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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Profile picture for kdny @kdny

I started Ohtuvayre 7/24/25. No effect noted, but 8/8 I had an episode of severe epigastric pain, lasted a day. The next day it was gone but I was very tired, took things easy for a week and a half and lightened diet etc. Returned to rehab 8/23 but found my stamina was less, my heartrate was elevated, and didn't feel as well. I also found my shortness of breath had drastically gotten worse, to the point I could hardly walk from room to room without feeling breathless. Normally I only needed oxygen during the day with fairly heavy exertion. I was also exhausted, felt pressure in lung area and was starting to wheeze.

I continued to take the Ohtuvayre, but started looking online for info, and came upon this site. I saw that some other people had had a severe reaction as I was, and so on 9/18 I stopped the medication. Within three or four days my SOB subsided, energy level and heart rate improved and I felt much better. I'm back to my "normal" level of emphysema now. I have stage 4 and also pulmonary hypertension, but have done very well managing it with LTOT, Stiolto and good diet and exercise. Don't know why Ohtuvayre did not work for me, but I gave it eight weeks!

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@kdny Have you shared the affects you had with it with Ohtuvayre? They want to know this information. You can go to Ohtuvayre.com or call 833-372-8492 which is the number for Verona Pharma Medical Information that is collecting all this information.

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Profile picture for katpetlover @katpetlover

@kdny Have you shared the affects you had with it with Ohtuvayre? They want to know this information. You can go to Ohtuvayre.com or call 833-372-8492 which is the number for Verona Pharma Medical Information that is collecting all this information.

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@katpetlover HI! Yes, I shared with them when they called about sending the next month shipment, and spoke with the pharmacist. I'm glad, because it's important to provide any info that may be helpful. Especially with the cost of this medication, and the fact it's so new.

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Has anyone here started or is on, Ohtuvayre? Experiencing any side effects? Has it helped?
Thank you!!

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Profile picture for tschoch @tschoch

Yes, on 6 weeks. Crashed. Four days in hospital. More or less on old meds, back to normal. Not really definite was O2, but off. And never saw an effect of any kind.

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@tschoch by crash do you mean a COPD flare up

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Profile picture for hicopd @hicopd

All I can tell you is that a senior lung doctor who has been doing medical research for decades told me it’s essentially nebulized theophylline.

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@hicopd
No, ensifentrine is not theophylline. You might want to Google it to see the differences.

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