Anyone been prescribed Ohtuvayre (new med)? Your experience?
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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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.
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?
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.
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
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.
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.
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.
So the quest for the magic bullet continues. (Sigh.)
I just started a few weeks ago and noticed the increased production of phlegm.
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.