MAC Treatment: When will I see side effects?

Posted by wal6578 @wal6578, Oct 28, 2019

Started a little over a week ago with the "big three" for my mac lung. So far no side effects at all except the orange urine after rifampin dose. Appetite is great with no changes, no fatigue which I have never had even before started taking.

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@wal6578

Since I have been on the big 3 I have no more clearing of throat, absolutely no coughing and feel great but I have started experiencing some tightness in chest and mild breathlessness that I have never experienced. Still no fatigue, great appetite and can do all regular activities and tolerate exercise. Been on big three for two months.

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@wal6578 That's great news. Some people are fortunate not to have a hard time with the Big 3. Glad to hear your cough is gone. Maybe if the tightness & breathlessness persist you would want to report it to your docs?

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I developed tinnitus in January after being on the Big3 for a year. It's just in my left ear, so far. Also, it's not that bad so I'm continuing with the Big3. I've read that Clarithomycin is substituted for the Azithromyocin to avoid/lessen the tinnitus, but I'm not sure if changing out the two meds would lessen the effects of tinnitus and/or hearing loss. I'm reading some say yes, some say no. Opinions?

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@toni1132

I developed tinnitus in January after being on the Big3 for a year. It's just in my left ear, so far. Also, it's not that bad so I'm continuing with the Big3. I've read that Clarithomycin is substituted for the Azithromyocin to avoid/lessen the tinnitus, but I'm not sure if changing out the two meds would lessen the effects of tinnitus and/or hearing loss. I'm reading some say yes, some say no. Opinions?

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I also developed tinnitus. My doctor just gave my a weaker does of Azithromyocin. I still have tinnitus but it's nothing that I can't handle and I don't think my hearing has been impacted. I'd also be interested in what people think about changing out the two meds.

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I also developed tinnitus and hearing loss after 6 months on the big 3. This was at the end of last August (2019). I saw another specialist at the time who kept me off all meds and “prescribed” airway clearance (nebulizing 7% saline) and other measures. He said that he would substitute clarithromycin if I needed to go back in medication. He said it would not affect my hearing.

My ENT said I should not take clarithromycin as it is in the same family of drugs as azithromycin and could cause more hearing loss.

Does anyone have any experience with this? I am fortunate not to have to make this choice right now but I want to be prepared if/when I do.

Also, I recall that someone posted information about a supplement he took that helped to reduce the tinnitus- does anyone remember that?

Thanks in advance,

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@toni1132

I developed tinnitus in January after being on the Big3 for a year. It's just in my left ear, so far. Also, it's not that bad so I'm continuing with the Big3. I've read that Clarithomycin is substituted for the Azithromyocin to avoid/lessen the tinnitus, but I'm not sure if changing out the two meds would lessen the effects of tinnitus and/or hearing loss. I'm reading some say yes, some say no. Opinions?

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@toni1132 I have been on both meds and also have tinnitus in my left ear as well. Some days are better than others. It is not constant. I joke about it (even though it is definitely not a laughing matter) and tell my husband that, “maybe if I don’t answer, it will stop ringing.” I weigh that side effect with the hopeful outcome of taking either Clarithromycin or Azithromycin as part of this regimen. irene5

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@tinaesims

I also developed tinnitus. My doctor just gave my a weaker does of Azithromyocin. I still have tinnitus but it's nothing that I can't handle and I don't think my hearing has been impacted. I'd also be interested in what people think about changing out the two meds.

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@tinaesims Tina I have been on both. I prefer Clarithromycin but am on Azithromycin presently. There are studies out there about the effectiveness of one over the other. Personally, I feel since I have been on Clarithromycin less frequently, I believe I should be on that as it would be more effective in my mind’s eye. My doctor, however, wants me on the azithromycin so that’s what I’m on right now. Azithromycin bothers my ears and stomach more than Clarithromycin, but Clarithromycin gives me more flu like symptoms. Everyone is different. As an aside: Blessings to everyone on this forum for Good Friday and Passover as we celebrate this very special time of year without physically being able to share such a meaningful weekend in our lives. irene5

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@toni1132 @tinaesims @kathyhg
I started the Big 3 2 years ago and have always taken the Azithromycin. 2 hearing checks have always come back okay, but I do have ringing in both ears. I acknowledge it, but it doesn't really bother me.

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@toni1132

I developed tinnitus in January after being on the Big3 for a year. It's just in my left ear, so far. Also, it's not that bad so I'm continuing with the Big3. I've read that Clarithomycin is substituted for the Azithromyocin to avoid/lessen the tinnitus, but I'm not sure if changing out the two meds would lessen the effects of tinnitus and/or hearing loss. I'm reading some say yes, some say no. Opinions?

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@toni1132 I lost hearing in my left ear and got off the drug at my doctor's advice. That was ten years ago

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Did you get any of your hearing back? Sounds like hearing loss could be permanent. Tinnitus too.
I’m still hopeful though 🙂

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@tinaesims

I've been on for over a month and so far so good. I'm just waiting.

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I started 5 weeks ago and have nausea on some days. Now, I am upset because my teeth are discolored and I read that Rifampim can cause it. Afraid to go to dentist due to COVID. I am new and don't know how to post a question

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