Perhaps a fresh pair of eyes (new Pulmonologist) might help. You can in certain circumstances wean yourself off the 02 with supervision. The 1st pumonologist of five years ago wanted to put me on 02.....sought another physician and still am not on the 02. He may not have mentioned Dupixent as it has only been approved since 2018...now there is a newer drug called Ohtuvayre that has just come on the market and is already being prescribed. It works differently that Dupixent so it would be possible to be on both, but that is a patient/physician discussion. I would go to a top notch Pulmonologist that is well versed in COPD. There are also valves that can be placed in your lungs to help......but only if you meet medical criteria. Please seek these options out for an improved quality of life.
Ensifentrine is the other name of the medicine you’re talking about. It didn’t have as rigorous clinical trials showing benefit for those of us already in triple therapy (LAMA, LABA, ICS) and is taken 2x/day via nebulizer.
It was approved for COPD but is costly if you don’t have insurance coverage. I called my insurer and found that for me it’s covered any my copay would be < $100/month.
It’s basically nebulized theophylline. I have not yet heard from folks with COPD whether they’ve had improvements if their symptoms. My lung docs are more impressed with the data from the dupixent trials that showed significant reduction of frequency & severity of exacerbations, which is why they want me to try it 1st. We only like trying 1 rx change at a time. If too many things are changed, hard to know what is causing what.
You're exactly right, the generic is Ensifentrine! I am currently on triple therapy and have been for several years, only added Dupixent in November 2023 after I had Zephyr valves placed in my left lower lobe at Duke University. The results from that were phenomenal. The Dupixent seemed to lose its punch after about 7 months and was helping less and less with the congestion. I researched the Ohtuvayre....it is more like the Daliresp in it's action as it effects PDE 3 & 4, enzymatic system. I was on a conference call with a group of NPs who were actually keeping there patients on Daliresp and starting Ohtuvayre. whereas Dupixent targets inflamation type 2 interlukins 4 & 13 secretions. Think there is next to no information post marketing as it was only approved recently by the FDA and available to physicians to prescribe in September of this year. Both are for secretions but but different action points. I totally agree with you...Make changes in medication one at a time and at the lowest dose possible. I wish you the best of luck with the Dupixent in treating this dreadful disease.
In response to all; the longer you can keep from being oxygen dependent the better. I can't do anything without it now and I'm pretty sure that if I was a little less fearful and more eager to learn about COPD in the beginning I might had held off for a while longer. I am now tethered in my apartment and do have a portable for outside activities
My doctor has never suggested Dupixent; sounds very promising.
Yes, the Dupixent website accurately identifies which conditions it has been approved to treat, including severe eczema, asthma with high eosinophil levels (300 and above), COPD with frequent exacerbations, and others. As stated above COPD approval was only authorized by FDA in late September.
The clinical trials on the various biologic medications so far have only shown that Dupixent has reduced frequency and severity of exacerbations as well as increased lung function. Those are very promising and I’m hoping this new treatment will be effective for me with only very mild and tolerable side effects.
Yay--had a conversation with another person at CVS Specialty Pharmacy. She was happy to get the information I shared from my BCBS insurer. She agreed it makes sense to start this new medication AFTER returning from my trips so I don't have to worry about trying to keep the medication at the correct temperature (under 77 degrees).
She also said that I could either have the medication delivered at my prescribing MD's office so they could administer my loading dose or they could have a nurse come to my home and administer the loading dose at no extra charge. I told them I'd prefer the latter, as my MD's office is crazy busy and they travel a lot and are already over-worked. If she does the dosing at my home, I can be sure it's at a time when both I and my husband are available to learn. The prior CVS person said they just wanted to mail the Rx to me and didn't have any way to help me learn how to do everything correctly and answer questions in person. This person seemed much better informed.
Well, another call from CVS today. She said just using my insurance my copay would be just under $1000 @20%! I said why not use the discount card I’ve shared with your office several times already. She looked and said, “Oh wait, now I see, ya you provided that info the other day. In that case, you have NO copay and yes, we can send a nurse to your home to demo and administer your charging dose.”. Sh said we can mail the medication to you but I told her to have the nurse bring it with the sharps container and NOT mail me anything.
She said they’d call again after finishing the paperwork to set up a date for the injection & visit.
Ok, more calls today. One call with CVS Specialty Pharmacy again today and then a call from the NP who will come to my home with the medication and guide me to inject myself at the end of next month (at my convenience) with a specific time slot.
Ok, more calls today. One call with CVS Specialty Pharmacy again today and then a call from the NP who will come to my home with the medication and guide me to inject myself at the end of next month (at my convenience) with a specific time slot.
How exciting! I am so hoping that you will derive satisfactory results! I have either my son or daughter give me the injection as it just suits me better, and I'm a nurse! LOL!
How exciting! I am so hoping that you will derive satisfactory results! I have either my son or daughter give me the injection as it just suits me better, and I'm a nurse! LOL!
Connect
Connect
Like
Helpful
Hug
Ensifentrine is the other name of the medicine you’re talking about. It didn’t have as rigorous clinical trials showing benefit for those of us already in triple therapy (LAMA, LABA, ICS) and is taken 2x/day via nebulizer.
It was approved for COPD but is costly if you don’t have insurance coverage. I called my insurer and found that for me it’s covered any my copay would be < $100/month.
It’s basically nebulized theophylline. I have not yet heard from folks with COPD whether they’ve had improvements if their symptoms. My lung docs are more impressed with the data from the dupixent trials that showed significant reduction of frequency & severity of exacerbations, which is why they want me to try it 1st. We only like trying 1 rx change at a time. If too many things are changed, hard to know what is causing what.
-
Like -
Helpful -
Hug
1 ReactionYou're exactly right, the generic is Ensifentrine! I am currently on triple therapy and have been for several years, only added Dupixent in November 2023 after I had Zephyr valves placed in my left lower lobe at Duke University. The results from that were phenomenal. The Dupixent seemed to lose its punch after about 7 months and was helping less and less with the congestion. I researched the Ohtuvayre....it is more like the Daliresp in it's action as it effects PDE 3 & 4, enzymatic system. I was on a conference call with a group of NPs who were actually keeping there patients on Daliresp and starting Ohtuvayre. whereas Dupixent targets inflamation type 2 interlukins 4 & 13 secretions. Think there is next to no information post marketing as it was only approved recently by the FDA and available to physicians to prescribe in September of this year. Both are for secretions but but different action points. I totally agree with you...Make changes in medication one at a time and at the lowest dose possible. I wish you the best of luck with the Dupixent in treating this dreadful disease.
-
Like -
Helpful -
Hug
2 ReactionsI’m cautiously optimistic. It would be awesome if it works and doesn’t cause bad side effects. We shall see.
-
Like -
Helpful -
Hug
1 ReactionDupixent specifically for COPD was just FDA approved at the end of September. It has been in use for asthma and a few other conditions.
Yes, the Dupixent website accurately identifies which conditions it has been approved to treat, including severe eczema, asthma with high eosinophil levels (300 and above), COPD with frequent exacerbations, and others. As stated above COPD approval was only authorized by FDA in late September.
The clinical trials on the various biologic medications so far have only shown that Dupixent has reduced frequency and severity of exacerbations as well as increased lung function. Those are very promising and I’m hoping this new treatment will be effective for me with only very mild and tolerable side effects.
-
Like -
Helpful -
Hug
2 ReactionsYay--had a conversation with another person at CVS Specialty Pharmacy. She was happy to get the information I shared from my BCBS insurer. She agreed it makes sense to start this new medication AFTER returning from my trips so I don't have to worry about trying to keep the medication at the correct temperature (under 77 degrees).
She also said that I could either have the medication delivered at my prescribing MD's office so they could administer my loading dose or they could have a nurse come to my home and administer the loading dose at no extra charge. I told them I'd prefer the latter, as my MD's office is crazy busy and they travel a lot and are already over-worked. If she does the dosing at my home, I can be sure it's at a time when both I and my husband are available to learn. The prior CVS person said they just wanted to mail the Rx to me and didn't have any way to help me learn how to do everything correctly and answer questions in person. This person seemed much better informed.
-
Like -
Helpful -
Hug
1 ReactionWell, another call from CVS today. She said just using my insurance my copay would be just under $1000 @20%! I said why not use the discount card I’ve shared with your office several times already. She looked and said, “Oh wait, now I see, ya you provided that info the other day. In that case, you have NO copay and yes, we can send a nurse to your home to demo and administer your charging dose.”. Sh said we can mail the medication to you but I told her to have the nurse bring it with the sharps container and NOT mail me anything.
She said they’d call again after finishing the paperwork to set up a date for the injection & visit.
-
Like -
Helpful -
Hug
1 ReactionOk, more calls today. One call with CVS Specialty Pharmacy again today and then a call from the NP who will come to my home with the medication and guide me to inject myself at the end of next month (at my convenience) with a specific time slot.
How exciting! I am so hoping that you will derive satisfactory results! I have either my son or daughter give me the injection as it just suits me better, and I'm a nurse! LOL!
good to hear it works for you
has anybody ever used cell therapy for COPD ??