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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Could you give me an update on how you are doing now and about your treatment journey. I have been recently diagnosed with MAC and will be starting my antibiotic regime this month. I’ve read a lot and am scared. Any thoughts would be appreciated. Thank you. Terrie
Replies to "Could you give me an update on how you are doing now and about your treatment..."
@dglaude
I was Dx in 2015 after 3 bouts of pneumonia in a 12 month period. My doctor at the time prescribed the BIG 3 after only 1 sputum culture.( A BIG NO NO) You need 3! I have the nodular MAC due to GERD aspiration!
Long story short, my body could not tolerate meds, lost 40 lbs. in 3 months. 😩I was already thin. Changed doctors. New doctor said for me the cure was worse than the disease. He prescribed pulmonary rehab and I have built up my 02, gained
back 20 lbs. and have great energy.
Every person is different but attitude and gratitude make a big difference in your overall health. When you read posts you will notice how some do EVERYTHING and others are not quite as vigilant. I refuse to allow this Dx to rule my life. I do not cough, cannot produce sputum, and overall as my 2nd dr said...”You will die WITH MAC BUT NOT FROM MAC.”
God bless!
@dglaude I have been on the BIG 3 since November 2017. I have not had too much trouble with them. I take them on an empty stomach. One hour at least (usually more) before meals and at least but usually more than 2 hours after a meal. I plan to stay on until June 2019 when my 18 months will be completed and depending on how my next CT looks.
@dglaude I started last year and was scared too about the disease and the drugs, very scared. But it is okay, please believe me Terrie. In the end, I decided to go ahead and give them a try.
Just make sure you get baseline blood tests, hearing tests and eye tests. Then have the eye tests and blood tests every month for at least the first few months to monitor how you are going.
I've had drug side effects from the Big 3, some difficult but mostly not too bad overall, and have kept changing my life around to manage them better.
We are all in this together Terrie, and as you can probably tell from the posts on this forum site, we really help each other out. Hugs to you and good luck, Annie
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I have stopped all.treatment
I feel the side effects are too bad
I tried the BIG 3 and the doctor wanted me to.start me on the Akyrace inhaler
Too hard on my body
My hearing is constant in my right ear from the BIG 3, next would have been my eye sigh
I have said no and feel fine for now
I wish you good luck in your decision