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@cacallahan and others on the meds for MAC/MAI --

There are at least 3 'standard' drugs that work in synergy with each other. I've been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.


1) THE NAMES OF THE DRUGS -- there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS - the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug - - and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI -- this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS -- per my pulmonologists at a teaching hospital (and I've written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn't matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS -- unfortunately, I've found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS -- I've had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you've been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D - get yours checked. There's a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don't understand. Become your own advocate for your care - knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don't take showers - just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!

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Replies to "@cacallahan and others on the meds for MAC/MAI -- There are at least 3 'standard' drugs..."

Paula, thank you for all that wonderful information. I'm just starting the<br />
three drugs and I have an even more specific question. I'm going to spread<br />
my three throughout the day but for instance, the three ethambutols each<br />
Monday, Wednesday and Friday...<br />
Can I do one in the morning, one at noon and at night or do the three have<br />
to be taken at one time. Same question for the 2 Rifampin pills...(and I<br />
only have one Azithromycin to take). Nan<br />

Hello e345l, (you really must tell us your first name .. e345l seems SO cold!)
Have you heard of the Leprosy drug or shot? Nope have not heard a thing about it! If you google it .. you merely come up things related to leprosy!

Hello Katherine, yes I agree my e345l isn't friendly!!! My name is Ellen.<br />
What I need to find out more about is, does the amikacin inhaler have a<br />
strong solution in it that one may feel nauseated?<br />
I know my doctor will answer my questions. It affects every one in a<br />
different way. One fears the unknown. Is it the sterilization part that<br />
gets bothersome? It could for me, especially if you have to boil water<br />
for extra cleanliness. I would like to hear your experience with it.<br />