Starting Ethambutol

Hi, I was on the big 3 as of 8/22 and in 4/23 I failed 2 field view tests and my eye specialist took me off ethambutal immediately and 4 months later I was able to pass the tests. This is why it is so important to have your eyes tested every 3 months so things can be caught early. As you said you are regularly having your eyes tested so you should be ok, But if you suspect a change at any time get your eyes tested immediately. Good luck and it sounds like you have a great dr.

Laura, Thank you so much for sharing your experience with me about Ethambutol. I've written to my Doctor and we will see if he can come up with a substitute. Thanks. Bon

Hey Bon!
Yes, you need to have eyes checked every 3 months, also your hearing every 3 months, and blood work every month or two.. But I have been on big 3 for 13 months and all testing has been fine. If you notice any changes between checks, just go to doc right away.
❤️Dee

Bon - I am answering you here so others can also talk to you about their experiences with Ethambutol. I was on it for 18 months, over 6 months of that was every day. My eyes were checked every 3 months, and they were fine (and still are 4 years later) even though I already had glaucoma, it did not get worse.

Please realize that doctors warn us about potential side effects so that if they occur, we (and they) can react quickly. That does NOT mean the majority of people on the med have a problem with it. In fact, if that was the case, the drug would be off the market.

Remember, any substance we put in or on our body can have adverse effects. For example, I am very allergic to tree nuts, but billions of people worldwide eat them safely every day. I am allergic to sulfa medications, but it cures infections for others safely.

So ask the eye doctor what symptoms to be alert for, then note if you begin having them. At that point, contact Dr. Swenson's staff right away.

You can do this!
Sue

Hi Sue,
Thank you for answering so quickly. I have some thinking to do about this. I appreciate your telling me about your experience with Ethambutol. I am very torn about this issue. It’s not a happy place to be at the moment. The azithromycin agrees with me….no trepidation about that one…….I’ll see what Dr Swenson tells me when he receives my portal note today describing how I’m feeling. . He’s been fantastic..always answering my questions and just being wonderful! Bon

Hi, My ID Dr. does not use Ethambutol because of the risk and uses moxifloxin instead. I’m not sure if that is a good alternative as I have read that the Ethambutol is the important one but you could always ask your Doctor about it. I have bronchiectasis and Mac but I am symptom free at this point so I am not on the meds. I relate to how scary this all seems! Good luck!
Barb

Bon,
When MAC is diagnosed, the next step is to test and see which drugs it is susceptible to. Apparently your test showed Dr Swenson that you need to take both azithromycin and ethambutol. If you trust him with your care, don't you think it is wise to follow his advice?
Perhaps if you are really nervous, you could ask to have your vision checked every 2 months to earlier detect any changes?
Sue

barb...thanks for your input. I'm glad you are symptom free.....did you ever have symptoms in the past? Thanks bon

Funny you should suggest that because my hubby said the same thing to me last night! Every 2 months. And if I notice anything unusual in the interims....I will stop taking it.

If you notice anything unusual in between, CALL the doc. "Silent quitting" of medications is one of the main reasons antibiotic therapy fails. The doc will try to figure out something else. By the way, ethambutol is one of the top 3 drugs in effectiveness against mycobacteria, so using it presents your best hope of clearing the infection.
Sue