Life Expectancy with cavitary MAC

Posted by mch (Marycarol) @mch, Dec 16, 2022

Just diagnosed with cavitary MAC (2 cavities at 1.6cm). Frantically educating myself. My pulmonologist agreed to let me “wait and see” for 6 months in response to my concerns about drug side effects, especially vision and hearing. But from what I’ve read so far, I’m now close to panic that delaying is a bad idea….that the meds are inevitable….and the potential for disease progression due to cavities is significant. I’m coming to terms with accepting the life impacts of the treatment and the realization this may be a life long battle due to high rates or recurrence. But I desperately want to know if my reality is I should take steps and plan for a much shorter life. I’m 66 now. Is this disease fatal? Does it reduce life expectancy? The only data point I have found so far says 5-year mortality is 25%! Never thought I’d wish for cancer as a better option. I’m afraid to know the answer, but l’m overwhelmed by fear at this point.

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irene5 Irene Estes | @irene5 | Aug 3 6:03am

In reply to @rstel7272 "I had a six month window about 3.5 years ago where I has no AB's and..." + (show)

And you are correct my friend. So what is the answer for us? Is there an answer? I think the best way to describe us all is having perseverance and doing the best we are able to stay positive. We do get a reprieve sometimes tis true, and that’s a good and wonderful thing. I think originally there were so few of us it was all considered “rare” but being as there are more and more of us I pray continued research will find more and more answers. In the meantime we have this place here to share. Praying for you always. Irene5

irenea8 | @irenea8 | Aug 3 8:52am

In reply to @drewinsac "Hi Rick, I was diagnosed 3 years ago with BE and my first infection was ecoli..." + (show)

Do you feel there are any lingering benefits from the IV antibiotics after those two weeks? Or do you go back to your usual symptoms? Or do you ever get a worsening of symptoms after the two weeks? How long did they keep you on the IV each time. Which antibiotics were used in those 6 times?

drewinsac | @drewinsac | Aug 3 10:27am

In reply to @irenea8 "Do you feel there are any lingering benefits from the IV antibiotics after those two weeks?..." + (show)

Lingering? No. After a week on IV I feel normal again. After 4-5 weeks, they take me off it and I feel great for the next two weeks. Then my coughing starts and get another culture. Then try another round of IV antibiotics. So that went on 4 cycles. Currently, after those cycles this year, went on inhalation amikacin and cipro (1 week) and remain on amikacin for a month. Doc said that my lungs have been colonized by PSA so much more difficult to get rid of.

irenea8 | @irenea8 | Aug 3 11:43am

In reply to @drewinsac "Lingering? No. After a week on IV I feel normal again. After 4-5 weeks, they take..." + (show)

4 to 5 weeks is a long treatment for IV. You may have done that at home instead of hospital. If they try another round shortly after the previous round that would surprise me. I do not know how anyone could tolerate that much without side effects. It seems like many people with Pseudo try the IV route without enough or any help. Then they end up with inhaled and oral. You might knock it back with your current treatment (hope so) but very doubtful you can "get rid of it". I had a similar experience as you with IV for Pseudo but only tried IV one time so far and only for 11 days. My improvement only lasted one week after the IV! And the improvement was dramatic during the IV.

drewinsac | @drewinsac | Aug 4 10:01am

In reply to @irenea8 "Do you feel there are any lingering benefits from the IV antibiotics after those two weeks?..." + (show)

Forgot the different kinds - merrem, cefepide, and a few others I cannot recall

drewinsac | @drewinsac | Aug 4 10:31am

In reply to @irenea8 "4 to 5 weeks is a long treatment for IV. You may have done that at..." + (show)

They put a PICC line in my arm and I changed it weekly or every 8 hrs. The IVs were probably a 3-4 weeks apart. I really didn’t have side effects as I always take probiotics. I am now back to orals and inhalation

lindabourassai | @lindabourassai | Aug 4 4:02pm

I have had MAC for at least 10 years; diagnosed 9 years ago at the age of 76 with the caveat that I had "probably had it for a long time." I could not tolerate the Big 3. I went to NJ Hospital for 10 days as and out patient and had every test possible. They only found GERD which is minor; told me to sleep on my left side and to nebulize 2 times a day. They also tested me for susceptibility to drugs which showed Clarithromycin and, of course, Azithromycin as my best choices. I have gotten much weaker, but then I am 85 now.