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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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Hi, my dr put me on the big three and my body couldn't take them. I was sick as a dog! He is now suggesting Arikares. What I have read scares me! Has anyone had any experience with taking it? Thanks!
My mother who has MAC was placed on Aricayse and could not tolerate it. Now her infectious disease doctor placed her on Amikacin 1/2 the dose , diluted and only 3x week. Done via nebulizer. He consulted with Jewish National Health in Denver about this. So far, so good! There are options. She also still takes Arthromycin and Ethambutol.
Probably helps if we’re able to accept and adapt to the challenges of existential reality. Offered as I prepare to “hose up” to the nebulizer. I shouldn’t complain; I’m probably “over entertained” if anything. Don
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1 ReactionJust to follow up. I have an appointment at duke on Jan 10.
Hopefully i will get a better understanding. My concern is the symptoms i am dealing with fatigue, breathing issues, night sweats, chills/fever. My breathing has gotten worst since I started getting positive cultures especially when i walk up hill or just walking up and down stairs. This is a hard decision waiting till it gets worst to treat seems not right. Would appreciate anyone thoughts.
Thanks
Miriam
Thank you for replying. I couldn't tolerate the Ethambutol. The only one of the "big three" I can handle is the Arthromycin. I live in southern California and after finding this site I'm beginning to think the doctors here are not very familiar with MAC.
This is such a difficult disease to treat and everyone responds differently. A mentor on this site advised us to press into our Infectious Disease doctor about collaborating with Jewish National Health in Denver. We found out he does! Finding good doctors is key. Good luck and don’t give up!
Thanks for sharing about your doctor collaborating with NJH. I talked to my primary, and she said she only refers me to docs and other professionals who "play well with others" even if they are outside her system, because that is the way to get the best care. Being in MN, we have a lot of people who connect often with Mayo, but also with NJH, Stanford & others as needed.
And this is a good reminder to "be your own best advocate". You might not be able to travel to Mayo, NJH, etc due to your health or insurance coverage, but you sure can ask your doc to consult with the best!
Sue
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1 ReactionMiriam
If you are having physical symptoms from the MAC, it is most likely time for treatment. The doctors have to tell you all the scary stuff about treatment and you may be more likely to hear from the people who have had problems with the medications. I have been on treatment for over two years and it has not been easy- some side effects, lots of doctor visits, labs and general inconvenience but it has not stopped me from functioning and living normally. I suspect your symptoms would improve with treatment and you could even be one of the lucky ones with a good response and few side effects.
You and others might be interested in a recent article which suggested that the time it took for cultures to grow MAC was correlated with the bacterial load in the lungs and thus the need for treatment
https://www.atsjournals.org/doi/abs/10.1513/AnnalsATS.202107-765OC
Their cut off was 10 days - shorter times predicted need for treatment. e.g. I was at 4 days when I started treatment and now much longer or negative. If you have this information about your cultures, it would be another piece of data to consider
Good luck and make sure that if you start treatment you start one medication at a time to let your body adjust and to tell which is causing any side effects. Also, expect that the GI side effects and fatigue will be worst in the first month or two but often improve after that
Thank you so much for this info. I am so nervous about the treatment but your info has helped. I will ask and bring up all this information when i see the doctor at Duke. The fatigue and now the breathing issue is worrisome to me. Its been really helpful to be in this group. Thanks again. Will keep you updated.
Miriam
I have been on Arikayce for 2 months, barely tolerating it. Cough is sometimes out of control. Never had this issue before. Also on nebulizer with saline and albuterol. Wondering if anyone else has had problems tolerating Arikayce.