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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Is there a difference between 7% and 7% (pH+)?
@sweethighland The PulmoSal pH+ has a pH of 7.4. Most brands of 7% saline have a pH of 5.86 to 6.60 Keep in mind that on the pH scale, a pH of 5 is 10X more acidic than 6. IMHO if one has a history of reflux especially upper airway reflux (like many of us with Bronchiectasis) then inhaling less acidic solutions is just better for your airways. Bill
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1 Reaction? What do you mean by sharing? You can share the link with anyone you would like.
Sue
Arikayce is recommended as an add-on to the standard treatment (Big 3) IF the patient has refractory/stubborn MAC. This is regardless of presence of cavities. MAC is considered refractory if the patient is on at least 6 months of standard treatment without achieving sputum conversion.
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1 ReactionFor some reason, I was unable to copy the link. It’s all good now.
Nana43 — you said after two months on antibiotics you feel 50% better. What symptoms improved — fatigue, coughing, mucus?
Thanks! Cate
Hi Cate!
Fatigue, fever, and overall feeling of “unwell” has improved for me. Don’t misunderstand- I still have fatigue but instead of days when I had to stay on couch all day to consistently working 1/2 day schedule at work. I also had fever EVERY day for a solid 8 months, now I have a couple days a week with no fever at all. I do not produce mucous AT ALL and never have. Dry cough is about the same. The medicine does cause some side effects that mimic symptoms too. The biggest improvement for me is that I can exercise now!!
I went over 6 months with little movement (and this was from a exercise junky that did 2 hour workouts!) and now am doing at least 30 minutes per day. So for me @ 58 years young, treatment is a no brainer.
Hope this helps!!
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3 ReactionsAfter only two months, that’s pretty good!
Was your lung function test normal before the big 3?
Have you had a sputum test since being on the antibiotics? It will be interesting to see how much your MAC load is down.
I was diagnosed two years ago with MAC. I have been on the three meds - Azithromycin 250 mg once daily, Rifamin 300 mg once daily, and Ethambutol 400 mg twice daily. I changed pulmonologist when it appeared his nurse was calling the shots - her sister had MAC. When I asked about another appt she said “We don’t need to see you, we know what is wrong with you.” We order our meds through Express Script and for the first time I had to get a refill order. It appears the number of times I am to take each has changed drastically without any sputum testing, lab testing, etc.
Did you find a new pulmonologist? And after 2 years on the meds, when have you most recently had a sputum culture and a chest CT to measure your progress?
Sue