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Update On Treatment of MAC
Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is 'old school' and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn't recommend treatment at all because 90% of the time, the MAC clears up on it's own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.
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@joan912 Joan, it sounds like he may have had it for years before it was caught. If he is not up to doing the big three antibiotics, have him discuss 'suppression' therapy; where he is given alternating single antibiotics. Maybe you saw my post about the ones I take. I posted it today. Some doctors do not like to treat that way, some do. It may be something he can discuss with his doctor. (I think it was you that mentioned he was not tolerating the BIG THREE?) In your opinion, do you think he is seeing a knowledgeable doctor? Please keep us posted.
I am new to this site but desperate to get help for my mother. She was a very young 83 year old when first diagnosed. Now 88 and doing progressively worse since being treated by a pulmonologist in Milwaukee where she lives. Currently she is on the ethambutol 400 mg , 2 tab daily, and azithromycin 250mg/ daily. She was on rifampin but had a very bad reaction as she is also on Coumadin. She also tried Aricayse for 4 months but could not tolerate it. We saw an ID doctor last week in Milwaukee as well. He just ordered another CT and culture. She also just started albuterol via nebulizer twice a day and it’s not helping much. We are wondering if going to Mayo would help. The pulmonologist says they wouldn’t do anything different. Any advice. She sees Dr. Gronski at St. Luke’s Hospital
When I was suffering as much or more from the treatment as from the infection, the ID doc was my salvation - after culture, he consulted by phone with National Jewish Health. Mayo, NJH, and a few other places are different - they are more willing to try the latest treatment models, and to treat the whole patient not just the lungs or infection.
In your place, I would try first to lean on the ID doc doing a phone consult with NJH about treatment choices for your Mom. (It might be easier on her than a winter trek to Mayo.) Failing that, it would sure be appropriate to seek another opinion.
How did the 2 of you feel about her ID doc?
Sue
Thank you for your response. Our ID is Dr. Kenneth Swanson. Hard to know since it was our first meeting. Seemed reasonable to get a current CT scan and culture before he can treat her. She has a difficult time producing sputum for culture. I will definitely ask if he would consider consulting w NJH. Thank you for your advice!
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1 ReactionIf she has difficulty producing enough sputum, they can have her neb with high-content saline (called hypertonic saline.) My pulmonologist's nurse used 10% - wow the crud that came up!
Sue
Thank you so much! Such helpful information, I will tell her.
Like you, I am confused about who will coordinate my care--Pulmonologist or ID? I really like my Pulmonologist and he seems willing to work with me and refer me to NJ or Mayo. The ID does not give me much time or discussion. I also do not want to go on the Big Three since there are so many new medicines on the horizon. Will probably go to NJ next year.
Unfortunately, I just learned that Dr. Levanthal has retired. Dr. Johnson has taken his place.
My team worked together- primary, I'D doc and,pulmonologist. I'D doc coordinated communication with NJH. Who could ask for more?
Sue
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1 ReactionThank you!