Azithromycin: "To do or not to do."

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Charlie, you have recently stopped AZ. for cramping. How are you? Hope you are better.

Is anyone else either using AZ or have used AZ in the past. What experiences have you had, etc.

I have been on AZ for two monts and am having many fewer infections, infact none.. But of course I would rather not be reaping havoc on my GI tract and breading SuperBugs.

Thanks for any advice in advance.

Best

Russ

 

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  • Posted

    Just bought some to take as it happens. It was one of the two antibioics recommended by my consultant at my last review (the other being Gentomycin).

    Your comment about impact on GI tract and contributing to superbug creation. Was that a comment particularly targeted at Aithromycin or a generic concern about taking antibis vs not taking antibis? Patient guidance info on the internet and in my medecine pack doesn't single these out as issues, so I'm suspecting the latter ... but if you know diffrerent, do tell!

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    • Posted

      Steve thanks for your valuable infomation on this topic.. Yes you are right it is the latter. More responces than I thought an all valuable beyond measure. Do you use any GI track bacterial replacement ? I am using a replacement called PB8 two capsuals a day.

      I would like my stools to have a slightly more "normal" fragrance if I can mention this in our public forum. Oh hell, it's our lives tht we are battling for here.

      Best

      Russ

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    • Posted

      Haven't found the need for anything special Russell. That said my pooh has always smelled pretty bad!

      I do have a breakfast diet that tips its hat to the stomach and regularity though - pro-biotic yoghurt + bran flakes and full fat milk (I can say that last bit now that the UK experts have come out and said full dairy milk is not bad 4u after all) + baked beans on wholemeal or granary or dark rye toast. I also get through about 2 kg of fruit (half that once you have stripped it down to the edible bits) a day starting at breakfast. I am lucky enough to live in Thailand where fruit is plentiful varied and cheap - between $1 and $1.5US a day per kg - I internationalised that to US since some cannot do the mental gymnastics to convert GB pounds and very few would know what 30-45 Thai baht is worth! 

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    • Posted

      Steve, thanks for the update on your diet. I am slowly changing my diet that is all about oat meal and other cereals with plenty of fruits along with mostly chicken as my protein source. Yogurt and probiots. Today I listened to a radio program about the use of prebiotics for depression that is in the experimental phase. Aprently the prebiotcs provide "food" for the bacteria that we ingest in the probiotics.

      Ant thoughts about "Prebiotics"

      Anyone else who might read this please respond if you have some experience or knowledge on the subject.

      Best

      Russ

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  • Posted

    I have been taking Azithromycin for a few years now & it has made a huge positive difference. It's important to take it as directed though. I would be interested to know of anyone's experience of discontinuing it after a long spell & whether or not all the previous symptoms come back. My symptoms improved soon after commencing it. I have far fewer infections (1 or 2 a year at the most) & very little mucus since starting it. Not had any GI problems.
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    • Posted

      4Jean, great to have your feedback. I have not stop it so far. Its only my third month. So far it seems that the response of those on our site have been very positive, even over a long period of time as Dale reports.

      It has been my experince that my life has been changed in such a dramatic way. No new infections and much increased energy levels that it seems it should be a mainstay of treatment.

      Glad you are doing so well.

      Best

      Russ

      Bes 

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    • Posted

      4jean, this is an old topic, but would like to have an update. How much (mg) of the Aithromycin are you taking and how often. I have noticed that some on the stuidies have used 250mg and others 500mg MWF. Also do you plan to stay on Az for a long time, like Dale says below?

      Thanks

      Russ

       

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    • Posted

      An old topic but a useful one! Yes I think I will continue on Azithromycin.....I take 250mg Monday, Wednesday & Friday. It has made such a big difference. My GP has suggested I stop it for a few months in the summer but I am reluctant to do so. She is very good & lets me make my own (within reason & with discussion) decisions! Maybe next year I will try coming off it for a break. Just don't feel like risking it at the moment!

      Regards

      Jean

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    • Posted

      4jean, thanks for your reply. Very improtant for me at this time. I have been on the 500mg dose MWF for four months and began to "feel" overdosed, like I was "drinking a cup of Roundup three days a week. I could smell the Az in my urine and in my breathe. I checked online for dosings for the Az trials and noted that 250mg is a common dose.

      I weigh 145lbs.

      So Im glad to hear of your good results and now I can get with my doctor and try the 250mg. Half the dose sounds much better.

      Best

      Russ

       

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    • Posted

      Hi again Russell.

      I think the 500mg azithromycin capsule is a one-a-day dose for the 3 day period typical dosing to fight an infection. When I took up azith 8 weeks ago I read-up on the various guidelines published on the internet and given in the medecine leaflet included in the box. In fact because I buy my meds over the counter in Thailand and because I kept finding a cheaper variant I have three different manufacturers leaflets to read. The dosing is always 250mg x2 for 3 days or 500mg x 1 for 3 days as an infection-fighting dose and (when mentioned) a 250mg x 1 3 days a week prophylactic dose. Like Jean mentioned, Mon, Wed, Fri works best for me*. 

      Like others on here I found azith to be a really good antibi. It had an almost immediate miraculous effect (like next day all my bronchX symptoms lifted and I felt euphoric) and has now settled down to be not quite miraculous but nonetheless a hugely significant improvement on my disease. 

      I am temporarily back in the UK, now preparing a brief for my Papworth specialist, who I see tomorrow for a routine check-up (with CT scan already acquired in Thailand at half the UK price and no doubt breathing tests and bloods to be done!). So forgive me if I kill two birds wth one stone and give readers a rather more detailed analysis of the significant improvements I have experienced with azithromycin over my previous antibis - which had tracked through a 2 year period of ciprafloxacin, levafloxacin, amoxicillin+clavulanic/aka 'Augmentin', doxycycline and moxifloxacin/'Avelox'. Improvements have been as follows:

      - with previous antibis I felt an infection was only potentially a couple of days away and I had to step up from a prophylactic dose at least every 2 months (and this step-up had not been an overreaction; I always waited for at least 3 flags of impending infection). I now feel that there is nothing lurking waiting to strike.

      - my sputum had never been violently green or brown, even under infection, but it has usually shown some trace of grey or light brown (think capuccino swirls). With azith my sputum is now almost always white and translucent

      - my sputum is much reduced in volume - reduced to about 10-20 ml/day compared with 40-80 (depending on infection presence) before

      - I now rarely get any feelings of inflammation lurking in my lungs. Previously I would feel an onset during the evening, continuing through the night and making me feel a bit horrid for the first 30-60 minutes on waking

      - I previously had boughts of temperature control issues; heightened temperature, cold sweat, night sweat (though rarely fever). In the past this had invariably been the last flag that tipped me towards full dose from prophylactic. Have not had even a mild experience of any of this in the last few weeks

      - I have very rarely had any feelings of exhaustion or tiredness. Previously I would have periods (typically a week or so) when I would get exhaustion attacks for an hour or so once a day, ocasionally twice

      - My coughing is much reduced and not present at all on some days

      - Previously I would always get a significant crackle at the bottom of my lungs if I pushed 'to the bottom of an exhalation', even when I had got rid of all sputum in a daily physio sesion. Now at worst it is a slight dry wheeze at the bottom once I have finished my (now much shorter) physio sessions

      - I now have days when I don't feel the need for a physio session and I dispense with them if I am having an otherwise super-active day

      - I always mentally self-score my daily half hour swimming exercise as 1 (not peasurable, feeling a bit tight chested, short-breath travel, cough-inducing) through to 3 (a pleasure with clear breathing). Before azith I mostly scored myself 1s and 2s, now mostly 3s. I now do my 50 lengths in one go - prior to Azith I stopped avery 10 lengths. I no longer feel guilty/insecure if I cannot get to do my exercise on a particular day.

      - My mood is much improved as measured by singing along to music in the car and the return of occasional boughts of endorphins/life-is-good thoughts.

      - I now have the confidence to be experimenting with reducing the dosage of my sideline support drugs, which are: 'Symbicort' (corciscosteroid/beta agonist), 'Puroxan' (a doxyfilline bronchodilator) and 'NAC Long' (acetylcysteine mucolytic). I expect to have the confidence to try dropping back to no antibis within the next few months

      I did have a 2-3 week period recently when I had stomach pains, constipation and strange changes in stool that made me concerned about antibi side effects at best and some carcinogenic-flagging concerns at worst. Everything has been back to normal recently thankfully but I'm keeping a watch on that and may consider a colonoscopy as I have also unexplainably lost weight from 78/9 to 75kg in the last few months. I only take probiotic yoghurt (don't know anything about pre-biotics which you questioned earlier- must look it up) and cider vinegar/honey. I have no idea whether the latter, learnt about from you guys on 'Patient', does me any good from a gut flora viewpoint - but it does seem to be beneficial when it comes to my occasional acid stomach outbreaks and it makes a nice change to the buckets of plain bottled water I have to drink daily in a climate that rarely drops below the 32-40 degree range from 8 am to 8pm!

      Bit of a side issue but maybe it triggers a thought with anyone else who self-medicates out there. The only bad period I had in the 2 months period of azith was early on when I switched my prophylactic dose from a European (Sandoz/"Benoyt"wink brand to a cheap generic Thai alternative. I immediately went markedly downhill and it took a couple of weeks of return to prophylactic Benozyt to get me back on track. Could have been coincidence, but we do get (apocryphal?) stories about dodgy local drug copies in the expat blogging community here.

       

      * I have to keep my stock of azith and other heat-sensitive meds in the fridge and take out a three pack on Monday with no need to think about having it with me if I'm off somewhere for the weekend.

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    • Posted

      Hi Steve,

      Thanks for your thorough description of what you have gone through. I appreciate you sharing and although I have mild bx and haven't had to take Azith yet, it is great to learn about it and have it in my arsenal for later - if needed.

      It's wonderful to hear how well you are doing and it gives us all hope that we can get better and enjoy life like you do.

      Ida

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    • Posted

      Hi 4jean, hope you are well. My mum has bronchiectasis and has frequent infections..almost every week. I would like to know how frequently you suffered from infections/ exacerbations before you started Azithromycin? Thank you.

      Yasmin

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    • Posted

      Before Az I would get chest infections every time I got a cold. Probably about 4  times a year. But it was some years ago now so don't remember clearly! And I would have lots of most of the time. The difference has been amazing.

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