Ethambutol

@sueinmn Are you saying that for six months you had to have your vision tested everyday? Daily visits to the ophthalmologist? Optical nerve issues?

@cpitts I have not had any bad reactions from the ethambutol or the Clofazimine. A slight skin darkening (tan) from Clofazimine but not very noticeable. Has your doctor mentioned adding Arikayce? It hasn't worked for me so far but there are many others on this group who have had their sputum cultures convert to negative within just a few months on of starting it. Thanks for the prayers!!

I don't know if this is helpful, but I have been on 400 mg daily of Ethambutol for years with regular checkups for my optic nerve (that is, every three months). I am told the optic nerve is healthy. Your doctor seems to want to give a higher dose, but less frequently. I wonder if spreading the drug out might be a better plan? I am not a doctor, but much of the dosage, the frequency and even the type of drugs given for MAC or MAC with BE is guesswork, it seems. Some get well one way, some another. But I say this to encourage you that ethambutol does not necessarily hurt your eyes. I share your concern about the drug, though.

Kind regards,
Mokie

@mokie Hello: I have been reading through past discussions on Ethambutol because of some issues that I'm having (may or may not be the ethambutol). I'm on the big 3 and Binsupri, so it could be any of these. I started Ethambutol (1200 mg, 3X a week) 10 weeks ago and after a couple of weeks I got a little numbness in my toes. I reported this to my ID doc at the 4 week point and we decided to keep me on it because this symptom seemed very minor. In the past month, I've developed a backache that is new for me and soreness in my spine and tailbone area. I have no idea what is causing this, but I do feel one of the drugs is doing it. You mention you've taken this drug for years, and your dosing schedule is daily, but low. Is this a maintenance/extension of the big 3 treatment? And apparently, you've never had any neurological issues.

@ursala7

Ursula

I googled a question about the drugs you were on, asking which is most likely to cause the problems you are having (toe tingling, spine and tail bone issues). Here is the response: "

"Ethambutol is the medication from this list most likely to cause spine/tailbone pain. While it is most famous for causing vision changes (optic neuritis), ethambutol can also cause peripheral neuropathy—nerve damage that frequently manifests as numbness, tingling, or a pins-and-needles sensation in the toes and feet. Additionally, it can cause elevated uric acid levels leading to joint pain (gout-like symptoms) or trigger drug-induced lumbosacral radiculopathy (nerve irritation in the lower spine)."

I have been on the big 3 early in my diagnosis (2015 ff), and then off it for a year or so, and then back on for most of the last ten years. So, I think I should say the ethambutol is an extension of my treatment. But I have been on it for almost the entire of the ten years, going on eleven.

Now, what's weird about my drug regimen is that I have almost no problems taking any of these drugs (for years!), but my NTM is not going away. It is slowly but surely advancing, growing trees and becoming cavitary. Though it is also true that some parts of my lungs some mildly improving (as CT shows this and the other issues). And they added clofazimine and amikacin and this past week, brinsupri.

Uric acid can be reduced by reducing any sugary drinks and cut back on red meat. Not sure you're imbibing those?

Perhaps there is another way to offset the negative imp act of the ethambutol, but I think a pharmacist and the id doctor need to think about this.

Kind regards,
Mokie

Hi, Sue

Thank you for your comment! I do not know what to do. I don't have much confidence in my ID doctor or my improving.

This past half year has been really hard as I realized I'm not getting any better. I am not doing much about the water issue, so my next step is to take care of the shower and kitchen sink as has been suggested through this site. I usually bathe, but I think washing dishes and cleaning is exposing me to NTM.

My ID doctor this past May wanted to put me on moxifloxacin and linezolid (both), in addition to the following which I am already on: amikacin, ethambutol, azithromycin, rifabutin, clofazimine and the 7% saline. These new drugs are strong against infections but both have quite a few really bad side effects on heart, CNS, anxiety, neuropathy, etc. I have been procrastinating while trying to figure out what to do.

Do you think I need a second opinion?
Grateful to you as I see you giving great advice.

Mokie

@cpitts Were you having vision issues, or was this a routine visit? My docs made sure I knew exactly the symptoms to watch for, to stop ethambutol immediately if noticed, and I had my eyes screened every 3 months while on the meds (incl 6 Mos every day). I'm still fine over 6 years later. There are other docs who prescribe alternative meds, but an ID doc should determine whether your strain of MAC is sensitive to one of them.
PS, my ophthalmologist was the doc of choice to see MAC patients in out clinic system.
I would ask my doc to explain why they felt you were at extraordinary risk and should not use ethambutol- like seeing changes.