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Question regarding lung surgery
MAC & Bronchiectasis | Last Active: Apr 9, 2021 | Replies (60)Comment receiving replies
I too have been on 3 meds for 1 year and the sputum comes back negative but the CT and xrays show the cavities and other area not changing or getting worse. I had a scope put in my lungs to take biopsies and fluid samples. They came back positive after 9 days for MAC. So they sent the cultures to NJH for a susceptibility test and found out 2 of the drugs I was taking were resistant when tested separately and only moderate together. So now they are talking either trying Clofazimine or surgery. My local ID doc is sending all my notes and scans to NJH for second opinion. Has anyone else taken Clofazimine? It is going to take 1 month to get the drug as you can only get it from the FDA because it is not on the market anymore but it is sometimes used for TB when nothing else works.
Kate
Replies to "I too have been on 3 meds for 1 year and the sputum comes back negative..."
Hello Kate, Seems you are lucky to get 'off lable' meds. As for the
cavities etc., they may be permanent damage depending on what is going on in
your lungs. Having your cultures sent off to NJH is a good thing. I believe they
know what they are doing up there. Please keep us posted on your progress. Hugs
- Terri M.
I'd be curious to learn more about that drug also. It came up at the NTM
Conference in D.C.
@kate1320, Hi Kate. Do you still look at our forum? I noticed that we hadn't heard from you in awhile; am wondering how you are doing? - Terri M.
@kate1320 Hi Kate. I attended the Spring conference in D.C. The experts there all conferred that 'clofazimine" was an excellent choice for treatment. That they have gotten good results from it. That drug is considered 'open label', the trials went well with it.
Hi Kate, I took Clofazimine for treatment. I had no side effects. It did turn my skin darker but it just looked like I had a nice tan. It's been 4 months since I've been off meds and my skin still retains the tan. I read that that can take 6 months to a year to go away. If you read about it, it sounds like your skin is going to turn an awful color but not so.
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Hi Kate, I'm tagging @e345l who has also been on clofazimine. She may be able to share her experience with the drug.