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I had a video appointment with the pulmonologist assigned to me, and her only treatments for me with stage 4 COPD are Wixela inhaler twice a day, Combivent inhaler 4 times a day if needed, and duoneb 1 vial by nebulizer every 6 hours. The stage 4 is diagnosed by a walk test and breathing test and that is all. That's it, nothing else unless I am hospice when she would prescribe prednisone and or morphine. If I see something on here I want to try I can give her the name and she'll see if she'd… read more
@A MyCOPDTeam Member ,
We all have done those tests . The breathing test tells the doctor what level your breathing capacity is and the walking score is done with an oxy pulse meter . It determines what you blood oxygen level is . Mine usually are in the high 80's . 86 or 88 . It would help you alot if you could buy an oxy pulse meter for yourself . Anyone that's below 90 needs to be on oxygen . They sell them at drug stores Walmart and Amazon . I'm on a drug called Trelegy for my once a day breathing . That's similar to that Wixela and I use Proair as my rescue in haler . Some people use those every 4 to 6 hours . I agree with you about finding another doctor if someone seems closed minded . You can also buy a lung exerciser device to help clear out mucus from your lungs too . They sell those on Amazon . Look up breathing exerciser for lungs on Amazon . Many people here have received Zephyr Valves for their Emphysema . Not everyone is a candidate for that though . Your lung had to preform a certain way . Many people fortunate enough to get thoses don't even need oxygen anymore . That is so amazing to me . I hope this info helps you . I hope your having a nice evening breathing easy ! Susan
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@A MyCOPDTeam Member there is a product available over the counter (in 🇨🇦) called Secaris. It is a tube of clear lubricating gel for nasal passages. Works well for me. On 02 24/7 and at night through a bipap machine.
Try the secaris, it was recommended to me by a hospital pharmacist and I was amazed at the relief.
She is not the doc for you, @A MyCOPDTeam Member !
Not a doc, but I do my own research and work collaboratively with all my specialists to see what more can be done to improve my quality of life.
If she’s said you’re stage 4, end stage, then she must have ordered a pulmonary function test to figure out whether you have chronic bronchitis or emphysema, as well as what your lung function may be… If you don’t have those records, ask for them or insist the tests be run.
Your lung function also varies with the season (hot, cold, humidity or dry air, etc., etc., etc.) so if nothing else, ask for a PFT for Spring weather, and keep going for the next 2 years to document what your function may be in all seasons.
While I’m not a fan of the inhalers (one can build up a tolerance to them), many COPD patients swear by them. You might want to show her the Dupixent study results from March 2023, and see if this is something she might consider prescribing for you if you’re not satisfied with your current treatment plan:
https://www.sanofi.com/en/media-room/press-rele... (Phone number can only be seen by the question and answer creators)
Sorry I don’t have better suggestions, but between @A MyCOPDTeam Member and me, I hope you’ll find some helpful suggestions. Good luck.
17-APR-23
In addition to medications, I would suggest requesting a referral to a pulmonary rehab program. If that’s not available ask about working with someone to set up an exercise and nutritional plan with you. Exercising and eating well can do wonders
I assume that the breathing test was at least a spirometry test, which is the single definitive diagnostic tool for COPD, which includes both emphysema and chronic bronchitis and a couple of other things like asthma and bronchiectasis, depending on your pulmonologist. The walk was probably to confirm the need for 02. Wixela, with Combivent and duoneb (combivent and duoneb are exactly the same medication with one as an inhaler and the other as a nebulized med) are standard meds for COPD in stage 4: a long acting beta agonist (LABA) and inhaled corticosteroid in the Wixela and two short acting muscarinic agents (Combivent and duoneb). The pulmonologist prescribed the least expensive options for you.
There are lots of combinations available: every pharma company that produces inhalers has LAMA, LABA and ICS combinations and there are two that produce a three-in-one combination (Trelegy and Breztri). So you're getting a perfectly acceptable combination of meds that's appropriate for your stage. You're also getting supplementary 02.
The part that's missing is what you need to be doing for yourself: daily exercise (ask about pulmonary rehab), weight control and diet, getting sufficient sleep, water and nutrition. The life-style changes you can control and manage will probably make a bigger difference in your level of functioning and quality of life than anything else you could do.
Your doc has done a good job for you. Now you can show her what you can do for yourself by learning about COPD and asking good questions. If you really want to learn about COPD go to www.copdfoundation.org and go to the learn more tab. Read everything there and you have a good start on learning about COPD and how to manage and control it.
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