Nearly 3 years on antibiotics

I have bronchiectasis and the doctor has said I will probably have to take antibiotics ( rifinah and ethambutol) for the rest of my life. I know nothing can eradicate the bronchiectasis but even after this long on the antibiotics it doesn't seem to be stabilising. Another doctor has mentioned IV ( different ) antibiotics for a month but with side effects for kidneys, liver can't remember which now. Does anyone else have experience of long term or IV antibiotics please?

13 Replies

  • Lots of people on this site (including myself) are on long term Azithromycin and many do have to go into hospital ( or have in the outpatients or at home) for IV antibiotics. I have not personally heard of the 2 antibiotics that you mention, but I am not medically trained

    Are you under a lung consultant and clinic? you do need to have sputum samples taken to see exactly which 'bug' is causing you the trouble in stabilising .

    Perhaps a good idea would be to phone the BLF help line , they really are very helpful and will give you a lot of very good advice

    Good luck


  • Thank you, I will phone. I take four a day and seem to be getting worse rather than stabilising. I have had the strain identified and told that IV would be better for that particular strain but as a last resort.

  • Pete takes either Doxycycline or Azithromycin and has done for some years now. They are very good at keeping infections at bay and he also has another antibiotic if he does get an infection. He has only had IV used on him in Hospital. I agree with Sohara get in touch with the BLF on Monday and they will do their utmost to answer any questions you may have.

    Wishing you well. xxxxx

  • Thank you, I appreciate your reply.

  • I have been taking azithromycin since February with good effect, but I am keeping my fingers crossed the effects wont wear off. xx

  • Thank you, I appreciate your reply.

  • I've been on Azithromycin for 2 years now, Monday, Wednesday and Friday. I've had Doxy and Amoxicillin 500 in the past. Tazocin for 14 days IVs, part in hospital part at home. Consultants won't recommend rescue meds any more, they say its a waste of time as i will always present with Pseudomonas. Although I'm just finishing a course of Doxy for sinus infection.

  • Thank you, I am on four of these tablets a day. I appreciate your reply.

  • my last hospital visit was an eye opener it was found pseudonomas and the 20 flare ups I had this year were due to my body rebelling against any antibiotics so they are treating me as an outpatient in my home first with a strong IV antibiotic for 2 weeks but if that fails it will be 2 weeks in dock

  • Thank you, I have been on four a day for nearly three years, would kind of welcome giving the IV a go.

  • clearly you may benefit from this attack of treatment as well has anyone done a sputum sample on you yet as this is the first step to finding whatever is attacking you.

  • Helenamay, It sounds like it would be a good idea to have the IV to clear the present infection right up, then perhaps try Azithromycin as a long term the 2 you are on don't seem to be working

    Most people who can take Azithromycin ( there are side effects) are really happy with it...for me it is like a miracle drug

    I was pumping in antibiotics at an alarming rate for the past 10 years or so ( before that it was mostly only 3 times a year) so I can hardly believe that 3 little tablets a week are keeping me infection free..a true miracle...and like all the others on Azi, I just hope it lasts

    Perhaps talk to your consultant about it.....

    My consultant said its the last step before IV antibiotics for 'normal' treatments now just do not kill the bugs I have become immune ( mind you I have been on them since the NHS started giving out antibiotics, and that is a LONG time now)

    Let us know how you get on

    Love Sohara

  • Helen, sorry I didn't see this post previously. I don't have the infection you've mentioned, but lots of other awful and unusual ones. In Sepember 2015 I was colonised with Pseudomonas and in November with Achromabacter. Four months later, I still have this bug despite 20 days in hospital on IV Meropenem. Over the years there have been many periods when I wash on rotating antibiotics all of the time.

    I can't understand why you haven't had IVs, unless they think you might be susceptible to infections you pick up in hospitals.

    I'll be seeing my consultant next week to discuss treating the Achromabacter. But this time, I am we'll prepared for the consultation. I have read and googled extensively and now have a much better understanding of how it should be treated. I would give the same advice to you Helen, read and research so you know enough to discuss treatments with your consultant.

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