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Ensifentrine - Trial for Non-cystic fibrosis Bronchiectasis patients
I spoke to my pulmonologist yesterday and she told me there is a trial for Ensifentrine (Verona study) that was originally a trial for COPD patients. It's an inhaled medication and FDA approved. The trial is being extended to patients with bronchiectasis. You can find out more and see trial locations and eligibility here:
https://ctv.veeva.com/study/a-phase-ii-study-of-ensifentrine-in-non-cystic-fibrosis-bronchiectasis
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@kdiago1564, Sorry for the delayed response. We are on a road trip.
I am still in the process of the trial. My pulmonologist put me on brensocabit, I will give it a try. I am not sure if I should continue with the process for the trial. Simply believe that a drug is here to use and being tested. For the trial, I am not sure if I will get the drug or the placebo. I am in a hurry to treat my inflammations and prevent more exacerbations. But the trial might go on for a while, if after 16 weeks, my condition doesn't improve, I may still consider the trial. But I will talk to my ID doctor, Kevin Winthrop. He is the one who wanted me to be on the trial only because he didn't know the drug was on the market so soon. He thought it would be at the end of the year, by then I would finish the trial. This is my situation.
Ling
@wangling Don't worry about your response time! Road trip sounds more fun!
I feel conflicted about getting screened for the trial for the same reasons. If I have inflammation now, isn't it better to just get on an available drug proven to reduce inflammation right away? Confusing, honestly. 🤔
I'd be curious to hear what your ID doctor says and the logic behind one path vs. the other. I think the one and only downside of Brenso is the possibility of side effects but maybe they're not super common. Since I have a staph colonization, I feel like nipping inflammation in the bud is the priority.
Do you have frequent exacerbations? Have you been treated for MAC already? I know there are many factors that inform a treatment plan.
I have staph colonization too. My ID doctor said, 40% people have it. Just
because it is every where. It is very common. We can leave it alone.
What the saying goes? A bird in the hand is better than two in the bush. I
think it is logical to take brensocabit. In the ideal world, we don't want
to take any medications, I, personally a strong believer in natural healing
all my life. I was lucky enough, did not have to take anything. But after
I got BE, I realized, anything helps me to have a quality life is worth to
try. Life is short. Really.
Generally speaking medications are all bad in some ways, but they also
save lives. Not everyone has the side effects, only certain people have
it. This is just what I think. Hope it helps.
Ling
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2 ReactionsThank you! @wangling I think the staph colonization causes me a lot of anxiety and I honestly don’t know if it can do a lot of damage or not but I just wish it wasn’t in there. So far I don’t have symptoms other than coughing up orange plugs and feeling fatigue.
I agree with you completely. Better to just take what’s available to avoid complications with recurrent infections. I will have to decide whether I try the trial or not. I hope you have a great road trip!! I really appreciate your thoughtful responses with all this.
Finally got cleared for this trial and get randomized on Wednesday so fingers crossed I get the drug! 🤞🤞🤞
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4 Reactions@kdiago1564
Reviving this thread to see how the clinical trial of Ensifentrine is going for you. Do you think you're on placebo or Ensifentrine?