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@vmorton Has anyone with BE taken Ohturvayre?
@vmorton
[Moving your comment to its own thread as your question is unrelated to reflux.]
Ohturvayre is FDA approved for COPD. It is in clinical trials for BE, with possible FDA approval in the 27/28 timeframe. Research hospitals are still recruiting for the clinical trials of Ohturvayre. Anecdotally, I read here that for those with both COPD and BE it has been very helpful. I, for one, am looking forward to trying it once it gets approved. I cannot participate in the trial because I am on Brinsupri. I would have to go off Brinsupri for 3 months before starting the trial.
You can also search Ohturvayre in this forum and read what others have written about it.
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I am starting Ohturvayre on Monday. My pulmonologist requested it for me a month ago and it finally came.
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1 Reaction@vmorton
Please keep us posted on how it goes for you. Good luck!
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1 ReactionHello, new here.
I don't have a good story but I took it for almost 3 weeks, the side effect was almost constant diarrhea, I had to stop it. I still have 2 unopened boxes of it in my bedroom closet. I'm sure not everyone has bad side effects, it's popular.
@everybreath Oh, that is an unwelcome development, Was it prescribed to you for Bronchiectasis or COPD?
And here's a VERY important question - did you tell your doctor that you quit, and why, so they can look for something else to help you?
"Silent quitting" of medications due to side effects is a big problem. Not only does the doctor not know you have abandoned the treatment, but they don't know you are experiencing this side effect. This is especially important with newer drugs, because adverse effects often only show up after some time, or when prescribed to the general population. Clinical trials are generally short term, and often restricted to people on few medications, or with few other health issues. Then the new drug gets released, doctors and their often-desperate patients think "let's try this" - and we learn how it performs in the real world. Telling the doctor, and the drug company, about your experience adds to the total body of knowledge about the medication.
@coachcal
@sueinmn Thank you so much for asking, I appreciate it. I was just dipping my toe in as they say, for my first post. I actually have overlap of both and now also MAC. When I was on Ohtuvayre it was right after it first was approved and besides my pulmonologist I also had some interactions with Merck concerning the side effects. My pulmonologist (I actually have 2) only had me try it and another one of his patients who was in the same condition as I was and we both had similar reactions. The other patient stopped after one week. Both Merck (free!) and the pharmacy that delivered it (free!) were concerned about whether the diarrhea would improve once my body adjusted but in reality it actually got worse.
I was being bombarded with it from the pharmacy, every other day it seemed like there was 2 more boxes being delivered! In any case, it was well documented by all. But I understand how your concern was well warranted. These things are important for other patients and the drug developers.
I have 2 pulmonologists, my regular one who I started with and also one at the Temple Lung Center (Philadelphia), which is where I had my last CT scan and exam. He sent me for a sputum culture since I had developed a cough. The first result (2 weeks) was Stenotrophomonas maltophilia, took antibiotics for that, 6 weeks later it was M Avium Complex He wants me to have a second opinion for treatment with an infectious disease specialist which I will have Sept. 3rd.
Which is actually what brought me here. Probably too much info, I can be a talker!