Azithromycin for the 1st time not agreeing with me

[Homer12]

Hi all,Regarding when people 1st went on Azithromycin and it didn’t agree with them what happened next regarding long term antibiotic treatment ? I started Azithromycin a week ago and every time I take one a few hours later I feel lousy,It makes me go to the toilet a lot more (not diarrhoea but loose stools more than normal) It’s just not agreeing with me and I’m usually fine with most antibiotics,Thanks

[Patsy164]

Hi Homer Sorry that you are not feeling great. I take azithromycin and I can get loose stools. The hospital pharmacist told me to take it first thing in the morning wait one hour before eating. I then have breakfast and take my other medication. I take omeraprazole and take that two hours after taking azithromycin and it seems to do the trick. I can get like it now and again but not too often. I hope this helps. X

[Hidden]

There aren’t any other similar, long term prophylactic options at present. One of the primary reasons azithromycin is used is actually because for some people it has a definite (but still poorly understood) anti-inflammatory effect, which is believed to be how it aids in preventing exacerbations even with bacteria that are not normally sensitive to macrolide antibiotics as a treatment option. Some people swear by it and it makes a huge difference to how many infections they get, but for others (like my daughter who was on it for nigh on 7 years) it has little to no benefit at all, or only for a limited period before it stops helping. Even though it’s been in use for over a decade now, they still don’t really understand how it works or how to identify those it will benefit, but use is increasingly widespread on a try it and see basis. Very occasionally doctors may consider trying another macrolide in the same way, but there’s currently no evidence of any other antibiotic in the class having the same kind of efficacy, and if the unwanted issue you’re having is ‘movement’, then the other two are likely to be even worse: we stopped the Zith for her chest but actually put her on erythromycin because it’s used as a gastro aid to help things keep moving in people with poor gastric motility and transit issues, which she has due to another diagnosis. Works a treat in her case, but does nothing (that we know of) for her chest, and not likely to be helpful otherwise.

I don’t know much about them, but I know some people swear by probiotics for resolving bowel related issues when taking abs - might be worth considering or looking into, maybe? If it helped, it would enable you to also see if the Zith is of any benefit.

[rodders1941 in reply to Hidden]

Charlie l thought your email was very thorough , and l wondered if you had any experience of Nintedanib, l was on it for ten weeks, in that time l lost one stone in a month, plus several other pritty bad side effects . its taken me well over a month now to clear them which l havent quite done yet.l would be interested in your veiws. take care Rodders 1941

[Hidden in reply to rodders1941]

Hi Rodders. Thank you for the compliment on my reply. Unfortunately, although I do know of nintedanib and what it’s for, it’s not a drug I’m massively au fait with as it’s not one used in our particular corner of respiratoryville. I think the real difficulty in relation to IPF is that alongside pirfenidone, it’s predominantly the ‘only’ significant treatment option available, and it does seem to have a pretty hefty reputation for side effects. My first thoughts when you said side effects were the major issue for you are the general principles I’ve seen applied to medication both with the child and myself for our various chronic conditions, namely considering things like if it’s possible to start on a much lower dose and gradually build your way up, or look at medicating for the side effects, at least in the shorter term, to allow the drug a chance to work and see if it is of benefit? This is something done quite commonly with other types of protein and enzyme inhibitors in other specialties eg. JAK and anti-TNF inhibitors within rheumatology, where I’m also now a local resident. A quick look at the BNF entry for nintedanib does state a normal dose of 150mg twice daily, reduced to 100mg if not well tolerated: were you tried on the reduced dose? Have you had a conversation with your respiratory team beyond stopping the nintedanib?

[rodders1941 in reply to Hidden]

Charlie thanks for your reply yes l was given a lesser dose of Nintedanib but at the moment lm still getting over the side effects of the higher dose, until they go away lm going to hold my fire and just do hard regular exercise, and lots of good protein , thanks again for your help my wife and and l would like to wish you and your daughter our best regards. take care Rodders 1941

[rodders1941]

Homer hi the same happened with me taking Nintedanib lv had to give it in

the medication gave me no quality of live at all ,after 3 weeks lm still getting side effects of the drug . l dont know who O K ed the drug in the N H S but they need to take a dose them selfs before dumping it on us . take care Rodders 1941

[AngieB72]

This can happen to me too. Not so much these days as I also take iron tablets for anaemia so they tend to balance each other out!!!!!🤣🤣

[rodders1941 in reply to AngieB72]

Angie thanks for your reply ,lm going to keep off Nintedanib till after christmas .as l said lm still getting side effects from it and until they have gone lm going to hammer the exercising which seems to ease my breathing . take care Rodders 1941

[Cade1]

Really sorry to hear this. I’ve been taking Azithromycin for years in the autumn/winter months only. Can’t really remember if I felt lousy. I do get loose stools, so I’ve started taking probiotics (optibac for people on antibiotics) and after taking them for a week, I seem much better, so will continue.

As Charlie says these seem to have an inflammatory effect and in terms of that there doesn’t seem to be any others that help with anti inflammatory.

[Jandm]

I’ve been taking azithromycin since 2010 and it still affects me from time to time. I used to take it in the morning but I suffered from terrible stomach cramps, so I changed to PM just before I go to bed and the tummy cramps stopped 😃

A bit of trial and error and you will find a time during the day that suits you best

[B0xermad]

Hi Homer12 I am on azithromycin for 6yrs it's all year round for me and yes it can have the same effect on me so no fibre on mon, weds and fri for that reason .it gets more balanced out so not everytime it makes you run to the toilet. The benefits outlay the negative and it's not all bad after a few weeks of taking it.

[garshe]

Azithromycin does not agree with me either so stopped taking it. Not normal having diohrrea etc. (Excuse spelling if wrong) When I get infection I take my rescue pack of antibiotics and steroids. It cant be good taking antibiotics all the time as they have no effect if too many are taken .It never stopped me getting a flare up when I was taking it 3 times a week , just caused problems. Good luck xxSheila

[MoyB]

My consultant considered putting me on Azithromycin but changed his mind when he realised I already suffer with vertigo due to Meniere's disease. He told me a common side effect was vertigo and said, 'And you don't want more of that!!' Instead, for the past two winters I have taken Doxycycline from November to April and this has been a good thing for me.

xx Moy

[Maximonkey]

Hi Homer, so sorry you are not feeling so good at present. Azith does cause some of us to have loose stools at first but bear with it. It took 6 weeks before my body adjusted to Azith but boy was it worth it. Since 2012 when first diagnosed I have taken Azith and my quality of life is really good. Without Azith I believe I would be gone by now. Good luck and take care, Maximonkey

[Homer12 in reply to Maximonkey]

Thanks for the reply,Can I ask what time of day you take them please? I’ve been taking them with food 1st on a morning or at dinner with food and I think that’s not helping me but I’m unsure really

[rodders1941 in reply to Maximonkey]

Maximonkey is Azith a alternative to Nintedanib ? take care Rodders 1941

[Maximonkey in reply to rodders1941]

Hi Rodders, I don't think so. I suffer with non CF Bronchiectasis. I googled Nintedanib and it is for Cystic Fibrosis sufferers. Take care, Maximonkey

[Hidden in reply to Maximonkey]

It’s not used at all in cf, it’s actually for idiopathic pulmonary fibrosis - which I think Rodders May be taking it for - and some types of small cell lung cancer.

[Maximonkey in reply to Hidden]

Thanks for clarifying that Charlie. Maximonkey

[Maximonkey]

Hi Homer, I take mine after my breakfast. I have taken them before food but found I feel better after food. Trial and error we are all different. Good luck and take care, Maximonkey

[daisy322]

Hi Homer12

I take Azithromycin 3 times a week have done for a few yrs I felt brilliant when I first went on to Azithromycin probably first 2 yrs I never found any problems in side affects i always took it on a morning I hour before food

But then I was given the tablet form instead of the capsules at first I never really thought anything about the change then I noticed over the next few months that followed I wasn't feeling as well in myself as I had done the 1st couple of yrs I were prescribed Azithromycin I consulted with my pharmacy over this & she assured me that there was no difference between the tablet form & capsules so I carried on taking the tablet form for a full Yr then out of the blue the pharmacy started sending the capsules up & wow I noticed the difference in how I was feeling for the next couple of months I felt fine then no warning back to the tablet form so accepted that untill I started with more flare ups so I spoke to my GP & asked if it were possible to have the capsules prescribed not tablet form explained the difference in how I were feeling & the doctor said Azithromycin capsules do work better than tablet form for some people because they reach further down in the stomach but some people can have a better result with tablet form so it's six & 2 threes what suits people really I also notice a difference when I receive a different brand of Azithromycin but putting all that a side taking Azithromycin has certainly helped me & I don't know what I would do if I couldn't have it. It has made a difference to me

Hope this helps in some way for you

[shouty]

I had to change my rescue AB's as the Augmentin used to take for couple of years gave me diarrhoea for the 1st time. It's annoying when you have to switch I know