azithromycin saga

Hi dear friends

My earlier post described my reservations in taking azithromycin as a a long term solution for treating/preventing frequent chest infections. (I was diagnosed with Bronchiectasis in 2012.) Well after 10 weeks of waiting to get this drug prescribed, I started taking it: 250mg once a day for three days of the week - with four days off and then repeat the same regimen the following week and so on and so on....

Well there was no 'so on and so on' because the drug made me feel bloated with tummy pain, lots of flatulence and loss of involuntary soiling of underwear. Needless to say, I was very disappointed and upset - as I was hoping this would be a simple way of managing the bronchiectasis. I took probiotics the day after the azith for the four days and eventually tummy settled. I am loathed to try it again, however...

Can anyone help, please?

Thanks again for being there.

swimmer

38 Replies

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  • Hi swimmer, I was prescribed and started the same dose in March, I haven't experienced your stomach problems but neither have I had relief from infections.

    Two in the last three months. I am scratching my head a bit at the moment as to the way forward. I shall read with interest the replies to your post. Hope you improve soon. Mike.

  • I think azithromycin has only a 'shelf life' of 72 hours so if you are taking it 3 days a week you have 72 hours of protection after your last one, but as you have 4 days to go the last 24 hours are likely to have less protection. Remember it is a prophylactic drug - its there to prevent infection. As I understand it, it keeps the infection that lives in my lungs under control, but does not necessarily prevent me from getting new infections. the last 2 infections I have had have been when I have been away with work - new places, new people, new strains of infection. I find them excellent but there is only so much they can do. I would speak to your GP to see if you might think about spreading them out over the week like many of us do.

    Good luck

    Mx

  • Thanks Marie

    I could try the alternate day regimen and see what happens. It's the stomach problem that makes me reluctant, but perhaps taking it on alternate days would help that too.

    kind regards

    swimmer

  • Thanks Mike. I do know that some people take 500mg every other day - with a two day break before starting again - i.e. Take Mon, not Tues, take Wed ,not Thurs, Take Frid but not Sat or Sun and then begin again on Monday. (Taking probiotics on the weekend to address any stomach problems.) They have told me that it is effective....

    Good luck

    swimmer

  • I was on them 7 days a week ... Not on them any more I have had nothing but guts bowls trouble .. Have you tried taking just before food.

    I tried probiotics and all was waste of time .... Currently am on doxycline as maintenance antibiotic.

    Also I to am undergoing test for guts boŵls trouble ... Just been put on mebeverine to try settle my guts bowls trouble.

  • I took them away from food - think I was told to, but I could try them with food and see if that helps.

    Many thanks

    swimmer

  • Do give it another go. I have always taken Azi alternate days (ie Monday, Wednesday, Friday) not three days in a row. I found that probiotics helped with the stomach problems, but the most helpful thing for me was a gluten free diet. This can seem like real ordeal at first but you do get used to it. You may be one of the unlucky ones who cannot tolerate azithromycin, but it is such a useful drug that it is worth a bit more perseverance. Best wishes, Monkey.

  • Great suggestions - will give them a go.

    Many thanks

    swimmer

  • Hi

    A lot of us are on that including me and i never had any of those symptoms...could it have been something else that caused it....only trying them again would tell you that x

  • Hi - it was definitely the azith that caused the problem. I have used clarithromycin before with similar results and, I think, the two drugs are chemically similar...

    kind regards

    swimmer

  • Yes you can defo tell it's the drugs. I am intolerant to most of the mycins too. You are right swimmer Azith and Clartith are in the group of abs macrolides. The Tobramycin I nebulise is in a different group of abs - aminoglycocides.

    We are all different and what suits one person doesn't necessarity suit another.

    p.s. Same thing happened again with my Monday Azith 2nd dose. Fine on the day of taking and gripes and runs the following day. :-(

    cx

  • Hi again

    Spoke to a specialist nurse at blf, yesterday, who said the alternative day approach was worth a try. She also said that some people have found hi strength maluka honey helpful, but the genuine stuff is pretty expensive - £40 or so. Have you tried this? Nurse also said that the some bacteria degrades/disintegrates within 3 hours of leaving the host - i.e. me, so that the numerous green sputum samples I have delivered to my medical centre test 'normal'!! (They are driven to the nearest lab some 15 miles away....)

    Frustration rules at the moment.

    Many thanks for your kind help.

    swimmer

  • Hi swimmer

    Glad you spoke to the BLF nurse - sound advice to try alternate days.

    Have tried manuka honey = lots of people sware by it. Funnily enough amongst all the things my IBS dietician said not to have was honey!!! Now I will have to check out her reasoning when I next see her. It could well be that I saw her when I was on the Tobra rather than oral abs and with IBS it's not always the runs that is the problem, but constipation. So not sure if she was meaning whilst that was the problem. Something to do with insoluble fibre. Will clarify when I see her next. May be good for the problem you are experiencing.

    Yes true bacteria samples taking too long to get from the patient to the petri dish is the reason for many false negatives. The samples are picked up at my surgery at roughly 12 noon and also at about 5pm. I get them down as close as possible to the time (I do fill in my own MC&S forms, so if you don't allow a little time for the nurses to fill it in). I also do physio for the sample and try to get gunk from various places where I think worst, unless I have a foul taste, then it seems ok to just cough up.

    The docs tell you the best sample is first thing in the morning (which is right), not a lot of point however, if it is not collected 'till lunch time.

    Don't get too frustrated hun - I am sure your con will sort something out for you.

    BTW when I took my last Azith I did have the runs but practically straight away this time and no griping pains. So will keep on trying.

    cx

  • Hi swimmer

    I empathise totally. I am very intolerant to many drugs including many abs. I have tried to take Azith in the past on numerous occasions and have always had hurrendous stomach cramps and then the runs. I was however, taking oral abs the majority of the time also because of very frequent infections and having GI probs. Since nebulising Tobramycin my GI problems have improved and I asked my consultant if I could have another try. The usual dose folks take is 1 Mon Wed Fri but my consultant wanted me to take them twice a week Mon and Thurs - he wanted me to use them for my asthma because of their inflammatory properties.

    I took my first Thurs and was absolutely fine - it was a miracle. The next day the pain and runs kicked off again. I have just taken my Monday dose - so I am waiting to see how it goes.

    It would be worth asking if you could take them Mon Wed Fri instead of 3 consecutive days. You might not have the side effects. I hope you (and me for that matter) are able to stay on them as so many folks have found them to be beneficial, getting less infections than before.

    Good luck to us!

    cx

  • Hi coftdrop

    I have an appointment to see the consultant in October - earliest I could get - so will ask her about different methods of administering the drug or she may suggest an alternative.

    Many thanks as always for you kind and detailed reply

    swimmer

  • I have never been prescribed Maintance Antib. I did have recurrent chest infections. I took sputum samples to my GP surgery use my emergency antibs until they get the results & if necessary change to a prescribed antib specific to the infection. I drink bottled water only also for teeth ckeanibg. Use first defence nasal spray and use Hand jell like it's going out of style. Use a dishwasher and avoid using tap water for anything unless it's boiled. I have not had a Chest infection for 3 months not sure if this will help you but It did me I have COPD, AF AND Heart failure. Good luck & Best wishes Nan

  • Hi

    What you do is what I have been doing for three years, but I just kept on getting infection after infection and I think the consultant thought that a maintenance drug regimen would be more effective.....

    I am also very hygiene conscious but the general public may not be so scrupulous.

    Kind regards

    swimmer

  • Hi Swimmer so sorry if I came across as being a know it all. Hope you find the solution soon it's so much xhasting having lots of chest infection. Best wishes Nan

  • How discusting,I asked the doc about these Anti bs ,he said nothing, I'm so glad I was not given them, the fact is they do not know!!! They forgot to train pulmonary nurses,because of cuts,that's why it's all such a mess!!! my doc even said NO MORE STEROIDS, so I said " what do you suggest then???????there is NO OTHER MEDS!!!????yes find somthing else to help us.

  • It's a mess alright but the NHS has massive problems and no money in the pot for everyone. I think I need to take more responsibility for my health and spend more money on really good dietary improvements even though I have a tiny budget to live on. What other choices are there?

    Kind regards

    swimmer

  • Bloody discusting.....I'd rather have infections than an upset stomach and pain,useless.

  • Exactly.

    Thanks for putting it so clearly.

    Kind regards

    swimmer

  • I see your point but if only it were that simple. Having an infection means taking oral abs and those of us who get pain and stomach upsets with Azith often get it with other abs. We are between the devil and the deep blue sea.

    love cx

  • I have been on a Azithromycin for two years now,I have not had many side effect but also not had man infections or flare ups.

    I get bloating from time to time, but managed with probiotics.

    We have to remember that what works for one may not work for us and try to find ways round the symptoms and Sid effects, but all in all I find these antibiotics helpful.

  • Really glad Azith is helping you. I guess I need to try something else or another form of taking it - e.g. inhalation?

    kind regards

    swimmer

  • Hi Swimmer,I have been taking Azi for about six months now.No noticeable side affects but have noticed if I run out of probiotics I get terrible acid reflux,which I have a little of any way.Hope things improve for you,oh, I have,nt had any infections since using Azi.Best of luck,D.

  • I have heard many others who are helped by azith so I might give it another go.

    kind regards

    swimmer

  • Hi Swimmer, I am so sorry you have had such a severe reaction to Azith. I too had minor problems when I first took them, such as bloating, tummy ache and flatulence, however, I took natural yoghurt twice daily which helped. I had been prescribed the capsule type of Azith which needed to be taken 2hrs before or after food which was a real pain. After 4 weeks or so all the symptoms stopped as my stomach got used to the drug. I have not been really ill since, no more going to hospital every 6 weeks or so and only one or two infections which because I now have my emergency meds have helped me tremendously to stay well and lead a normal life. I now take Azith tablets which are great, I can take them with food so I take them first thing in the morning on an empty stomach and then have breakfast, maybe this makes a difference, I do not know. I only know I wouldn't go back to life without Azith as it was no life at all and I probably wouldn't be around now as all my organs had started to fail during the last two bouts of pneumonia. I suppose what I am really saying is, it depends on how ill you feel without Azith, if you are not very ill then you probably will not feel it worth putting up with the symptoms until your body adjusts, however, if you are feeling dreadful - give them another go and take them Mon, Wed and Fri. I only know they are my little miracles. Take care. Good luck. Maximonkey

  • Thanks so much for your kind reply.

    I will get some recommendations from the blf help line as I was given very little info by the consultant about methods of taking the drug. Quality of life is pretty ghastly at the moment....

    Best wishes

    swimmer

  • Hi Swimmer, I've taken Azitheromycin for several years with no problems at all.

    I think it may be something else that is causing your problems. If you don't see a respiratory consultant ask your doctor for a referral so that you can get yourself sorted out. Good Luck. Take care, Lizzy

  • I will try it agin and see what happens but I have had clarithromycin before with similar side effects....

    with thanks and kind regards

    swimmer

  • Hi Swimmer and all,

    I have been taking Azithromycin since last November 3 tablets a week Mon Wed & Fri and did have some settling in problems but I have only had 1 infection in that time which needed a change of antibiotics for three weeks but no prednisone which has been such a blessing as the previous couple of years I had at least 15 of them over the two year period and the prednisone was taking an awful toll on my body and eyes.

    I do have periods of bloating (not as bad as the preds) and unfortunately my cough and mucus have not diminished that much but at least I am able to have a more normal life.

    As for the other problems - I have had IBS for many years so have become quite used to griping pains and toilet emergency's they would be there anyway and as all antibiotics have the same effect, what can I say - I clench my buttocks and make a beeline for the loo, stopped being embarrassed years ago my family and friends know the situation and take no notice. Imodium is a great help on the occasions when I just want to enjoy myself without to much worry.

    Please have another go, I have felt so much better these last few months, even my little granddaughter said "Nanny you smiled without me asking you to", so I know they have helped me.

    Sue

  • Lovely response, Sue. Thanks so much for your support. I will give it another go. Unfortunately, I do not have any family much and those I do have are miles away - so no-one notices if I am smiling or not...

    kind regards

    swimmer

  • Perhaps I am just lucky but, I have been on this drug for the past month one a day, every day. No side effects I take it first thing in the morning, breakfast a couple of hours later.

  • I have heard of folk being prescribed these for 3 days in a row and I have never understood why. They have a 'life' of about 72 hours so not taking them for 4 days seems pointless. Monday, Wednesday and Friday for me. I am sorry you have had trouble with them. I don't have any sort of side effects but we are all different. maybe you should speak to your GP/Consultant about the timescales for taking them

    Mx

  • Am getting more specialised advice as you suggest.

    Many thanks

    swimmer

  • Hi Swimmer, thanks for the reply. I am sure BLF will have helped you. If you have had problems before on antibiotics then I should look at your diet. I know my hubby has a sensitive tummy so maybe until your tummy settles down cut down on veg and fruit. Good luck and let us know how you go on. Maximonkey

  • Hi again

    My diet is rubbish actually as I don't have the energy to cook or shop so end up eating quite a lot of bread with cheese and sometimes salad and lots of caffeine and sugary snacks to keep me going. I also comfort eat, as poor quality of life and loneliness are big problems.

    Still, am 'down but not out' so will persevere.

    Many thanks

    swimmer

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