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.