After a glorious one-year drug holiday, I am about to re-start therapy for M. Abscessus. One of the drugs my docs are going to try this time is Clofazimine. Has anyone on here ever taken it? I know it's a longshot, but I'm hoping someone has, and can perhaps share his/her experience.
I'm well aware that it causes skin discoloration, and I also know that some people develop gastrointestinal issues. But, I'm trying to understand what this really means for patients who have taken it. I totally trust my doctors, though I know they want me to take it, so I wouldn't be too surprised (and also wouldn't blame them) if they've downplayed the side effects a bit. And of course, if you google it, you can find all sorts of ridiculously terrible results. So, I'm seeking some real-life experience."
"I don't really keep in touch with anyone else who has Abscessus, so I don't know how others are doing. Though I've been on and off drugs since I was diagnosed in 2007, I've done pretty well. I've been smear positive much of the time, but am still pretty healthy and have maintained my lung function. I've taken a mix of IV and oral drugs during that time, though the thing that made the most difference for me was taking part in the Arikace clinical trial. I was actually smear negative (though still culture positive) for about six months after the trial, which was a minor miracle for me."
"Arikace was awesome. Have you heard much about it? For the phase 2 trial I was on, I think something like 25% of the (treatment refractory) participants were culture negative at the end of the trial. I think if I could have stayed on it longer, I would have gotten there too. Now all I can do is pray that it gets FDA approval soon! The FDA did designate it as a "breakthrough therapy" after the trial results came out, but I don't really know what that will mean in terms of FDA approval. If they need to go through a phase 3 trial, I think we'll still be at least a few years away from it being readily available."
"Yeah I heard a bit about it, very promising results! I am off meds & culture negative and hope to stay that way forever, but I've seen so many reports on this forum about people who relapsed that it is a comforting thought that new treatments are being developed. I hope FDA approval comes soon for people like you & others who need it."