What is the average life expectancy of untreated mac?

Similar situation…taking the 3 meds, first month… but since they have NOT been an absolute CURE for many it seems that as long as my daily life is what I want I am thankful.
The doctor does not appreciate my request for just “keep the disease at bay” since “MEDICINE” doesn’t have a cure.
Be your own advocate.

You're right. My NJH doctor has not been happy since the get-go but has continued to work with my despite my non-compliance with the drugs (because they made me too sick to function). I am, however, willing to re-visit the whole situation if need be. I saw my ophthalmologist yesterday to get a baseline on my vision (for the ethambutol). I'm waiting on the hearing folks (rifampin) and Infectious Disease folks to return my calls. I agree, one must be her own advocate, but darn! Sometimes it's just overwhelming...I'm sure lots of folks can relate. I do appreciate your positive support!

I would like to remind everyone that there are ways to help keep MAC at bay and continue to live well without endless antibiotics for some of us.

If you are fairly ill already it may be worth it to take a course of the Big 3 to see how you tolerate it. Especially if you have pseudomonas , M abscessus, cavities, serious lung damage, fever or excessive weight loss, this can really knock down the amount of bacteria in your lungs and buy time.

Second, regular airway clearance with saline, plus rest,exercise and a healthy diet are a valid form of treatment.

This is what I have relied on for over 3 years after 18 months of the big 3 reduced but did not eliminate the MAC.

Would anyone consider this option?
Sue

Sue, when I was first diagnosed and before I found a specialty center for MAC and bronchiectasis, I could not imagine myself on the 3 drug regimen and for so long, when statistics for the cure rate were not very encouraging.

I was deemed a good candidate for a clinical trial, since I was treatment naive, and I enrolled in the 6 month clinical trial with Clofazimine only. I felt that, even if the results for me were not promising, I would at least be contributing in some small way and perhaps help researchers toward their goal of more effective treatments.

I did feel better physically, gained weight, and did well. Numbers declined but then came up again when the dose was halved for the last 2 months. I was grateful for and respectful of my doctor’s decision afterwards to enroll me in the 2 vs 3 drug open trial and am now on Azithromycin and Ethambutol. No ill effects yet, and I know that these drugs work more slowly than the Clofazimine. Mentally, I have accepted that I may not become sputum negative after 6 months, at which time my doctor will add the inhaled Amikacin. She said that it is a game changer. Many patients who did not convert to sputum negative on the Big Three are able to do so once adding Amikacin. This might be something for some of you to consider. Since is lioosomal, inhaled, and targets the lungs directly, it is very effective and helps sidestep some of the systemic effects.

I believe that finding a doctor whom you trust and who communicates with you is so important.

Yes, the drugs have side effects. You have to weigh how much better you feel physically as your numbers decline against the potential drug side effects. My doctor told me that they have new drugs in the pipeline. As you said, Sue, lung hygiene, airway clearance, exercise, rest, and a healthy diet will all help you fight your battle. The stronger you are, the better you feel, and it also improves your outlook and hope.

I have also read about new patient directed therapies that use the patient’s own immune system. There is hope. You might also have read about herbs, spices, and oils that attack or break down biofilms.

If you can avoid unhealthy exposures and maintain your overall health, you greatly increase your body’s capacity to battle this bug and others. A forum like this is so indescribably helpful because the disease is so different for each of us. Being able to communicate and ask questions that we may not always have the chance to ask our doctors is extremely beneficial.

If you are up to trying a new therapy and are offered the opportunity, consider taking it, if you are able to tolerate it. You may be able to greatly improve your quality of life and enjoy the things that bring you happiness. That is worth a lot.

Thank you for the great explanation. I am currently feeling quite healthy, but if that changes, I will definitely be seeking advanced treatment - not a return to the "Big 3". I have learned so much on Connect about the possibilities that exist - thank you for taking the time to describe your journey.
Sue

❤️

My thoughts exactly!

God Bless you. I feel the same exact way you do. I’m not willing to take that chance either.

Hello formergardner,
Your entry is very timely for me as I interviewed/tested yesterday for a new study combining the clofazimine, azithromycin, and ethambutol in one dose. I am also naive for any treatment. I am awaiting results and a decision of acceptance into the study. It is a 25 month trial, evidently international. I don’t have much more info about it other than that right now, but since I would have difficulty with the financial aspect of the “big 3” on my own, I would like to get into this nearby trial.
I currently use a nebulizer with 7% saline and an Aerobika-approved by my pulmonologist and adapting recommendations from what I have read here. I’ve only used them for a couple of weeks so far.
My question to you is did you have side effects from the clofazimine and while on it, did you take any supplements, such as probiotics, vitamins, etc.? I wonder why your study was only 6 months if you were having good results from it?
Anything you could contribute would be very helpful as I am apprehensive about the drug route, but I’m also very tired and frustrated going over 2 years without a diagnosis of MAC/chimaera strain and I am desperate to feel better.
Thank you so much and wishing you good health!
Susan

Hello, Susan. I will do my best to answer all of your questions. I so sorry that you have experienced the diagnostic delays that are so typical with this illness. Take heart. You will be taken care of.

Looking back, I wish that I had started with at least the Azithromycin and Ethambutol sooner. I was not only treatment naive, but also naive about the extent of what I was dealing with.

When I finally got to UT Tyler, my culture showed +4 Mycobacterium avium complex, specifically intracellulare. My smear was a +2. At the time, I felt well and coughed only minimally. I was also diagnosed with bronchiectasis. My clue that something was wrong was hemoptysis.

Dr. McShane told me that I was a good candidate for the Clofazimine trial. It was a small trial of only 25 patients at the UT facility and another 25 at the Oregon Health Science center. They had used Clofazimine in MAC before quite often, but never singly, and the goal was to see if, by itself, it could at least arrest the growth. Clofazimine is normally always used in combination with other meds (especially for leoprosy), and it facilitates the breakdown of the bacterium cell wall, so that the other meds can do their thing. It also shortens treatment duration.

When it is combined with other drugs, I think the dose is low, typically around 50 mg. In my single study, I was on 200 mg once per day (4 round pearls of med, one dose) for 4 months. Then the dose was reduced to 100 mg a day (2 round pearls taken at once). I took the meds daily.

I took a high quality probiotic every morning and took the meds with supper. It is supposed to be better absorbed with fat.

I took a strong multiple vitamin daily and spaced my minerals well away from the med. I have take 4 grams of fish oil daily for 15 yrs, as well as a good curcumin supplement and boswellia- all for osteoarthritis. This has kept me off of arthritis meds very well. I also take a good Co Q 10. Basically, I eat lots of whole grains, fresh vegetables, fruits, fish and chicken. Always drink Matcha tea, etc.. and eat organic, when possible. Still got MAC!

I believe mine began with bronchiectasis probably traceable back to a routine colonoscopy 10 yrs ago, when I was overdosed with Propofol and, unknown to me, sent home after having aspirated. My internist diagnosed the aspiration pneumonitis when I was coughing blood then. She said I had a severe lung burn.

I believe that began bronchiectasis that I was unaware of, and that set the stage for the MAC. I have no idea how long I have had it.

As for side effects from Clofazimine, I always took it with a full meal. I always used a high quality probiotic each morning. I never had nausea with it. I did experience progressively loose stools, as the drug accumulated in my system, but then again, I was probably on a higher dose than you will be on. I did not have diarrhea or nausea.

I did have skin discoloration that began after the first few weeks. I would describe it as a mild sunburn or more bronzing. This was from head to toe. I experienced the orange urine and perspiration, which I only noticed when I wore a white blouse. It concentrated around the neck and underarms. My tears were never discolored. The doctor said that this discoloration would gradually and imperceptibly subside after treatment ended.

I did have very dry mouth. My labs remained pretty steady, but my final one showed lower white count and RBC counts. My liver enzymes only very slightly increased and remained within normal range. My creatinine very slightly increased.

Overall, as my doctor had told me, Clofazimine is very tolerable. It does cause a buildup of crystalline deposits, especially in spleen, liver, and GI, but I have never gotten an answer about how long those remain and any long-term effects.

If I had been offered the Azithromycin combined with Ethambutol and low dose Clofazimine, I would have taken it. As it is, the Clofazimine alone did not arrest the MAC, and the bronchiectasis during treatment progressed.

I believe that aggressive treatment early may be wise and that it becomes more difficult to treat, the longer treatment is delayed.

I have been on the Azithromycin and Ethambutol now for several weeks, 3 times weekly, taking all the tablets at once at night at bedtime, as my doctor recommended. So far, I am ok, with just occasional light-headedness. I have added additional saccharomyces boulardi and also rhamnosus to my other probiotic blend. I always take those early morning.

Don’t be afraid of the meds. You will be very closely monitored, especially while on the trial, and any adjustments needed to your refining will be made. Your safety is a primary concern for the study administrators.

It is easy to feel overwhelmed and discouraged, but it seems that you have still caught this relatively early, and the outlook for you seems to be very favorable. Continue with the airway clearance. When I was diagnosed by a pulmonologist 3 months before I found UT Tyler, I was not even referred to respiratory therapy and was denied nebulizing by that practice!! I had to beg just for the PEP. You are ahead of the game and in good hands with this trial. I wish you well and know that you will be able to tolerate it. Don’t be afraid.