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@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.
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@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