Hi,
I have bronchiectasis and have been diagnosed with a non TB Mycobacterial infection. I start a treatment of antibiotics in a couple of days which will involve taking tablets for 3 antibiotics every day for possibly 18 months. I am apprehensive about how this will go taking these drugs for so long and the side effects although I know I need to do it and it will be good if it clears it. Has anyone had experience of treating this bacteria this way?
Thanks.
Sorry to hear this. I have no experience with being on antibiotics for such an long time but I would recommend trying to get extra bacteria for your stomach and fermented foods will also help.
Hi
Yes I spent 2 years and 2 months on what are known as the Big 3 - ethambutol rifampicin and clarithromycin ( the latter apparently helps your body not to become resistant to the action of the other two as you take them for such a long time). The treatment was for MAC. I now get tested every 6 months to see if it has returned as there is a reasonably high chance of it recurring apparently. I finished them September 2022 nothing back yet but lungs now colonised with proteus mirablis which causes more problems and is also not very common. The ABs were fine when my body got used to them which took about a month then frequent episodes of GI problems - probably 4-5 times a week - and probiotics didn’t help much. However I am pleased I completed the MAC treatment and you just plan around the side effects. It can make being away from home a bit awkward in my experience to start with and I got a daily pill organiser for each time of the day as there were 16 different AB tablets to take in the day. I also took Rifampicin after breakfast instead of before as I just couldn’t tolerate them on an empty stomach. This was not the consultant’s optimal choice but it made them perfectly tolerable once I got used to it. I understand there is a high rate of treatment failure due to people not being able to complete the course due to the side effects. I was originally told 12-18 months but it ended up being 26 months. I felt pretty well afterwards and my stomach recovered quickly when I stopped taking them. Good luck and I hope that was useful - sorry for long post!
Hi I was diagnoses with this, but decided not to take the antibiotics. I am still here 2 years later and after a bad bout of Covid
I’ve been on azithromycin for almost 10 years now, I take it 3 times a week. I’ve been fine and I have a different antibiotic in my rescue pack. For the last 3 years with the agreement of my consultant I’ve taken a break during the summer months. In fact I start back again on it today. I’ve not had any side effects and as I said when I’ve needed other antibiotics they’ve works and this includes pseudomonas infections. The only side effect I had was that if I didn’t take it first thing I got a bit of an upset tummy later that day. I hope your treatment works for you.
I was prescribed Azithromycin to be taken 3 times a week. I decided not to take these as dont believe in taking antibiotics unnecessary unless I have an infection. I have my rescue pack thats good enough for me. I took them in the beginning but made no difference as got more infections so stopped. xxSheila 👍
Some of these bugs take a lot of shifting. With the general advice about cutting back on the use of antibiotics now, the consultant would not be prescribing these for so long if there was not a very good reason.
It must be a very nasty and stubborn bacteria to have been prescribed this. Myself I would most definitely be taking them until the bacteria was under control. Infections leave lung damage which accumulates.
The people taking Azithromycin 250mgs 3 times weekly is as a prophylactic only, we would be prescribed a different antibiotic if we actually succumb to a bacteria and grow an infection in our lungs.
Good luck Aljim, a healthy weight, gentle exercise and a healthy diet containing plenty of pre & probiotic foods will help your body tolerate these meds. Personally, I would be taking them with food.
18 months sounds a long time. I have bronchiectasis and was diagnosed with tb ( different situation from you obviously ) I've been put on antibiotics for 6 months consisting of 12 pills every morning to add to several others I take for my other conditions.
sorry no experience but wish you well x
I,ve been through the same treatment. All was going well till they swapped the ethambutol for Ciprofloxacin because it was damaging my eyes, the Ciprofloxacin absolutely destroyed my body with disabilities you give to your worst enemy. After that they gave me Amakacin, Rifampin, Azithromicin and clofazamine. But I could only do six months of that because they seemed to be making my symptoms worse.
My last test showed no bacteria however I still have cavities in both lungs and cough up blood most days.
I think I would have been fine if not for the Ciprofloxacin.so my advice is think hard about taking any Fluroquinolone antibiotic if they want you them. Good luck my friend.
Hi Jack, sorry to hear you were given Ciprofloxacin - and sorry you had to learn the hard way that all the fluoroquinolones can cause destructive side effects. I don't know if you've found out much about the dos and don'ts of being floxed (affected by one of the -floxacins) but it's best to make sure that you don't take Ibuprofen (or any other NSAID) for pain as these, and steroids, can make things even worse. Did you report your adverse reaction to MHRA Yellow card? (They want people to report reactions to any drug to help build up information). Just google it and the address will come up. There's a UK fluoroquinolone support group on FBook if you're interested in meeting others affected by Cipro. I'm not a health professional but have learned about Cipro and the other fluoroquinolones from experience.
Hi Miriam, yes I trawl the internet night and day(can’t sleep anyway) educating myself how this happened and how to fix it. Are you the Miriam from the public hearing on fluroquiolenes by any chance? I am going to join face book group and report the mess this Ciprofloxacin has made of me to the MHRA.
Ha ha, that's me - there's never too many Miriams about in any one generation! You'll know that insomnia is another adverse reaction then. I don't come on here very often and I'm never sure what I can post but I try to look for people who have been affected - whether they realise it or not. Many are diagnosed with fibro or CFS or "it's in your head" but it takes so long to check out every group! I'll look out for you on FB and well done for reporting - if everyone did then they might sit up and take more notice.
Thank you for all of your replies, really helpful to hear and be aware of everything. The 3 I’ve been prescribed are Azithromycin, Ethambutol & Rifampicin. Thanks for flagging the problems with Fluroquinolones - they sound terrible.
They truly are although many people can take one or more courses without any problems - or so they think. Fluoroquinolones are unique in that they affect our mitochondria (the "powerhouses of the body") and how many tablets it takes to leave us with dreadful side effects depends on age, health, and any genetic deficiencies (whether known or unknown). Some people are devastated by their very first tablet (rare) others can take 2 or 3 courses (most common) while yet others say they took over 50 courses with no ill effects before they suddenly crashed from the cumulative effects. The biggest problem is that a doctor is always taking a risk when prescribing fluoroquinolones because they can't know who will be affected or, more correctly, when (because we all have mitochondria).
Take care and always ask for an alternative if possible. When taking any antibiotic, it's always a good idea to take a probiotic - only space them with maybe 3 hours apart to give both anti and pro time to do their respective jobs. Your gut depends on trillions of bacteria to work efficiently and these get killed off by the millions each time you swallow an antibiotic!
Hello there, my wife is from a south east Asian country, but has lived in Australia for about 25 years and is 66 years of age. She is now on about day 325 of the so-called big three antibiotics, Rifampicin, Ethambutol and Azithromycin. She takes 600mg of R at 6am before breakfast, so on an empty stomach, and at 8am, while her tummy is still full from breakfast, she takes 2 Es 400mg each and 1 A 500mg. She has experienced no side effects with the sole exception of a bad tummy ache one morning in Sydney and this just may be chalked up to what she ate for breakfast that morning. She used to take the E and the A some time after breakfast and told me that that caused her to have a tummy ache for a little while, but not serious. She has since taken the E and the A soonish after breakfast and this has resulted in just about no tummy aches at all. Just to confirm: she has experienced none of the possible side effects that she was told about by her nurse. We expect that she will continue to take the meds for another five months or so. Hope this helps and please feel free to ask me any questions you might have.
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