Starting Ethambutol

Posted by healthybon @healthybon, Jul 25, 2023

Hi Everyone,
I am starting Azithromycin and Ethambutol…this is what Dr Swenson is having me do.
My question is as follows, to those of you who are taking Ethambutol.

I had my eyes checked by my Opthomologist…per Dr Swenson. A baseline was noted for certain things, and I am to have my eyes checked every three months. One of the side effects could be ocular toxicity/blindness. Dr Swenson said that is why every three months and/or if I notice the slightest unusual thing going on with my eyes I am to stop the medicine. I assume that all of you who take this drug were instructed similarly to me.
How do you feel about this, what is your opinion etc etc. Please respond. I’m not sure how to think of this…thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

healthybon | @healthybon | Jul 26, 2023

Hi Sue, I want to thank you a million times over for sharing your knowledge with me and helping me ever since I have joined the Mayo blog. You are a peach!!!!

barbfred | @barbfred | Jul 26, 2023

In reply to @healthybon "barb...thanks for your input. I'm glad you are symptom free.....did you ever have symptoms in the..." + (show)

Bon, I had pneumonia starting in March 2022 and have pansinusitis also. My ct scans showed tree in bud nodules. My sinus ct scans showed blockages. I was on levofloxacin most of that year with no improvement but stable CT’s. The bronchiectasis showed up on those scans. I did have shortness of breath and coughing then. I saw a pulmonologist in June 2023 and got my MAC diagnosis. I saw an ENT also and had sinus surgery to remove polyps and blockages in December 2022. That helped the shortness of breath and coughing. I’ve read that bronchiectasis is sinus driven. I feel much better so when I saw the ID Dr. she agreed to doing a ct in 6 months and waiting on meds. I nebulize Albuterol 2x a day followed by using an acapella. I take mucinex also. I use a Navage for sinus rinses twice a day and fluticasone spray every night which I have been doing for years because of the sinus issues. Barb

healthybon | @healthybon | Jul 27, 2023

In reply to @lauraadam2425 "Hi, I was on the big 3 as of 8/22 and in 4/23 I failed 2..." + (show)

What did your dr replace the ethambutol with?

dlynn1210 | @dlynn1210 | Jul 27, 2023

In reply to @sueinmn "If you notice anything unusual in between, CALL the doc. "Silent quitting" of medications is one..." + (show)

I definitely agree with you to never take yourself off any med - to contact your doctor to discuss any changes in sight or hearing. With that said, not one doctor, my primary care doctor who diagnosed me after a sputum culture, or my pulmonologist he referred me to, ever mentioned having a hearing or vision baseline because the meds could affect them. We have regular vision checkups and our eye doctor knew which one when he asked if on any new meds. My sight has been affected slightly - now 30/20 corrected still good but my hearing has taken a hard hit. As individuals what affects one may not affect others and that is why it is important to get baselines with regular checkups.

barbdk | @barbdk | Jul 27, 2023

I’ve had MAC and bronchiectasis for over 7 or 8 years (thanks cancer!). I was on ethambutol, azith and rifampin for over a year after initial diagnosis. I also had aspergillosis. The drug cocktail was pretty intense. I didn’t know about the possibility of vision loss at first, then a friend with the same diagnoses and on the same drugs lost her sight. It happened quite suddenly and was of course devastating for her. Sadly she passed away from her cancer about 18 months later. I’m followed by Mayo ID and pulmonology and we have taken a watchful waiting stance. If I need to resume treatment for my cancer (MM) then I will also need to resume treatment for my lung infections.

lauraadam2425 | @lauraadam2425 | Jul 27, 2023

In reply to @healthybon "What did your dr replace the ethambutol with?" + (show)

He hasn't yet. I remain on azithromysin and rifampin. I had another 3 sputim cultures done and he is waiting for the results as to whether to change my meds as I will have been on them for a year next month. I am playing the waiting game.

Renee | @rchildress | Jul 28, 2023

From your comments I am just not willing to risk my sight or my liver so still just on azithromycin and holding strong. This information is always so helpful.
Thanks everyone.

healthybon | @healthybon | Jul 29, 2023

In reply to @rchildress "From your comments I am just not willing to risk my sight or my liver so..." + (show)

hi there is your mac reading improving from just taking the azithromycin?

Renee | @rchildress | Jul 29, 2023

In reply to @healthybon "hi there is your mac reading improving from just taking the azithromycin?" + (show)

I am taking all kinds of vitamins and supplements but I can tell the azithromycin is working because I take 500 mg on Tuesday, Thursday, and Sat and by Monday I am dragging then when I take it on Tuesday I start feeling better again. Apparently it is doing something.