Tinnitus and hearing loss from azithromycin

I have tinnitus and an approximate 10dB hearing loss from Azithromycin. I was told to not listen to my tinnitus. Try and find any other sound to tune into. If there is nothing else around make a sound, or put the radio on, anything to distract you from listening to it.
I also have a ticking clock in the bedroom for when there is silence. It was explained to me that the tinnitus is your brain "filling in" the loss.
Funny just writing this and mine is there reminding me!

I have been on Azithromycin and Ethambutol for a month. I have developed ringing in my ears ( very upsetting); and my cheeks get bright red. I let Dr Swenson know via portal and will see what he says.
It scares me….It’s bad enough having Mac, to have to deal with this complexity now; especially because of the length of time needed to be on the antibiotics. Catch 22…..the meds that could eradicate the Mac could be disagreeing with me.
Please , anyone , share your experience on this if possible. What do we do if we can not handle the antibiotic side effects? Lousy spot to be in.

I was on the big 3 for about 6 months when I woke up one morning with tinnitus and later found out I also had hearing loss (they seem to go together). I was able to see my doctor right away and he stopped all of the drugs; he said that the side effects were from Azithromycin. That was just over 4 years ago and neither has improved.

I found a new doctor with more expertise in NTM and I’ve been doing airway clearance ( with 7% saline twice a day, aerobika, huff coughing, etc) for the last 4 years. I’ve been able to remain stable since then. My sputum tests are better (lower bacteria count in samples) now than they were after 6 months on the drugs. I’m hoping that this continues to work for me until some of the new drugs specifically for NTM are on the market.

Hoping for you that the medications works out better for you than they did for me.

hi Kathy, do you have bronchectasis also?
I'm not sure why I have itching, red cheeks , and sometimes eyes burn and sinuses.....I'm going to go to an ENT and Dermatologist to rule things out I guess.
My dr feels that the ethambutol and azithromycin will prevent me from getting worse......so I'm torn. Inebulize 2 x daily, and for the most part I don't think I have any symptoms from the MAC and Bronk.

the itching etc sure sounds like side effects to me!

Irene…do you think I should try to deal with it, or stop the azithromycin? It’s damned if you do and damned if you don’t. My hope of getting rid of the Mac is to use the azith for at least a year. I hate being in this spot.

I do have bronchiectasis.

I had no itching or red cheeks while on the meds. I’ve had sinus issues (thick secretions, post nasal discharge/sinusitis) since being on the medications and these did not go away when I stopped the meds. The ENT attributed sinus problems to inflammation in my lungs and therefore entire respiratory system; he suggested nasal steroids which I used until I started getting nosebleeds. I gave up trying to figure this out but it seems to have gotten a bit better over the years.

It’s a tough call when your doctor advises a course of treatment and you get side effects or concerns about whether the medication is doing what it is supposed to do. I needed to find a doctor who specialized in NTM and I am so grateful that there was one near me. The big 3 did nothing to reduce my (mac) bacteria count or prevent me from getting worse. Some people on this forum suggest getting a second opinion/ seeing someone who specializes in NTM but that isn’t always easy. My first respirologist refused to refer me for a second opinion but fortunately my family doctor did and fortunately the specialist kept me as a patient. It worked well for me but that’s a decision you have to make. I wish you courage and a bit of luck navigating the health care system when it comes to dealing with this disease

Bon, I think you should talk to your doc before stopping the meds. I can't remember if your MAC has cavities? That makes it trickier to treat successfully.
What airway clearance are you using? Maybe you can convince the doc that you will be really, really faithful doing it for 6 months and then have him retest sputum and do another CT on your lungs? Some people hare have been successful in reducing MAC levels and healing lungs, but it is an every day 2-3 times a day therapy - so it can be time consuming.

Maybe worth a try?
Sue

My doctor told me many years ago to get a sound machine to leave on at night. I have had one for many years. You get to choose the sound you like best. My tinnitus gets really loud at times, but I'm so used to it that most days I hardly notice, until it gets extra loud. I'm lucky in that mine sounds more like a swarm of locust than ringing; so much better than the ringing, which I rarely get.

I'm usually able to ignore mine - I do use sound at night when it gets bad.