Long term antibiotic Therap ??

[carolg1]

Can any one help with the following, A few months ago I was put on long term antibiotic (Azthrymicin) 3 times a week as I never seemed to be well , I was taken off them after 2 months a couple of weeks ago, and low and behold I have another infection brewing so its off to docs again tomorrow, how long can you be on long term antibiotic therapy ?? xx

[pergola1]

I would be interested to hear what people have to say. I am on azithromycin since last winter. I would hate to be taken off at the moment. Husband is ill and has a low immune system - no bugs. x

[carolg1 in reply to pergola1]

lets hope someone spots the question pergola 1, I soon fell ill after stopping it though only 2 weeks off then winter weather ?? so not sure xx

[Sohara in reply to carolg1]

Hi my consultant has told me I will be on Azithromycin now for life...I had the most wonderful 8 months when I first went on to it...infection free for the first time in years...but I have had a bad infection now for the past 2 months...think its cleared up now so going to go back to the Azi next week...and keep my fingers crossed

I have read som doctors do want Azi patients to 'take a summer break' off the drug ( most probably to try to keep you not getting immune to it) but my consultant says...that I am either to be on my rescue antibiotics or my 3 times a week Azi...all the time

Love Sohara

[carolg1 in reply to Sohara]

Thanks for that Sohara stay well x

[Fanacapan9]

Hi , I've been asking to go on maintaince dosage of antibiotics as I've been having exacerbations every month/6weeks for the past year, only to be told this is what usually happens when your end stage. Anne x

[carolg1 in reply to Fanacapan9]

Anne that is a terrible response to your request it sounds like your doctor is harsh , I would like to know how you responded to that how old are you (not being cheeky) but god if my doctor would have said that to me id be worried sick, luv Carol xx

[MarieW-F]

I have been on them for almost 2.5 years. Not had a break from them yet. I know quite a few people have had 'breaks' from them but its never been suggested by my consultant.

[carolg1 in reply to MarieW-F]

Hi MarieW-F,

Thanks for that that sounds good to me, how do you feel in general with taking all the time x

Luv Carol

[MarieW-F in reply to carolg1]

I feel grand. I am aware of all the risks/side effects bit for the benefits they have given me well outweigh the risks. I am also on immunosuppressant's too so I am even more grateful for them. I really think they have made a big difference to my quality of life.

marie

[carolg1 in reply to MarieW-F]

Thanks Marie xx

[lulu5555]

I too have been on them without a break for two years, since then i have had 1 chest infection not to bad. I think there great, as before I had infection every month.

[carolg1 in reply to lulu5555]

Thanks LuLu xx take care and keep well sounds if your doing ok xx

[pollyjj]

I have been on them 3 times a week for over 2 years now and only stopped once when I had pseudomonas then went straight back on them, no mention of having a break.

polly xx

[carolg1 in reply to pollyjj]

Thanks Polly xx stay well

[Maximonkey]

Hi Carol, I have been on Azithromycin for 2 years and no pneumonia, I have had the flu which nothing will prevent and one virus which anyone can catch so for me after being at deaths door, Azithromycin is a miracle drug. I was told when I went on them I could have problems in the future with Tinnitus but as I was so ill I did not care and I am not sorry. I have developed Tinnitus which is a pain but I am well and happy and the doctors are working on it for me. I would not hesitate about taking these wonderful tablets. I think every Consultant thinks differently about this treatment. In my case there was no option I either took the Azith or died. Make up your own mind, it really depends on how many options you have. Good luck, take care and stay well. Maximonkey

[carolg1 in reply to Maximonkey]

Hi Maximonkey, your post has really cheered me up Ive had a few replies all positive really so Im going back to my doctors and ask him to put me back on and if not why not !! he had better have a good answer , I cant guess on peoples ages who have responded so it can be difficult to judge sometimes, Im 58yrs and feel Im not ready to go yet but this last chest infection of mixed bacteria ??? has nearly killed me off, I have a terrible amount of mucus as it is but when Im infected I am literally drowning, thanks so much for replying, stay well Luv Carol xx

[Maximonkey in reply to carolg1]

Hi Carol, I am so glad I helped. Good luck with the GP and if he says no (it may be up to the consultant to prescribe these tabs) ask to either see the consultant asap or for the GP to write/phone the consultant and seek help on your behalf. I have Asthma and Bronchiectasis, I don't know what you have so things for you may be slightly different. Having said that, before I was prescribed Azithromycin I went through a stage where I was desperate for help and my GP could not help me, as no-one knew what was wrong with me. I spoke to my GP and told him how I felt (crying all the time) he was great and told me to phone my consultant's secretary as soon as I got home and tell her how I was feeling. Within hours my consultant phoned me and arranged an emergency appointment. I am so glad I asked for help, sometimes we have to show our GPs how desperate we are to get the help we need. After all they only see us for 5-10 minutes. Good luck and do contact me again if you need to have a moan. I know sometimes I feel like a moan and do not want to burden my family. Take care. Maximonkey

[carolg1 in reply to Maximonkey]

Hi Maximonkey, You are so right I plod on like a trojan but inside I am dyeing and like you they cant come up with anything to slow the amount of mucus down, I firmly believe a lot is to do with the sinus, but at present it is so serious the amount of mucus coupled with the latest infection I am bordering on suicidal,, I have so much to live for particularly my young teenage son who I really feel for having to watch me struggle so , Im back with me GP tomorrow morning and I will take it from there,

Thanks for you help I will let you know how I get on.

Love Carol x

[Maximonkey in reply to carolg1]

Hi Carol, I too had the mucus problem (I have always suffered with allergic rhinitis which is a constant drip at the back of the sinuses which makes the throat feel thick and tastes horrible. I too went to the ENT for tests however, they could do nothing except tell me to keep rinsing my sinuses, which I do most days) it really works. If you wish to try it buy Sterimar around £8 from large chemists or make a potion of your own as follows: put tsp salt into around 1 pint of boiling water and stir with a sterile spoon, place a lid on top and when it has cooled you may use it for 3 days (keep it in a sterile container in the fridge. You will need to ask at the chemist for a small syringe (they are very cheap) then you fill the syringe full of the sterile salted water and shoot it up you nostrils, closing the other nostril. You can move your head and feel it moving. Spit it out and do second nostril, spit that out and for around 5 mins you probably will be blowing your nose. If there is any infection you will see it and it is better out than in. I am sure it will help to make you feel better. I know it sounds gross, but believe me you will feel better. Take care. Good luck at the GP's. Maximonkey

[carolg1 in reply to Maximonkey]

Thanks again MaxiMonkey xxx Carol

[Maximonkey in reply to carolg1]

Hi Carol, how are u today. Are you back from the docs yet? Take care Maximonkey

[carolg1 in reply to Maximonkey]

Hi Maximonkey, yes just got back from docs with my new antibiotics which he wants me to take prior to my consultants visit and then to discuss further long term therapy with him (pass the book !!) so I am going to take them and I intend to make a few notes this time before I go to see conultant and take them with me I do have a lot of questions for him, I do feel a little better today though my chest is like a packet of crisps and so much damn mucus, but hey ho onwards I go haha, take care , luv Carol

[Maximonkey in reply to carolg1]

Hi Carol, glad you have some meds to see you through to your appointment. Do make notes to take with you. I did a daily diary when I was at my worst and my Consultant was very glad to see them, in fact they are still attached to my file and every now and then they refer to them. I do hope you are feeling more positive. Sorry your chest is crackling. I know what that feels like. Take care and take it easy, you have asked for help and you will get it. If you don't you can insist. Good care is your right. Off to see my doc now. Maximonkey

[carolg1 in reply to Maximonkey]

Thanks Maxi we are never away from doctors are we, well onwards and upwards , xxxx

[Barbie52]

I am on Dixicyclin 50mg daily for life with Rulide or Azithromycin as booster

[carolg1 in reply to Barbie52]

Hi Barbie, How long have you been on these and dare I ask your age , ill understand if you dont want to make it public lol take care luv Carol

[Barbie52 in reply to carolg1]

Hi Carolg

I am 62 and I have been on the long term Doxicycline about four months now with no negative side effects

I am on them as a control for both Bronchiestasis and CVID

Prior to being on the long term therapy I had repeated infections for the previous 12 months and had been taking every antibiotic out there

I think what stabilised me was Azithromycin and steroid therapy

I then had a Bronchoscopy and lung wash

[carolg1 in reply to Barbie52]

Hi Barbie,, yes same here I am really suffering, I have heard about the lung wash , when I mentioned it to doctor he just shrugged his shoulders !! well Im going to go all out and attack and try and get them to listen to my suggestions mainly what I have heard on this wonderful site, where are you from by the way, wondered if the NHS in your area is better than mine here in Yorkshire lol , thanks so much for your time it really is appreciated x stay well Carol

[Barbie52 in reply to carolg1]

Hi Carolg1

I am in Australia

We have great healthcare but nothing like this site therefore I have wiggled my way in with you lovely UK people

Carol don't be fobbed off

Even though we have a great healthcare system it is very ordinary for Bronchiestasis and CVID and I have found the money to see a respiratory physician and a leading immunologist

My problem is finding a GP who has the knowledge and time to manage my case

In Australia both my conditions are specialist level consultations and I either have to find the money for each visit or join a private health fund

The Bronchoscopy and lung lavage (wash) could only be referred by my specialist the same with my Immunologocal tests

The Beonchoscopy was to eliminate certain bacteria in my lungs and check the scarring

I had no bacteria and after the procedure was exhausted for a week then felt so clean and non toxic for once but slowly going backwRds again

I am now having referral to Gastroenterologist as there is no obvious cause of why I have had life threatening g lung infections my entire life

The suspicion is now acid leaking I to my lungs and infecting and scarring them especially ad I had infant Pyloric Stenosis

I am telling you all of this as for 62 years I was diagnosed ad asthmatic and after rigorous testing (Mannitol and bloods) I am not an asthmatic and the cause has not been identified

I do not have lingering bacteria and have a healthy constitution except for extremely bad exacerbations at the slightest cold

So persevere and trust your knowledge and intuition of your own body

[carolg1 in reply to Barbie52]

Hi Barbie, Thanks for the reply and information , knowledge is the key with this horrible disease, I am sure I wouldnt be here now had it not been for the knowledge ive received on this wonderful site,

stay well,

Take Carol Carol xx

[Bryju124]

I think a lot has to do with liver so if anything showed up on bloods they would stop it for awhile I too am on azithromycin and am suffering with my finger joints very painful and unable to bend so eti es they lick up, I be.ieve a side effect however no way am I giving the azithromycin up feel so much better on it x

[carolg1 in reply to Bryju124]

Thankyou Bryju123, isnt this site brilliant , yet again I have learned so much more on here than from my GPs , take care and keep on being well xx

[pollyjj]

I don't mind saying I am 67

polly xx

[carolg1]

Thanks Polly xx

[Sohara]

Carol.. I 'believe' that Azithtromycin is mostly useful to bronchiectasis patients, as they suffer from repeated infections....its not so much prescribed for COPD patients. ( although most brochiectasis patients do in fact also have COPD ) and I think what the person who's consultant says its mostly prescribed for 'end stage' patients meant, is that it only used when the repeated infections get really hard to clear up, and I was told the next stage for me will be IV antibiotics in the outpatients at a hospital....so it is getting near to one of the 'last steps' of antibiotic treatment for chest infections ....unless some new thing comes along ( we can all hope)

So I personally would not rush to go on to Azithromycin as a daily ( or 3 times a week ) drug IF it can be avoided by the taking normal antibiotics, as I have not been able to find out yet how long the protection from infection lasts....the longest I have read anywhere is someone who has been on it for 6 years

I too have found it to be a miracle drug for me....and I am grateful that I was put on this drug.....but I do feel its effectiveness will wear off over the years

So the longer you can last without it, then I personally would say , try to find an antibiotic that suits you and have that as your stand by AB... you are young, the Azithromycin will always be there waiting for you, once you get to the point that you are never infection free , like I was getting to.

This is just what I 'think' Carol, its up to you what you decide to do

I have had Broch since a baby...and managed for many decades taking 'normal' antibiotics when I had an infection...OK the doses got bigger over the years, and the length of time I was on the AB's for each infection got longer & longer...but finally when the AB's steroids etc etc stopped working for me...I reached the stage I am at now ( stage 4)

I have always wanted to stay as long as I could at each stage ....getting immune to antibiotics was an ever present threat.....now I am on them all the time , I just hope my luck holds out and the Azithromycin works for me for several more years to come

Good luck

Sohara

[carolg1 in reply to Sohara]

Hi Sohara, Bless you for your kind and thoughtful reply I will of course give it a lot of thought, the problem I have is getting put on the right antibiotics for a particular infection the samples after about 6 finally shows which infection it is and by that time Im in a bad way , I know in myself when an infection is looming , I feel like I have got a giant slug stuck permenantly tugging at the bottom of my lung sometimes it moves !!! vivid imagination haha, Im sure if they could get rid of that I would be 70 percent better when I explain to doctor he hust looks at me gone out , once again thanks stay well , Carol xx

[Fanacapan9]

Hi carol, Thankyou for the reply, I'm just 70 now, was diagnosed with emphysema when I was your age. This was found through spirometry tests. Never saw a consultant till a year last January only to be told "sorry you're end stage and there's nothing more we can do ! I felt devastated, I do have a respiritory team who I see and it was those who said that about the antibiotics. On a more positive note I've requested another visit to see a consultant and my gp has referred me, all this due to BLF and this wonderful site, thanking you again and take care, Anne x

[carolg1 in reply to Fanacapan9]

Hi Anne, well done for requesting another visit, I cant begin to tell you how much the people on this site have helped me, I swear but for this site I wouldnt be here now !! I understand and manage my disease so much better, apart from the gross copious mucus that is lol take care and thanks xx Carol