year-round non-CF bronchX sufferer. A local Thai pulmonologist (I'm a Brit expat in rural Thailand) helps me manage my exacerbations. Historically my exacerbations had been quite quickly dismissed by either increasing the azith dose to daily or, if pneumonia-type bugs were suspected, by replacing prophylactic azith with 14 days of Levafloxacin. That moved to 3x azith + levafloxacin (or more recently 3x azith + amoxacyllin/clavulanic) when I had an exacerbation that re-emerged after 14 day doses had seemingly successfully dispatched the bug(s).

I return to the UK regularly and privately consult with the Papworth Hospital lung defence team, which means that the profile of my infections and the meds I have been using are monitored in arrears 6 monthly (now anually) by a bronchiectasis specialist and an immunologist in their lung team; my lung performance is tested with all the usual tests, scans and bloods by Papworth* . My lung performance has improved notably over the last 18 months (even though it was in this period that a couple of infections re-emerged and needed a tweak as described). The Papworth team have not raised any concerns over the combination approach of prophylactic azith being continued + specific bug targeting antibi.

Just saying. Not saying that this approach works better - it's very difficult to generalise from the specific. Getting something that works for each individual seems to be all about trying things, trial and error, smoke and mirrors and a little bit of intuition at times from the specialists! Of course the sputum tests work well in guiding the specific targeting antibi, but in my case my sputum had hitherto not shown results. At my last review Papworth asked me to keep trying to get a result and make sure the sample was cultured for 6 days. After two attempts during which the Thai labs ignored requests by my local requisitioning pulmo and one other doctor to 'cook it some more' - than the (British Thoracic Society standard) guideline 2 days I finally got my pulmo to grab the lab management by the throat (not literally) and do it a la carte. Result - success. Result - pseudomonas auringosa. Oh Lord, but that's another story! Upwards and onwards!

*Thailand is light years behind the UK in application of latest lung management techniques except in a few of its international hospitals where I still find a significantly lesser understanding. I don't criticise this - they don't get the kind of case load that generates experience in this relatively uncommon condition.

CandiR profile image
CandiR in reply to santisuk

I realise this wasn't for me as such but had a look anyway and made a very interesting read! You've even managed to grow a bacteria I've never heard of! And I thought I was clever growing two different ones 😉

santisuk profile image
santisuk in reply to CandiR

Don't worry - I did have responding to you in mind as the OP CandiR, when confirming that I am on prophylactic azith and it seems to work well for me (by implication of the improving performance comment).

By all accounts you don't want to pick up pseudomonas aeruginosa which is well known to us avid researching bronchX sufferers (and obviously to those contracting it). Bit of a black widow bug - woops, broken all rules re gender and race stereotyping!

The "British Thoracic Society guidelines on non-CF (cystic fibrosis) bronchiectasis" published in 2010 - reportedly in process of update - states

"Patients chronically colonised with P. aeruginosa have increased hospital admissions, worse quality of life and may have an accelerated decline in FEV1". I need to beat a hot path to my Papworth consultants to see if there is any path to minimising the risk of colonisation* - meanwhile I'll grind even harder on the basics of lung management - lung clearance/excercise/anti inflam diet/avoiding risk situations. Thinking of becoming a hermit! (joke).

* Suspect I am not yet colonised. The p. a. bug felt quite different to those of previous exacerbations - characterised almost entirely by loss of temperature control and not much else. Overheating and sweating followed by oversensitivity to fans and aircon, but no fevers and no bed-drenching nightsweats. Not the usual daily episodes of tiredness/fatigue. No increased coughing or significantly increased sputum production. No reduction in breathing performance. No increase in dyspnea. Quite tolerable really, carried on with life and gone in 14 days. Oh - forgot - feeling of liver-toxicity (at least that's what I assume liver toxicity would feel like) for the first hour of awakening was a shared and worse feature (usually half an hourand lighter weight) of this last reportedly horrid bug. Bl**dy local pulmo didn't report the bug until day 14 of his/my antibi programme but the 3 x azith + levafloxacin has seemed to kill it (famous last words). I reckon I should give him some UK training in bronchX lung management - he always says I know more than him but I stick around as he seems to have intuition about which antibi to go for and he's an experienced listener of lungs and reader of X-rays which protects me from pneumonia and pleurisy. That and the fact it costs about US 5$ equivalent to see him and US 10$ for an X-Ray and interpretation. The guy looked non-plussed/curious when I reacted to the historic naming of Steve's first-identified-bug-in-years ceremony with an "oh $h*t - that's a bu$$er" and I don't think he understood when I said that I should have been switching to cyprofloxacin - I don't think he knows as much as I thought he knew!!!

CandiR profile image
CandiR in reply to santisuk

Woah , that some awful 'stuff' you've been through Santisuk, how on earth does someone pick up PA anyway!? Presume it's not easily picked up by relatively fit and heathy individuals? Becoming a hermit would actually work though if you run out of options!

My GPs never talks to me properly about the possible colonisation of the bugs I regularly grow, H.Influenzae and Strep Pneumoniae (I just get the 'common' ones, nothing fancy for me) How do you know if any bug is colonised!? ....thanks!

santisuk profile image
santisuk in reply to CandiR

Hi CandiR. The PA bacteria is everywhere, particularly in hospitals. Google it for more info - Wiki's a good start but don't get too phased by the reference of it being potentially fatal (lots of ordinary things are that and particularly if you are otherwise of notably weak health).

How can you / can you prevent or minimise risks of colonisation? Dunno - I'm about to write to my Papworth ladies (two consultant Dr Helen's) to find out and will probably pose the question as a new topic on Health Unlocked. Possible I guess to change from my prophylactic 3 x per week azithromycin to another one that targets PA. I have always been conscious of the desire to stave off this bug so have read numerous prior postings on the topic and the British Thoracic Society guidelines I referred to (lots of guidance on there about the appropriate drugs, but I'll get a more up to date view form the Helens). While the postings confirm that your infections get less manageable once colonised it is not without hope that you can get yourself decolonised with a programme of meds.

First priority for me now though is to get myself up to our Bangkok condo to have my osteoarthritic hips reviewed by a good orthopaedic team. Have been managing these through to eventual replacement since one broke down on me 2 years ago and the other has left me crawling around the house for a week! Sounds dramatic but its normally totally manageable with regular excercise and a drug to head off any twinges and I even still run a group of social drinkers and runners out here ('Hash House Harriers') setting a 7km trail in paper and flour for them most months. It's that the keeps me positive and pushing forward; even more than that, a lovely extended Thai family with my first child (now 8 and born when I was 58), an adopted 22 year old at local university and 2 teenage nieces-in-law that we are increasingly looking after following a relationship breakdown on that side of the family tree.

in reply to CandiR

Azithromycin and doxicyclin target basically the same bacteria but in different ways. Doxicyclin is a broad spectrum antibiotic of the tetracyclin group whereas azithromycin is a macrolide. They are effective against haemphyllus influenzae and staphyllococcus mainly. Azithromycin also targets gram negative bacteria. They are not effective against the bronchs friend and companion, pseudomonas. Sometimes it can take 9 weeks for a bacteria to grow. This is why many samples come back clear from the labs because standard protocol means that they do not cook them long enough unless the consultant insists upon it.It is important that somehow the bacteria is isolated so that the right ab can be taken. Otherwise you may as well be eating smarties.

angie105 profile image
angie105 in reply to santisuk

So is the united States behind and it is nuts.The drs here like spending maybe five minutes then off they go

Sharp5Flat13 profile image
Sharp5Flat13 in reply to santisuk

Very enlightening, Santisuk. Thank you!

Hacienda profile image
Hacienda

Just to add...if I was to have an Infection, then I would start on my Rescue Meds, Prednisalone & Amoxiclav, Leaving the Arith., for 7 days whilst on the rescue AB. xxx

CandiR profile image
CandiR in reply to Hacienda

That's a great help thank you....I've just mentioned to another member on here that I didn't actually know that! I've only been given the long term antibiotics and no rescue Meds, I think perhaps the GP has rushed when reading my specialists notes, as I'm sure we mentioned rescue meds as well. Thanks again 👍Xx

poeticlady profile image
poeticlady

Yes I take azithormyin 250mg daily. It has really helped with flareups.and mucus.

CandiR profile image
CandiR in reply to poeticlady

I wish I could take Azithromycin, it worked great (as you already know yourself!) But I had extreme weakness as a side effect, think it was affecting my liver, whereas Doxycycline seems to suit me.....but obviously the worry now is resistance (scares me a bit) 😊

santisuk profile image
santisuk in reply to CandiR

Other very effective IME standby broad spectrum drugs (Brits call them rescue packs, but dunno whether our US/Aus etc sufferers use that term) regularly used by bronchX patients are available when and if you face resistance to Doxy. Amoxycillin is a cheap and ancient one that public health services usually start you on. 5 years ago an excellent Thai pulmo in Chiang Mai (best in the country IMO but unfortunately 1,000 km from where I live) treated me for emerging pneumonia before I was bronchX diagnosed, actually listened when I mentioned in passing that Amox seemed to be taking longer and longer. So that got me onto one of my still standbys, amoxycillin/clavulanic acid (brand names 'Augmentin' and 'Amoxyclav' in northern Europe and probably elsewhere). Levafloxacin (brand names - many but 'Cravit' and 'Levaquin' widely available in UK and US respectively) is another, particularly good at targeting pneumonia-type bugs. Both are more expensive than standard amoxycillin and doxycycline, so you may have to press for it in public health systems.

There are loads of other and high-tec antibis used in hospitals - my Papworth bronchX consultant early on advised me not to get too hung up about resilience. I do still wait until I am absolutely sure this is a bacterial infection before taking them nonetheless. Colouring up of sputum and slight off-colour feeling with no other symptoms is not a reason to immediately reach for the rescue pack IME (there is authoritative - British Thoracic Society guidleines - support for that, but many people seem to advocate that bronchX sufferers should reach out at first sight, so maybe I should shut up!)

As always only take under medical advice and read the instructions carefully in the pack and/or on the internet. Doctors, and to a lesser extent pharmacists, don't cover all the points you really should be aware of when using a drug - eg other drugs you should avoid (sometime standard stuff you would not think about like antacids) are rarely highlighted at prescribing stage.

AngieB72 profile image
AngieB72

Hi

I take Azithromycin 3 times a week as a prophylactic antibiotic, I have done for over a year and have had less chest infections. If I do get one (as we all do) I have my rescue pack of amoxicillin which I take as well as the prophylactic ones for the prescribed week.

Dread to think how many more chest infections I would have had without them and the damage that would have been done !

CandiR profile image
CandiR in reply to AngieB72

Thank you for that AngieB72, that's what was happening to me, infection after infection but doctors weren't managing it very well, they'd wait until I was in A&E again then I'd get antibiotics, finally got a specialist but not great care to be honest! 😊

shouty profile image
shouty

Me too staying on Doxy 3x week over winter

CandiR profile image
CandiR in reply to shouty

Thanks Shouty, so far your the only one who's on Doxy not Azithromycin like me, do you mind me asking why!? I asked for doxy because I like them better than Azithromycin you see, Azithromycin gave me side effects (thanks again) 😊

shouty profile image
shouty in reply to CandiR

Never been on Azi Candi , had Doxy when 1st diagnosed with Haemophilis last year after repeated chest infections ( sputum sample showed it is sensitive to that antibiotic ) Never found out where I'd got the bug from after tests and Ct scan showed mild Bronchiectasis. I'd just thought I'd had flu or Pleurisy but GP send me for chest Xray which showed nodules thankfully not Cancer. Was a nurse for years up till 10 yrs ago and had never heard of Haemophilis before despite working on a Respiratory ward !

shouty profile image
shouty in reply to shouty

Consultant also prescribed Co-Amoxiclav ( Augmentin) as rescue pack antibiotic

Volvo1951 profile image
Volvo1951

Yes i was prescribed the same antibiotics to keep at home in case the symptoms started in the winter, but once I had taken them that was it the doc left the surgery and I was given no more even though I keep asking ?????

CandiR profile image
CandiR in reply to Volvo1951

Ah well that was exactly what was happening to me Volvo1951.....not good is it! It too me two years to get a respiratory specialist, before that I was like you....I get two weeks of antibiotics when I had infection (with positive sputum Samples) then GP would just leave me to get ill again for the next pack.....that cycle would repeat for 6 months of the year, so exhausting .I didn't have a rescue packs.

Do you have a specialist yet Volvo1951? I presumed not! 😊

Volvo1951 profile image
Volvo1951 in reply to CandiR

Yes a dr Dimov been swing him now for 4 years saw him last week like talking to a brick wall, he is going to send me for a scan then if all clear he is going to take me off his books. For once I was the only white person in the clinic. A friend of mine same age same condition has been refused his flu jab as there is no more vaccine left due to the hi influx of immigrants. I am not racist but surely our own elderly should come first ????

peter06 profile image
peter06 in reply to Volvo1951

You are in the front of the queue for vacination, you may find that the vaccines are being delivered in batches now due to short supply, in any event your locak chemist should be able to give you one, costs about £7

My daughter has been on prophylactic Zith three times a week for the last 7 years, it’s common in cf. Some of the idea behind azithromycin in particular is that in addition to its antibiotic action it’s been shown to have an anti-inflammatory effect in the lungs, so may also reduce the need for steroids.

CandiR profile image
CandiR in reply to

Thank you CharlieG, It's frustrating I can't take Azithromycin, gave me side effects that I couldn't handle, such a shame because like you says they help with the inflammatory and not sure Doxycycline does the same!? 😊

danno4749 profile image
danno4749

yes I've been on azithromycin for about 2 years and they are a big help.

CandiR profile image
CandiR in reply to danno4749

Thanks Danno4749.....do you mean throughout the whole year!? or part of the year? 😊

danno4749 profile image
danno4749 in reply to CandiR

all year like my consultant said.

MoyB profile image
MoyB

My consultant has prescribed Doxycycline for me from November to April as a preventative measure as he said I'm still having too many infections. Am looking forward to an infection free winter - I hope! xxMoy

CandiR profile image
CandiR in reply to MoyB

Snap MoyB! Good to hear! I also have not had an infection free year yet so here's hoping it works! Have you been given rescue antibiotics too or just the Doxycycline?? 😊

MoyB profile image
MoyB in reply to CandiR

I have Amoxicillin and Prednisolone on standby and the consultant told the GP to alternate these with another anibiotic (forgotten the name) for exacerbations. I'm looking forward to starting the Doxy as I always feel so much better on them. Hope all goes well for you. xx Moy

3girlsmama profile image
3girlsmama

Hi CandiR, sounds like we have a similar history. I have regular recurrent chest infections which only used to respond to antibiotics and steroids. Then had 2 hospital admissions for pneumonia (one aided by swine flu). They thought I had Bronchiectasis but the CT showed only mild thickening of the walls. However after another year of severe infections I am now on constant antibiotics (co-trimoxazole) and then change to Azithromycin or Levothyroxin if I get any symptoms at all (I keep a complete rescue pack at all times as I go down hill very quickly). I wasn’t able to tolerate doxycycline but was effective at clearing infections. Hope this helps, i found it all very daunting at the beginning (3 years ago).

CandiR profile image
CandiR in reply to 3girlsmama

Yes sounds very very similar to my goings on 3girlsmama! I know exactly what you mean about 'going down hill very fast' It's exhausting isn't it!

Don't know about you? but once my CT scan didn't show definite Bronchiectasis, I wasn't given any further tests or referred further and told I may never know what's wrong! Even though I have all the symptoms and positive sputum sample results, I asked if this could be the early stages of Bronchiectasis and the specialist just couldn't answer , it's soul destroying.

Do you have a good specialist then? And I'm assuming , like me, you have yet to receive a proper diagnosis?? Thank you for your valuable input! 😊

3girlsmama profile image
3girlsmama in reply to CandiR

Sadly my experience is too similar - my consultant, who is very nice and competent, has said I would in the past have just been known as a ‘weak chested person’ and having done all the tests has now resolved for us just to manage the situation. This is highly frustrating as I used to be a nurse and want to know the whys! I regularly have to visit the ‘respiratory hot clinic’ at the hospital if I have an infection and all the consultants I’ve seen on seeing the CT have agreed it’s not Bronchiectasis but they are treating me as though I have it as symptomatically I’m very similar. I’m now having neuro tests done as my second hospital admission affected my mobility drastically leaving me pretty much housebound (not fun with a young family). Until now I’ve just been told it was on the back of the pneumonia but with muscle spasms, lots of pain and mobility issues I’m hoping that they may be able to find out what’s going on and maybe it’ll be linked to all the lung problems. Do keep pushing for answers though. I have to say I’ve had far fewer infections on the prophylactic antibiotics and it has improved life from that point of view x

CandiR profile image
CandiR in reply to 3girlsmama

So sorry to hear you've had the same battle, you've obviously had it tough, the mobility issues sound dreadful (I too get awful pains all over especially in legs and shoulders) and especially when I have an infection is brewing, but sounds like youve had it really bad....I've never ended up with mobility issues, so sorry to hear that.

It's actually strangely reassuring though, to hear of another in the similar situation! And I also have a young child to look after, thank goodness I only had the one, sounds like you have more than one....don't know how you cope!! It's a battle to say the least!

I'll start my antibiotics today, even though I've not got an infection YET! Feels odd taking them when not poorly yet, but will listen to the GP and do as I'm told! Xx

3girlsmama profile image
3girlsmama in reply to CandiR

Yes, you’d never wish these things on anyone but when you hear you’re not the only one it does help in some ways. I’ve got 3 lovely but pretty lively girls - they def help get me out of bed every day! But I’m very lucky to have a lot of support though.

Def a good idea to take the prophylactic antibiotics, anything to stop infections. Hope they work and you can stay well!

CandiR profile image
CandiR in reply to 3girlsmama

And you too 3girksmama 😊 X

Hi. I have just been prescribed for the winter months. I haven’t started yet (as I haven’t been up to collect the script). The pharmacist told me it will be three days a week. It will be azithromycin. I was given a choice so I looked on the Bronch website to see which one other people seemed to be using.

CandiR profile image
CandiR in reply to

Thank you for your input Rayswife, are you poorly with an infection at the moment or are you aiming to start your antibiotics while infection free?? Thanks again 😊

in reply to CandiR

I am just getting over an infection. Finished my rescue pack and steroids but this was decided at my last hospital appointment. We talked about some research that had just been published (on Bronchiectasis News). The pharmacist rang to ask which ones I wanted because the surgery had received a letter from the Consultant. I am hoping I can get through the worst months without too many infections. Hope you ind something that works for you.

CandiR profile image
CandiR in reply to

Thank you for explaining, I'll start mine today, just like to know this is common practice! sounds like there is lots of us starting long term antibiotics as a preventative opinion. Thanks 😊

mouse51 profile image
mouse51

Oh yes my GP has put these on repeat and I take them as soon as feel achest infection brewing.

CandiR profile image
CandiR in reply to mouse51

Thanks mouse51 😊

Sallyb29 profile image
Sallyb29

Hi I’ve been on antibiotics since last September I would just finish one course and I would be I’ll again. I was then was put on 6 weekly course of doxycycline there was one time I was on 2 lots of antibiotics for 6weeks there was 3 bugs growing in my lungs. As I said this has been going on for a year I asked my doctor recently if I would ever be off antibiotics and he said probably not and that they might start giving me antibiotics for 3 days a week. Hope this helps u

CandiR profile image
CandiR in reply to Sallyb29

Oh Sallyb29....that sounds like the same nightmare I've had, it's just a constant cycle of infection after infection.....exhausting isn't it!

Im going to start mine today before I get poorly.....feels weird doing it whilst 'well' but it normally happens now and lasts approx 6 months, then the cycle begins again!

This is the first time I've been told to take antibiotics before I'm ill before, sure I'll get used to it! Thanks again 😊

Sallyb29 profile image
Sallyb29 in reply to CandiR

Oh CandiR. Yes sounds weird taking them while ok. Ive just finished a 6 weeks course and feeling ill all ready. So back to the routine of putting in sputum test in being described antibiotics and starting to feel normal then back to routine again. Im worried my body will get used to antibiotics and then what will happen. Hope you stay relatively well during winter.

Pwkav1 profile image
Pwkav1

Hi CandiR, thats a very good idea actually might help you for coming winter months. Ive been on doxy for months on and off for Haemophilus Influenzae. Had a heavy infestation and ospital put me on double dose doxy then azithromycin for 3 months. Took it for a week but in meantime sputum came back with light growth so back on it another week then back on azythromycin. Hopefully this time its clear. Ive never had a clear sputum tho not for least 2 yrs. Its a lot of messing about when its constant. For yourself it would be a kind of protection for winter. Hope it helps you a lot. Karen Xxx

CandiR profile image
CandiR in reply to Pwkav1

Thank you Pwkav1.....poor you, sounds like my situation, my sputum samples always show Haemolphilus Influenzae and Strep Pneumoniae , just frustrating that my CT scan only showed minor collapse on one lung, so I haven't recieved a 'proper diagnoses'

But yes, I agree, I'll start taking the Doxy from today.....sure prevention is better than a cure! 😊

Yes my husband has been taking zithro 3x a week for a couple yrs. he takes prednisone when he feels an exacerbation coming on. But does take maintenance abs

CandiR profile image
CandiR in reply to

Thank you Apeter7874.....that's worth remembering, so basically his 'rescue meds' are prednisone if I've read that correctly. Steroids did actually shift one of my worst infections once so that would be a good option to mention to my GP/specialist. Thanks! 😊

helenlw7 profile image
helenlw7

I took doxy for about three years until I questioned its use because although I was getting less chest infections I was getting two or three every winter. He changed to azithromycin two years ago and have only had two infections - the second one when he suggested I had a break during the summer months because ‘people don’t get chest infections then.’ I did, and quite a bad one!

CandiR profile image
CandiR in reply to helenlw7

Thank you for that Helenw7, what dosage were you taking? Both Doxy and Azithromycin (if you don't mind me asking)

I've been told to start (before I get an infection) two Doxy per day for two weeks....then a four week break....then one a day for two weeks...then a four week break....etc etc for a total of six months 😊

helenlw7 profile image
helenlw7 in reply to CandiR

I also took 2 doxy on the first day and then every other day. I only had breaks from the foxy when I actually had an infection and then I had different antibiotics. With the Azithromycin I take three a week.

CandiR profile image
CandiR in reply to helenlw7

Thank you again, I'm just wondering why I've been told to take quite big breaks inbetween, seems to me that I'm the minority, everybody I've asked do not take four week breaks, I'll speak to my GP and double check that this is the best dose for me!

Sharp5Flat13 profile image
Sharp5Flat13

How are they with vaccines?

CandiR profile image
CandiR in reply to Sharp5Flat13

Hi there Sharp5flat13....sorry for the delay! I've had a pneumonia jab a few months ago and need the hib vaccination, wasn't keen on the fact that I have to have a children's hib vaccination which happens to be combined with tetanus and polio (or something) GP surgery told me there is not hib vaccine on its own!.? 😯

Sharp5Flat13 profile image
Sharp5Flat13 in reply to CandiR

Just renewed my flu jab. I wonder that since some flu viruses mutate so rapidly, how much good it does.

CandiR profile image
CandiR in reply to Sharp5Flat13

I always wondered that also, to the point where I haven't had it for 4 years (don't recommend obviously, was my choice)

(obviously had pneumonia jab and having hib vaccine) but seen both my parents both in 70s suffer badly for three years in a row after the flu vaccine and convinced myself it was vaccine related.

It's a controversial one!

oooodicky profile image
oooodicky

Hi I’ve taken both antibiotics and I think they’re about the best ones to take they both do a good job on your infections. Happy days.

CandiR profile image
CandiR in reply to oooodicky

Thanks oooodicky (nice user name) 😊 Don't know of anyone else who has a four week break inbetween though!? (Been told to take 2 doxy per day for two weeks then stop for four week then repeat pattern but one per day instead) 😯

Denae011 profile image
Denae011

Hi i have been given azithromicin to take 3 times per week. . And carbocysteine. I haven't got copd but I have quite severe asthma.

CandiR profile image
CandiR in reply to Denae011

Thanks Denae011, that seems to be a popular choice of antibiotic (and successful by the comments on here!) good luck 😊

oooodicky profile image
oooodicky

CandiR, sorry about my last post I miss read I’ve only taken doxycycline and not the other antibiotic hope you have got sorted out, good luck 😉

Peterhogg70 profile image
Peterhogg70

Hi yes I have just been given the same antibiotic. To take one, three times a week. Monday too Friday. Been on the for a fortnight. Still not sure if working?. Will just have too perceiver. Whisk you well.

CandiR profile image
CandiR in reply to Peterhogg70

You taking Doxy or Azithromycin Peterhogg70??

Doxy always works within a day or two with me....Azithromycin also worked very well within a week I'd say (but unfortunately I had side effects of exhaustion with these....I think my liver wasn't coping.)

Perhaps you need to see GP if you feel they're not working, would think after two weeks you should be feeling improvement? 😊

oooodicky profile image
oooodicky in reply to Peterhogg70

Peter you’re not gingers brother are you????

Peterhogg70 profile image
Peterhogg70 in reply to oooodicky

Hi oooodicky. No, do not know anyone by that name. Wish you well. And a merry chistmas.

oooodicky profile image
oooodicky in reply to Peterhogg70

Merry Christmas to you too enjoy 😉

notthemamma profile image
notthemamma

Hi there. I also have antibiotic and steroids rescue pack.

CandiR profile image
CandiR in reply to notthemamma

Thank you notthemamma, I haven't actually got a rescue pack, just been prescribed the long term antibiotics, sounds as though that's not standard procedure though, most people who have replied have rescue meds as well as the long term ones. I'll be mentioning this to my GP. 😊

DunCaan profile image
DunCaan

Hi Candi I was diagnosed with Bronchiectasis 3 years ago when I was colonised with psudamonus. Neb Azithromycin 2 times daily for six months which did clear the bug. Now on Azithromycin tabs 500mg three times a week - for life consultant says. Hope effectiveness does not drop as other post suggest. Main thing is to keep active and clear lungs when you sense build up of mucus. My hubby used to do a form of physio on me to help loosen the gunge. All the best and stay positive too.

DunCaan profile image
DunCaan

Oh and you must learn the huffing cough which is only way i can clear mucus.

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