Participation in trials at OHSU and my progess in treatment.

I saw Dr. Winthrop at OHSU last week and wanted to share a bit of what I learned.

First, he told me the report on the clofazimine trial is about to be released. In the trial clofazimine was used alone for six months as a treatment for MAC and the results showed it is effective and will become more available as a treatment in the US. He said they also learned some things about side-effects but did not elaborate. I was on the placebo in the trial.

I have now been on azithromycin and ethambutol since late January. I take both drugs in “2 hours before bedtime with ice-cream” (that is the prescription written on each bottle of pills!) and have had no side-effects. My sputum test came back clear of MAC, and my CT scan was not just stable, but improved!! The MAC seems to be hanging out in just one area, along the right side of my heart. I will continue the antibiotics for the remainder of the year.

As part of this treatment, I agreed to be on a CRISPR study, which tests the blood for the DNA of MAC. Dr. Winthrop did not yet have any results which related directly to me, but said, he will eventually get those. I was happy to hear that even after the study they will continue to test my blood for MAC DNA. Hopefully, that means I won’t need to do the sputum testing, and maybe even the CT scans, unless I develop symptoms that indicate some other infection.

I’m feeling very good, but Dr. Winthrop did bring up the possibility of surgery…which I am going to put in another discussion.

Good health to all,
Anna