← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@Paula_MAC2007

@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.

IMPORTANT THINGS TO KEEP IN MIND:

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!
Paula

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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
three drugs and I have an even more specific question. I’m going to spread
my three throughout the day but for instance, the three ethambutols each
Monday, Wednesday and Friday…
Can I do one in the morning, one at noon and at night or do the three have
to be taken at one time. Same question for the 2 Rifampin pills…(and I
only have one Azithromycin to take). Nan

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.
What I need to find out more about is, does the amikacin inhaler have a
strong solution in it that one may feel nauseated?
I know my doctor will answer my questions. It affects every one in a
different way. One fears the unknown. Is it the sterilization part that
gets bothersome? It could for me, especially if you have to boil water
for extra cleanliness. I would like to hear your experience with it.

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