Gentamicin

[cat50]

I have Bronchiectasis and have had it a long time .I have a New Consultant and she has put me on inhaled Gentamicin one month on ,one month off ,which I have just started..My main concern is hearing loss which they say c an happen. .I wear hearing aids already which is a recent experience.My Consultant says It will be monitored but I’m still concerned about it.Has anyone else had experience with nebulised Gentamicin.?

[RoadRunner44]

Hi cat50, I am in the same position as you. I also suffer with bronchiectasis and have severe rhinitis linked to it which has caused deafness. Because of this I have to wear a hearing aid in one ear and waiting for an operation for grommets to be fitted in the other ear.

My consultant also wants to put me on one of the "mycins"....in my case its Azithromycin not Gentamycin. Apparently this medication is very helpful for suppressing the many bugs we bronchiectasis sufferers have in our lungs. My consultant explained the possible side effects to taking this antibiotic which was possible hearing loss which could be irreversible. Like you I was very worried and posted my concerns on this forum. A number of people responded. Many were very happy taking the drug with very few side effects. However others did, unfortunately, become deaf. So a difficult situation.

How can we know how Azithromycin/others will effect us personally? For the moment I have decided not to go ahead and take it and my consultant will review my situation again in August. I understand the situation you are in as we want to enjoy our lives as much as we can but the thought of being completely deaf is dreadful. Im hoping my consultant will come up with another solution when I speak to her next.

Sending you my best wishes for a happy outcome. Please keep in touch and let me know how you get on.

RR x

[cat50 in reply to RoadRunner44]

Thank you road runner.I really don’t want to lose anymore hearing.It scares me going completely deaf as I love music .I’m incapacitated a lot of the time physically from Bronchiectasis and music keeps my spirits up.I hope you find something that suits you .Sorry that you have hearing loss to.I was on Azithrymycin for a while but it did nothing for me.Hearing loss is in my family.I will-let you know how I get on .

[cat50 in reply to RoadRunner44]

Hi Road runner.I put this post on a while ago .I Have had three alternative months of Gentamicin and touch wood there is no Change in my hearing yet.My Consultant now wants me to take Colomycin the months I’m not on Gentamicin as I get chest infections the month I’m of antibiotics.I like you have rhinitis and I also have asthma. Are you doing ok or have you decided on azithromycin?

[RoadRunner44 in reply to cat50]

Hi cat50 and thanks for the follow up. I was scheduled to have my ear operation last month and ten minutes before going in to theatre my consultant decided it was too much of a risk as making an incision to release the build up could cause more problems to my lungs and bronchiectasis as bacteria could get in. As a result the operation was cancelled and I was referred back to audiology to have a hearing aid for the other ear. I was devastated to say the least. Didn't he read my notes about having bronchiectasis? What a waste of pre-op visits over three years! I was on colomycin for a number of years and it proved excellent killing off the pseudomonas in my lungs. I have been free of these bugs for four years now. Good news you are having good results with Gentomycin and no ill effects with your hearing. I hope the colomycin proves good too.

I have been very well now for many months so when I speak to my consultant later this month I will say I have decided for the moment not to take the Azithromycin. However, should I start getting infections again then I will have to reconsider.

Keep well and keep in touch.

RR

[cat50 in reply to RoadRunner44]

Thanks for letting me know about your health.Im glad your free of infections .Sorry you couldn’t have the ear operation that must have been so annoying as you will have prepared yourself.I don’t think any of them actually read the notes.I would love a a couple of months free of infections.I hoping the Colomycin andGentamicin will do that .I can only try.Good luck coming of the azithromycin.At least you will know if that kept you infection free if you get an nfection.But not taking any antibiotics is better.Let me know how it goes.

[Hidden]

I had nebulised gentamycin in 1999. No hearing problems but I had a really bad broncho spasm reaction to it which began about 3 weeks after I started nebulising it. Hardly any mucus but what there was was like glue. I could hardly breathe. I know about broncho spasm now and sadly have come to the point where I can't nebulise abs any more but they never warned me that this could happen. There are several others that they can try. Colomycin tobramycin, ceftazidime and meropenem. All newer and not as 'raw' as gentamycin.

[cat50 in reply to Hidden]

Hi LittlePom thank you for the information of the other nebulised antibiotics .I will discuss these with my consultant.What do you take now if you can’t nebulise.I found oral antibiotics on there own didn’t work for me anymore.

[Hidden in reply to cat50]

I work very hard at keeping exacerbations away by clearing my chest and staying well away from anybody with a chest virus which always encourages a bacterial infection in me if I catch them. Cipro works in me although it shows as inneffective in the lab. If I get an exacerbation from now on my con in Bham liaises with my local hospital. Their OPAT team will put a mid line in and I will do IV at home myself. We are all different.

[Hidden]

Unfortunately, all aminoglycosides - tobramycin, gentamycin, amikacin etc. - can cause hearing loss. My understanding is that it’s more commonly a cumulative issue, and one that’s more prevalent with IV use due to very little of the drug entering the bloodstream when nebulised, but that nebs can occasionally cause issues in persons that are particularly sensitive: they have identified a specific mitochondrial change that can be tested for that indicates individuals who are extremely high risk of ototoxicity as a result of aminoglycoside use. However, in reality over the very long term, repeated IV exposure tends to result in some degree of high frequency hearing loss and/or tinnitus for quite a few people regardless of whether they have the genetic predisposition.

My 14 year old daughter doesn’t have the mitochondrial change (she was tested a couple of years ago) but she does have congenital sensorineural hearing loss and tinnitus. The only reason they tested her was as a result of her hearing problems and the very frequent use of IV aminoglycosides: she’s had 50-odd courses of tobi since birth, each one lasting between 2 and 4 weeks, in addition to nebbing it every other month for 11 of the last 13 years. She’s under audiology anyway, so gets a hearing test usually once a year, but her team would recommend that happen if that wasn’t the case. They’ve also said to inform them if she ever gets prolonged tinnitus whilst an infusion of an aminoglycoside is happening. However, if the choice is hearing loss or rampant lung infections and damage, which is generally the case for people nebs are advised for, then it’s a case of weighing up the lesser evil. If it’s any reassurance, her hearing thresholds haven’t changed at all in the last couple of years.

[cat50]

Thank you Charlie G.So sorry your daughter has to go through so much at such a young age.II do have tinnitus but not that badly.When I wear the hearing aids it goes.We do have a few hearing problems in my family.But I’m no spring chicken so I expected to have a bit of a problem. Didn’t know I could get tested to identify a specific mitochondrial change.My consultant did say it was more likely to happen with IV’s.I will make sureI have frequent hearing tests . I Have had rampant lung infections for years.There’s always some bug lurking about.Supress pseudomonas and I get something else.

[Hidden]

I wear hearing aids too, and have tinnitus. I nebulised a hefty dose of gentamicin for 4/5 months continuously, about 5yrs ago. That was for serratia marcescens. I didn’t have any further hearing loss. The tinnitus became more noticeable, but after I came off the gent, it returned to its previous level after a couple of weeks.

Ed: many years ago I had IV gentamicin several times. Even that didn’t affect my hearing, but of course they were only two-week courses x

[LissacFrance]

My wife has ben on Azithro, 3x per week, for about 3 years. No noticeable side effects but it does keep bugs at bay. Only occasional need for Augmentin. Azithro also acts as an anti-inflamatory, not just antibio. Take care, stay positivee, Chris.

[watergazer]

Sorry I can’t help but what an interesting read about the drugs. Thanks x

[Alberta56]

When I was put on Azith 2 years ago, nobody mentioned hearing loss. Since then I've been prescribed hearing aids- coincidence? I shall keep a close eye on my hearing now.

[cat50 in reply to Alberta56]

I’m sorry to hear that.I wish they t would tell us what could happen.I have learned to check things out now.Has azithromycin helped you.? I did nothing for me.

[Alberta56]

I haven't had a chest infection for 2 years now, but who knows whether the azith was responsible for that.