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.

I have COPD, have been on O2 since catching an RSV in 2023 and winding up in intensive care at first was only on 2 liters except when very active then on three. Started ohtuvayre in the end of 2024, also Dupixent. Caught the Flu type A this January now on O2 at 3 liters and 5 if moving around. This has pretty much made me house bound or liquid O2 if I go out. I have had no exacerbation since leaving the hospital. Have stopped the Dupixent, face rash, eye infections, UTI’s. That being said I discussed with my doctor, I told him I was no longer coughing up mucus, or coughing at all. I though that ment the meds weren’t working but he said they are doing great if I’m no longer coughing or having lots of mucus. So I am continuing for now. He wanted me to continue the Dupixent but I felt the side effects were too much. I wouldn’t expect miracles from ohtuvayre but it should help stop exacerbations.

REPLY
Profile picture for pamelaaci @pamelaaci

I have been on Ohtuvayre for 5 months, since Aug 12 2024 and can say I am so far very happy with the results. After 3 weeks I found a big drop in SOB, and my time on the treadmill doubled from 1 mile to 2 miles at 2.5 - 2.7. This was a big jump for me and fingers crossed it continues...

Jump to this post

I’m very happy for you because it’s fantastic news but there’s a big difference between the people taking the product. I’m stage four COPD and can hardly walk to the bathroom, on oxygen, without hyperventilating while your on a treadmill doing a mile a day BEFORE Ohtuvayre while you are on the treadmill doing 1+ mile per day.
I can’t even begin to image what that would feel like. I just hope that people recognize the huge difference when we have nothing to really compare it to. There should be something where people state:
How long have they had COPD
on oxygen? 24/7? .?
How Active?
Sleep Apnea?

REPLY
Profile picture for lovemyboys @lovemyboys

Mine is yellow and I shake until it turns white- this is opposite what you said

Jump to this post

Manufacturer has been told by multiple users that it sticks to the top of the vial -- something that no amount of "vigorous shaking" seems to help.

REPLY
Profile picture for copdinny @copdinny

Manufacturer has been told by multiple users that it sticks to the top of the vial -- something that no amount of "vigorous shaking" seems to help.

Jump to this post

Right now I take trilogy and daliresp. I've been on both of those for at least 5 years does this new one that you're talking about help better than the two that I'm on

REPLY
Profile picture for 0620 @0620

Right now I take trilogy and daliresp. I've been on both of those for at least 5 years does this new one that you're talking about help better than the two that I'm on

Jump to this post

Ohtuvayre was approved by the FDA only recently, and is super expensive unless you can get on the manufacturer's financial help list -- and even then you have to have spent at least $2,000 out-of-pocket on drugs and medical before you get it for free for tthe rest of the year.

It helps a little. But after about 3 or 4 months on it, I've gotta admit that I'm disappointed it's not the magic bullet I was hoping for.

My problem with Trelegy -- which I just got back on after problems with Breztri -- is that I can no longer seem to inhale as deeply as I once did. Experimenting now on the best order for taking Trelegy and Ohtu. Alas, never heard of that other drug you mentioned till now, so I can't help you on that.

REPLY
Profile picture for kdalda75 @kndaustin71

Ohtuvayre has been a huge disappointment for many! Has your Pulmo mentioned Breztri to you? I ask because I have used Trelegy and found Breztri to give me a little more "Bump." I believe Ohtuvayre is a PDE medication similiar to the effects that one would have with Daliresp.....Has that been part of your discussion with you Dr.?

Jump to this post

I just had to stop using Breztri 'cause it gave me "flush face."

Doc recommended it because Trelegy -- which I'd been using for awhile -- had become less effective. Mainly, I think, because I couldn't inhale as deeply as I once did.

Actually, it was my second attempt with Breztri. Frist time, back in March 2025, I stopped after 3 days because it made me kind of nauseous.

REPLY
Profile picture for copdinny @copdinny

Ohtuvayre was approved by the FDA only recently, and is super expensive unless you can get on the manufacturer's financial help list -- and even then you have to have spent at least $2,000 out-of-pocket on drugs and medical before you get it for free for tthe rest of the year.

It helps a little. But after about 3 or 4 months on it, I've gotta admit that I'm disappointed it's not the magic bullet I was hoping for.

My problem with Trelegy -- which I just got back on after problems with Breztri -- is that I can no longer seem to inhale as deeply as I once did. Experimenting now on the best order for taking Trelegy and Ohtu. Alas, never heard of that other drug you mentioned till now, so I can't help you on that.

Jump to this post

I have been using Ohtuvayre for 4 months now and was also hoping for more. My pulmonologist prescribed it as an additional neb treatment along with Formoterol and Budesonide.

REPLY
Profile picture for katpetlover @katpetlover

I have been using Ohtuvayre for 4 months now and was also hoping for more. My pulmonologist prescribed it as an additional neb treatment along with Formoterol and Budesonide.

Jump to this post

So the quest for the magic bullet continues. (Sigh.)

REPLY
Profile picture for rick33763 @rick33763

I have been on it Ohtuvayre for about 2 months it does open my airways to help me breathe better for a few hrs & still feeling like a guinea pig testing the Script I noticed recently I have been coughing up more phlegm,but it’s been cooler here in Florida & been walking my dog more….

Jump to this post

I just started a few weeks ago and noticed the increased production of phlegm.

REPLY

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.

REPLY
Please sign in or register to post a reply.