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MAC advise
Hello everyone
Its been while since I wrote to you all. I wanted to get some thoughts on your experiences after taking the meds and how you did.
I have been taking the 3 meds for MAC now for 9 months and my sputum is still positive. I have no major side effects but I feel exhausted all the time and not well.
My ethambutol was increased last month. I just feel like the meds are not working. I thought since they said I was mild to medium infection that it would clear it up. I guess I wasn’t as mild as they thought. My lung ct are not cleared either.
I do albuteral, saline 7% on my nebulizer and a flutter valve . I really do not see much help getting my sputum up.
My infectious disease doctor wants to send me back to Duke for another opinion. Don’t know about that. I was thinking maybe getting her to get me an appointment at Jewish health hospital for an opinion.
Would like to hear your thoughts. I am at a crossroads and need help.
Thank you all
Miriam
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Hi guys,
I'm first time here . I started Arikacy 2 weeks ago, then read on this site that Saline is used for airways clearance.
Could you tell me, if you nabulize with saline, how do you disinfect it. My pulmonologist's nurse said it should be only washed with soapy water. But Arikayce nebulizer is sterelized. It is not logical to me. How do you disinfect Saline Nabulizer ?
HI guys,
I'm new here here. Don't now exactly where to post stuff.
I just started Arikayce 2 weeks ago and found out that Saline is often used alongside. If you use a nebulizer for Saline, how do you disinfect the Saline nebulizer?
I need info on amikacin. I won't take it because my doctor states a side effect is "hearing loss". Has this happened to you?
There is a thread you can go to. Try the words: Sterilizing Nebulizer........ in the search area. If that isn't enough you might try different statements/sentence to find more about it all. Hope this gets you to all that has been posted previously.
Barbara
Your story feels similar to mine. I was on the Big 3 + several others and Amakacin. I too could not get a negative sputum and was told MAC was slow but, for me if started progressing. I tried to get to a Jewish but due to altitude was told no. I then started looking into transplant and my life changed. I am breathing and all equipment stored away or given away🙏🏼🙏🏼
I only took this medicine for one month. Couldn’t continue because i could not afford it. I would continued but i didn’t qualify for the program they had. I did see any side effects while on it. Sorry i couldn’t help. Miriam
Don’t understand 🤔
Hi, I am new to the group and just about to start on the three antibiotics. Does anyone have helpful hints about the timing of taking the drugs and about good probiotics. I thank you in advance.
Hi. I tecently had my hearing checked. I’ve taken the Big 3 for over a year and a half and I have had no problem with my hearing.
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2 ReactionsHi, welcome! There has been quite a bit of discussion here about probiotics. You might try a search for "probiotics" and also try starting a new topic with your question -- that way more people will see it & know what it's about.
I'm in the 12th month of treatment with Azithromycin, ethambutol and either a placebo or Arikayce (clinical study med). I take florastor at my GI doc's recommendation. I have not had gi side effects other than very mild nausea at first. Florastor has been studied for effectiveness with antibiotics. It's more expensive but I decided it's worth it.