Anyone been prescribed Ohtuvayre (new med)? Your experience?

Posted by kdalda75 @kndaustin71, Oct 18, 2024

Has anyone been prescribed the new COPD medication by their treatment team....Ohtuvayre? Just wondering if it now active, how it is effecting patients and how well it does/doesn't work

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@fef

That’s natural, but I think that one of the most important things in life is ACCEPTANCE
I am 91 in April and have more things Wong with me than Carter has little liver pills, but I still mange to fish, bowl, hike all of which require pushing myself..
Push yourself, try Yoga and swimming, well just floating anything that will relax you.
My breathing is really bad, but that’s just the way it is, ACCEPTANCE
I find reading and watching good movies help tremendously .
Anything to get your mind off of your problems. PUSH, PUSH, PUSH.

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Good for you! Are you on oxygen? How do you swim if you are? Pushing yourself is not always a good thing with COPD. It's important to know your limits and when it's time to take a break and rest. I also have a-fib so pushing needs to be limited.

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It is true that the more you do, the mote you CAN do. I just came back from a trip to DC, NYC and SF. We had a nice time and I’m still healthy after all our travels—Yay! I enjoy seeing loved ones and that’s one of my main incentives for travel.

Pulmonary rehab is an excellent option—ask your MD if you can be referred to a great in person or virtual program. The program should provide education and help you develop a custom exercise program!

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Unfortunately I have not heard many, if any positive outcomes with the use of Ohtuvayre! So much hype but not power packed. Ohtuvayre was developed to help those with COPD with a CB phenotype (chronic bronchitis) so not appropriate for COPD without bronchitis. I started Dupixent in November 2023 and had great results with it for about 5 months, significantly decreased secretions. Have tried literally everything with little success in secretion management. Finally, my treatment team thought perhaps I should see an Allergist/pulmonologist. Hopefully, we will find a reason that the Dupixent effect waned - antibody formation, maybe. Just started Daliresp at 500 mcg today so am giving that a try. Keeping my fingers crossed!

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@hellopam

Good for you! Are you on oxygen? How do you swim if you are? Pushing yourself is not always a good thing with COPD. It's important to know your limits and when it's time to take a break and rest. I also have a-fib so pushing needs to be limited.

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Not on oxygen yet, and indeed you are correct. I did not mean to give the impression that I pushed as hard as I could. Actually I know my limits and I try to abide by them.
That’s for your response.

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Yes. And to been wonderful for me
3 months now. Can breath so much better.

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@parpro

I thought i posted this the other day but I don’t see it so I’ll post again. I’m wondering if anyone has seen their sob worsened with Ohtuvayre? I’ve been on it for about 6 weeks now. Definitely no improvement. I had planned to give it 3 months. but lately have really been practically gasping for air most all day-not at rest. I’m on oxygen 24/7. And now a round of prednisone which doesn’t seem to be helping. Just thought that perhaps I’m having a reaction to the Ohtuvayre. Will check with dr on Monday but thought I’d ask here.
I’m hoping this is not the normal progression of the emphysema. 🙏🙏

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I'm having the same problem and only been on it for 4 days, I spoke with my Dr, he would like for me to start taking it again at 8am and 8pm until I see him on Tuesday.

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@kndaustin71

Verona Pharmacy has just placed on the market a new treatment option for patients with COPD. The name of the drug is Ohtuvayre - pronounced O 2 vayre. It focuses on PDE 3 & 4 to help reduce secretions with patients with not only emphysema but with a over-lying bronchitis as well. It is administered via jet nebulizer twice a day.
Just wondered if anyone has started using it and whether they found it to be helpful.

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I have used it for 2 months now but am not seeing much for results. We (my husband and I) decided I'd stay on it for 4-6 months to see if that changes. If not, I am stopping as it is so expensive.

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@kndaustin71

Unfortunately I have not heard many, if any positive outcomes with the use of Ohtuvayre! So much hype but not power packed. Ohtuvayre was developed to help those with COPD with a CB phenotype (chronic bronchitis) so not appropriate for COPD without bronchitis. I started Dupixent in November 2023 and had great results with it for about 5 months, significantly decreased secretions. Have tried literally everything with little success in secretion management. Finally, my treatment team thought perhaps I should see an Allergist/pulmonologist. Hopefully, we will find a reason that the Dupixent effect waned - antibody formation, maybe. Just started Daliresp at 500 mcg today so am giving that a try. Keeping my fingers crossed!

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Unfortunately my insurance won't pay for genetic testing. Through a gifted genetic test I learned I had one allele for cystic fibrosis. The company tests for more "popular" health issues such as breast cancer but not for COPD issues.

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Used ohtuvayre for 13 days Almost immediately my sleep was affected (would sleep for 2 - 3 hours, then unable to resume deep sleep). I also began to notice anxiety and significant depression. There were two occasions in the second week of treatment when I became extremely short of breath immediately after the treatment. I also noticed an increase in SOB. I stopped using it and my mood and sleep improved almost immediately. My SOB is also less and I'm back to my pre-ohtuvayre baseline. So disappointed, was hoping this would make a real difference.

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@jagrnlmhc48

Used ohtuvayre for 13 days Almost immediately my sleep was affected (would sleep for 2 - 3 hours, then unable to resume deep sleep). I also began to notice anxiety and significant depression. There were two occasions in the second week of treatment when I became extremely short of breath immediately after the treatment. I also noticed an increase in SOB. I stopped using it and my mood and sleep improved almost immediately. My SOB is also less and I'm back to my pre-ohtuvayre baseline. So disappointed, was hoping this would make a real difference.

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I am up against the ropes with it as well, been on it since Dec on and off, had to stop after several days in Dec then had to go in and get a steroid shot to be able to breathe... Since then I start up now and then, one single daily treatment every-other-day or so to keep gathering data on myself, and am at the point again right now that i can't hardly walk to the kitchen without having to stand there for a minute to catch up. Frustrating. I have been combining it with Trelegy 200 taken about 4 hours apart and tried it without Trelegy the last 2 days, and I am about seized up again, dang it. I quit the Trelegy temporarily because I was starting to get the idea that combo was a bad idea. ..So, trying another approach, I stopped the Ohtuvayre after yesterday morning and today I am coming out of it somewhat with just a dose of Trelegy 200. ...QUESTION : What about combining Ohtuvayre with Tiotropium as the Ensifentrine trials that I just read suggested gave a measurable gain as an add-on treatment? Anyone try that combination ? Thanks

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