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

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

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!

Jump to this post

@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.

REPLY
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.

Jump to this post

@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.

REPLY

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

REPLY
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.

Jump to this post

@tschoch by crash do you mean a COPD flare up

REPLY
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.

Jump to this post

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

REPLY
Profile picture for rick33763 @rick33763

I never tried DUPIXENT,I have read about people using it & of course the Ads,I still use Trelegy Ellipta with Obtuvayre…

Jump to this post

@rick33763
My doctor switched me from Trelegy to Breztri. It worked better and got down in my lower lungs because it is an aerosol. The Trelegy powder didn’t help my lower lungs. I’m hoping the Ohtuvayre helps me as well.

REPLY
Profile picture for linda86 @linda86

I started ohtuvayre today. I got a call that I will get to try it and since I have very good insurance I will have no charge. I was very surprised and very grateful. 🙏🏼
I am to still use Trelegy. I hope am not disappointed. I am a very social person so a lot is riding on this.

Jump to this post

@linda86
Is your insurance a Medicare Advantage? If so, what is it?

REPLY
Profile picture for mimi7480 @mimi7480

I too had a very positive initial reaction to Ohtuvayre but it was just for 1 day when I first took it and then I reverted back to the same level I was at. I have continued use for 30 days and may see some improvement but nothing significant. I’ll hang in there though and hope to see some change soon.

Jump to this post

@mimi7480
I just don’t see any big difference between my post and your comment. First time I was estatic, jumping with joy. Then machine didn’t work and when replacement arrived I saw no difference. I don’t give up easily and I’m a positive person. I know my body well enough to know the risks in taking certain drugs.

REPLY

I had very positive response first day. late on the 4th day I developed piercing head ache and same feeling in my left eye. Turns out I had Shingles on my face and scalp on my left side. The shingles effected my left eye giving me double vision which has been fixed by glasses with prisms. I did let them know of my experience. I wish it had not happened because it was working so well for 4 days. At this point I feel fine without it. Still on Trelegy and switched from Albuterol to Ipratropium with Albuterol, which seems to work better.

REPLY
Profile picture for stevelc @stevelc

@rick33763
My doctor switched me from Trelegy to Breztri. It worked better and got down in my lower lungs because it is an aerosol. The Trelegy powder didn’t help my lower lungs. I’m hoping the Ohtuvayre helps me as well.

Jump to this post

@stevelc I am now on Breztri also but I don't feel any effect when I inhale it. Do you?

REPLY
Please sign in or register to post a reply.