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Chlofazamine Clinical Trial Experience and Watch & Wait
MAC & Bronchiectasis | Last Active: Mar 9 9:58am | Replies (20)Comment receiving replies
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?
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I asked Dr. W's assistant about culture frequency and she said that for patients in treatment he usually does AFB testing every 3-4 months, and for patients not in treatment it's 6-12 months—oftener if something of concern comes up.
Good to know, and to have doctors I trust. I'm also feeling good about my pulmonologist who is closer to my home. He was following the recommended protocol in advising me to start the Big 3, but as he said last time I saw him, he likes bringing in Dr. Winthrop (ID doctor and researcher), because he has more options. For now it's nebulizing and walking for me!
Anna