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Moxifloxin- anyone tried this?

Posted by westcottkm3040 @westcottkm3040, Jan 16 9:18am

So… as the saga continues. I’m currently on the big 3 for the third time in 8 years. MAC subsides for a bit, but always comes back.
So this time started 8 months ago. On the big 3. Getting no where so doc added clofazimine but not getting much progress so is debating adding a 5th med of Moxiflaxin. Wondering if anyone has taken and what that’s like?

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notnancy88 | @notnancy88 | Feb 9 10:49am
In reply to @mokie2441 "To Wescottk-- I am in nearly the exactly same boat as you. I've been on the..." + (show)
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To Wescottk--

I am in nearly the exactly same boat as you. I've been on the Big 3 for a long time, they added clofazimine, and I was on inhaled amikacin for about a year.

They think I have several strains of MAC. After a year on amikacin, they said I was "resistant" to it, but they think one strain may not be. I am not having trouble with clofazimine, but it hasn't helped as much as I had hoped. Same with amikacin (slight hearing loss in upper frequencies).

Now they want to try moxifloxacin.

I read that moxifloxacin is about 29% effective for difficult-to-treat MAC. Beyond issues for the tendons (Achilles, hands, etc.), it may have quite a few other side effects (from what I've read). I'm not a doctor, so I'm just passing this information garnered from online sites along so others can do more research or report their actual experience with it.
1) It can cause neuropathy, which is nerve damage that results in numbness and tingling (hands and feet?)
2) It can affect the CNS, resulting in dizziness, headaches, insomnia, confusion.
3) It can affect the QT interval of heart (though this is monitored carefully with ecg screenings)
4) It can cause mental health issues, including anxiety and hallucinations.
5) If you have heart issues, it can elevate the risk for aortic aneurysm.
If anyone has taken it, how long? What was your experience?

Best regards to all.
Mokie

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@mokie2441 I took it for a short time when my m. Simiae popped after a Bronch. Simiae was my very first diagnosis and I chose NOT to treat it since I was symptom free. I was unable to stay on the Moxi and Sirturro due to terrible side effects. It’s funny since Levofloxacin does not affect me. I couldn’t walk 20 yards.

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mokie | @mokie | Feb 13 12:39pm
In reply to @namd "How are you feeling while on the big 3? I never thought that my NTM would..." + (show)
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How are you feeling while on the big 3? I never thought that my NTM would return. Good for you being on treatment for a 3rd time. I am trying to avoid going on the antibiotics for the 2nd time. It took me about a year to get the side effects out of my system. Then MAC returned. I could not tolerate the meds very well but I stuck with it. Daily meds are tough on your system. I was on moxi had side effects and I was nervous I still get unusual feelings in my tendons. As long as you are monitored it should be fine. Everyone is different some people experience very few side effects. Good luck

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@namd

Hello, and thanks for your sharing information.

Was the Moxi treatment negative enough for you that you would not do it? For example, was the nervousness really bad?

Thanks for any insights,
Mokie

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westcottkm3040 | @westcottkm3040 | Feb 13 1:15pm

I’m not finding the side effects that bad. Some gastrointestinal issues. But had some of that with all the other drugs. Fatigue as well. But I have advanced BE and low pulse ox. So hard to tell what’s what at this point. Will do a sputum test in April. So fingers crossed it’s doing something.

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namd | @namd | Feb 13 3:49pm
In reply to @mokie "@namd Hello, and thanks for your sharing information. Was the Moxi treatment negative enough for you..." + (show)
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@namd

Hello, and thanks for your sharing information.

Was the Moxi treatment negative enough for you that you would not do it? For example, was the nervousness really bad?

Thanks for any insights,
Mokie

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@mokie2441
Hi there, I took it as I knew no different at the time. I had done very little research when I was disgnosed with NTM but I would not take it again.
Antibiotics affect us all differently. I was not taking probiotics etc and I had lost my appetite and a lot of weight. I think moxi messed with my gut. There are alternative antibiotics within the big 3. Speak at length with your consultant. Good luck

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