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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
Replies to "@ursala7 Ursula I googled a question about the drugs you were on, asking which is most..."
@mokie Thank you so much for taking the time to look this up! I do think you may have something here, and that my issues could be related to high uric acid. I think I'll set up an appointment with my primary care doc and address these issues - have a scan on my tailbone and spine and check my uric acid levels and other labs. My husband just thinks its protruding because I've lost my butt muscle and 14 pounds during this past 8 months. Between that, the stiffness and the tender elbows I wonder if I'm being affected by the Ethambutol.
I am eating red meat yes, at least twice a week - not much sugary drinks. I keep trying to eat animal protein to keep my strength up: I rotate chicken, tuna, beef. And any veggies I can get down. A little fruit and yogurt also. Hardly ever pork. I don't know what stage or degree of involvement your BE is, but mine is everywhere. I have a lot of mucus all the time. I don't have the high fevers that I had when pneumonia kicked all this off. I think there's just so much lung damage, and such a large volume of MAI, it's going to be hard to eradicate the infection. But we'll see if Mayo clinic suggests something different - it's a long 7 weeks until I go there. You are very kind to look that up for me - I didn't see the info you sent on my general search, so I'm glad you sent it. I wish for you (and myself) that our infections could be stemmed. And mostly that we can someday feel better. Take care,
Liz
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@mokie May I ask why you continue the regimen if it is neither curing nor suppressing your infection?
You certainly fall into the category of "refractive NTM" (not responsive to treatment.)
Have you considered seeking treatment at National Jewish Health?