Chlofazamine Clinical Trial Experience and Watch & Wait

Thank you. I want to do this trial but not sure I am brave enough to try. Any information you can offer would be great. Side effects, etc.
After reading all the information in the trial material it sounds so scary!!! Can't make a decision.

The trial begins with 4 months of 200 mg a day for 4 months. Then it drops to 100 mg a day for 2 months.

My skin did darken, and it did become extremely dry. The nurse recommended Gold Bond cream. I never had nausea and always took the meds with the evening meal. I was told to take it with food, and I think that taking it with a full meal hindered some absorption. I think the small amount of fat is a better idea.

I had some loose stools occasionally but no diarrhea. No pains or nausea. I felt well and found it easier to gain weight on the 200 mg. Clofazimine. A couple of weeks into the 100 mg, I began to feel tired. My doctor pulled me out of the trial after 6 months because my numbers started climbing.

It has a long half life. I started the Azithromycin and Ethambutol 3x weekly immediately after stopping Clofazimine, and I dropped to just a few colonies in a few weeks. My doctor had to wait until six months before adding the nebulized liposomal Arikayce. They will soon allow Arikayce to be started right away with the other drugs. Since the Arikayce is nebulized, and I only use it 3 times a week, I don’t have side effects that would occur with daily use of if it was in pill form and swallowed. I have been smear and culture negative for 3 months now.

I think the Rifampin is the nasty med that causes so many issues. Since they now have Arikayce, you can be treated without Rifampin. I always think about the people who stopped their meds because of Rifampin side effects

Clofazimine is probably better for people with mild disease. Probably more effective as a single drug for those people. It is the best when combined with 2 other drugs because it facilitates their entry into the cell wall. When I was first diagnosed, I had a +2 smear and a +3 culture and had symptoms. The Clofazimine alone will have better results if you are not yet symptomatic.

I think they are looking for a maintenance drug that is more tolerable, and Clofazimine is. It took about 5 -6 months for my skin discoloration to disappear. I would say that, for me, the extreme dryness was the only bothersome side effect. This is one of the more tolerable drugs.

I would not be afraid of the drugs they have now. This bug damages your lungs and worsens bronchiectasis, which then leads to more risk for bronchiectasis and greater likelihood of reinfection. By treating it early, you shorten time to culture conversion and lessen damage. That is just my opinion from what I have learned. If you have an excellent team that is closely monitoring you, they will know when it is time to start meds.

Following up on the Clofazamine trial which I participated in, my sputum culture results from the end of the 6 month trial period, just cam back negative. My next appointment with Dr. Winthrop is in early May, but his assistant says, though the results don't necessarily mean it's gone, it does indicate that the micobacterial infection is at least suppressed. I'm happy about the news and eager to discuss what the next steps will be. I'm expecting CT scan at 6 months, but wondering how often he'll want to do sputum cultures.
For those who are "holding your own" how often are cultures done?

Just curious if you are walking outdoors year round and if you wear a mask all the time or especially when pollen is on the rise. Thank you