Connect
← Return to Starting MAC treatment with "big three" drugs: What to expect?
Discussion
Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.
Replies to "Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now...."
Cindy, this is truly a tough diagnosis to hear - all of us were overwhelmed at first, but also relieved to have a name for what was making us so sick.
So, you don't say what level of experience that your pulmonologist has with treating MAC, but it is a fairly rare disease, and many do not treat it frequently.
The standard protocol for treatment is the Big 3 three times each week for at least a year. There can be times, for example treating M.abscessus, when daily dosing happens from the start. I have a few questions.
Do you know which variety of NTM you have? Did the lung culture include colony count and antibiotic sensitivity testing? Is your pulmonologist working together with an infectious disease doc? Did you ask why you need the drugs daily?
If the answers are that the pulmo did not explain, I would seek answers there first, and if you don't get a good feeling, try Mayo or National Jewish Health in Denver or another lung center.
Because you are under treatment for RA, you need to confirm the compatibility with continued steroid and Levaquin use with the antibiotics. My daughter has been transitioned from steroids to a biologic plus Methotrexate to spare her lungs, which are scarred by lifelong asthma plus bronchiectasis (but no MAC)
Let me know what you have learned. After 9 months of treatment, I had to find a new pulmo who was willing tyto answer my questions and work with me, not dictate to me.
Sue
Connect
I also take Prednisone 5 mg twice a day and Levoquin 500 mg three times a week.