(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I can't offer on alternative meds, but I have been seeing an ophthalmic surgeon twice yearly for decades. I was born blind in one eye and have cataract and glaucoma in both eyes. The OS is aware
I'm on MAC meds and after 15 mths on ethambutol, there is no change in my good eyè. If you are not already seeing an eye specialist, then it may be worth getting eye checked. Wishing you all the best. J

Thank you so very much for telling me your experience. I am seeing a Neuro-Ophthalmologist on Monday and saw a second Ophthalmologist (Sarcoid specialist) last week. Thank you kindly for telling me part of your experience.

I want to take part in ankylosing spondylitis in the Bones and Joints group.

I find it difficult to find quantitative data on Mac med side effects.

I am also unable to find quantitative data on life expectations for untreated cavitary Mac.

I also have IPF, so I want to avoid useless treatment for Mac if my IPF will affect my health sooner.

There is little quantitative data on the side effects of MAC antibiotic treatment because 1) the population of patients and treating doctors is widely dispersed, 2) there is no routine mechanism in our country for reporting side effects from medications, especially in the case of multi-drug therapies and 3) if you ask any practitioner, there are many "silent sufferers" and "silent quitters" when it comes to taking medications. There have undoubtedly been small scale studies, which you can probably find with some diligent research. I often look to reports from the NIH as a starting point.

Here is what the Cleveland Clinic has to say about life expectancy with cavitary MAC, with or without treatment, "Approximately 1 in 4 people with weakened immune systems who develop the cavitary type of MAC lung disease die within five years of the initial MAC lung disease diagnosis. Earlier detection and treatment drastically minimize the long term risks. (https://my.clevelandclinic.org/health/diseases/22256-mac-lung-disease)

And here is what they have to say about IPF, "Some people live only months after a pulmonary fibrosis diagnosis. Others live several years. Many factors affect your prognosis. Even your provider can’t predict some of these factors." And the American Lung Association says, " When you do your research, you may see average survival is between three to five years. This number is an average. There are patients who live less than three years after diagnosis, and others who live much longer."

If the MAC is treated, it will help preserve your remaining lung tissue longer, hence giving you more good time... and the decision to treat MAC is not irreversible. If the pulmonologist recommends antibiotics, you can try and see how you tolerate them. If they are too tough on your body, you can always stop them.

So it seems you are in a spot where some really hard decisions need to be made. Are you seeing a pulmonologist you can talk with? Do you have someone who can accompany you to appointments and serve as your recorder, so you can have good notes to review later?
Sue

I am in the care of a good pulmonologist, who agrees on wait and CT track my condition for the time being.

I have had IPF for five and my FVC is almost normal, but my Dlco is 45%

My last CT showed no fibrosis progression and slight MAC 4.3 cm cavitary change.

I feel perfectly normal except for limited Spo2 response. I have almost no phlegm discharge and no cough.

Thanks for the research citations. I also found the same material. No one seems to add to the information. What about all the cavitary MAC patients who cannot tolerate meds. What can they expect?

I was diagnosed with MAC a year ago. It took months to get a robotic bronchoscopy to confirm Mac, and not cancer.

I am 82 so my time-line may be different from a younger person.

I am researching possible bacteria phage therapy. So far it looks to be impossible to get phage treatment unless you fail all other treatments, even if the side effects are life altering. Meanwhile, I cannot find a single report of any ill effects caused by phage therapy. Usual idiocy.

If I were in your lungs - I would be contacting the bacteria phage study for possible inclusion. Your accompanying conditions could add a great deal to their knowledge of phage treatment for those not good candidates for the antibiotic regimen and make them more likely to include you.
Sue

Would Mayo assist you in making this contact?
Karen

Hi. I have not logged in for a long time and see I have a lot of catching up to do. I live in Tucson AZ - dry climate. Here are some points that may be helpful/encouraging to others:
My mother who also lived in Tucson was diagnosed with MAI/bronchiectasis at about age 75 in the mid-1970’s, was treated with the standard things at that time, and lived until she was 89. Periodically she needed antibiotics to quell side effects and the last I would say five years of her life she needed oxygen at night and then the last year or so 24 hours.
I was her caregiver and developed MAC/MAI/bronchiectasis in 2012 diagnosed by bronchoscopy. I went through the azithromycin/ethambutol/rifampin routine for a year and a half. Never developed eye issues but did see eye doctor every 6 months during and follow up to be sure. Quit the rifampin part after I think it was 9 months because with each dose I developed a fever of 102-3 and felt like I had a major flu. This put my disease into remission and the CT scans have confirmed this status.
I have been rx’d azithromycin prophylactically when I have contracted the flu or pneumonia given my bronchiecstasis. I have contracted covid three times and took paxlovid once it was available the third time this past January.
I now plan to read and catch up to understand eg the use of saline that I noticed.
I am glad this group is here. I know my lungs are not as strong as they used to be.

I don't know, Mayo is not part of this phage research as far as I know, but here is how to contact them to find out:
http://mayocl.in/1mtmR63
Sue