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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 very severe COPD/Emphysema and my Pulmonologist prescribed it for me. I have been using it since beginning of April and I have not had any side effects. It has helped me with my breathing as it is in addition to my other meds.
Your pulmonologist would be the person to talk to.
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1 ReactionI am severe as well and have been using it since mid-August. It has helped me considerably and I hope it continues.
I have Stage IV COPD with chronic bronchitis phenotype. Ohtuvayre as an add-on did absolutely nothing for me! So disappointed. I am currently doing aggressive pulmonary hygiene, Ventolin, Breztri, Dupixent, using a vest for chest percussion, O2 at 2-3 liters....have resigned myself that all the other "stuff" is pretty much hype and a waste of time. Short of lung transplant there are no other options. I have ordered all the high-end palliative "stuff" and will just wait patiently for my husband who passed 5 years ago to come get me. Once I can no longer do self care I will consider other options. it is what it is.
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2 ReactionsI’m stage 4 COPD emphysema and have been on oxygen 24/7 since 2016. I also have other medical issues and have been in Hospice twice.
After reading some of the comments I decided to stop because it sounded so negative and it didn’t make any sense to me.
This is not a steroid. Everyone’s body is different, so one may respond faster than another. How long have you had the disease compared to another? What about another disease are the drugs you take for that compatible?
Why not wait until you complete the 30 day supply of the drug before you comment? What if in 2 weeks or whatever you suddenly started feeling better…….. like me ….. my very first treatment, I got up from my chair to go to the bathroom and I actually felt air coming into my lungs, I wanted to jump in the air and scream “I can breathe!” tears streaming down my cheeks. I called family and friends ….you’ll never believe what happened…..
But then I went to do the 2nd application and I was disappointed beyond words because the nebulizer didn’t work. And every day that I waited for the new machine I was hopeful, OMG, I’ll be able to breath soon without being tethered to an oxygen machine, etc. When it arrived I didn’t get the same results but I know it’s the first thing that made a difference and I believe I will continue to improve. You’ve got to give the drug time. I will report when my 30 day supply ends
I’m thankful for the product and pray it continues to help improve my condition. Anything more would be God’s Miracle.
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7 ReactionsIt sounds like this medication is right for you. I have the same condition as you. Do you have mucus buildup or coughing? It seems most of the medications are ment to loosen this up. I have never had any coughing or mucus; I’m not sure why. I have tried two types of bronchodilator's neither has helped open up my lungs nor does the rescue inhaler. It seems like with all the smoking I did I would have lots, I asked my doctor if they could clean out my lungs but he said no. I think it would. I just need something to open my lungs up it sounds like you had that experience the first time you tried this medication. Others say it took over a month to feel any good from it. Most just quit after a few weeks with no results. Your the first I read that had this type of reaction with the first use. Let us know if you continue to see good things.
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1 ReactionI, also didn’t have mucus or coughing but I do have some now that I’m using the Ohtuvayre and Lavalbuterol in nebulizer. Ohtuvayre has given me a bit of energy, which I badly needed.
Having worked as a nursing assistant for over 20 years I was also surprised at the number of people with COPD that were not aware they need to breathe from the stomach and not the chest. It’s pretty easy to tell , place one hand on stomach and other on chest. Chest and shoulders should not move.
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1 ReactionYes I am aware of the diaphragm breathing although sometimes I find I’m using my chest so I have to stop and focus especially when I’m stressed. I have the levalbetural and the machine but I was told not to use a rescue only in emergency. I take stiolito , it helps a little but doesn’t open me up at all. I have been tempted to use the levalbetural anyway just to see if it helps at all. The albuteral doesn’t.
Do you you know why you have mucus using this medication? Maybe it is creating it or do you believe it’s been there all along and just stuck?
I have energy but just can’t breathe to do anything, I have to stop and catch my breath so often it’s exhausting.
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.
I only learned to breathe from the stomach rather than chest only 10 years ago. Still have to remind myself to stop breathing free m the chest every once in a while…
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1 ReactionI take Trelegy Ellipta and it helps. I have Ohtuvayre and will try it. Its so expensive (as is everything!) that I don't think it's sustainable on my budget.