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SOB Relief Using Inhalers
A MyCOPDTeam Member asked a question 💭

I used Pulmicort and Combivent for over 6 months and I didn't really feel any relief from SOB so I quit asking for any additional prescriptions for an inhaler. I'm to the point of why pay so much for a treatment that seems useless. I also asked this question to my friend that had lung cancer surgery 3 years ago and still has SOB all the time. He didn't find that they helped that much either. He said his oxygen gives him the greatest relief. I was up to 3-5 miles of walking every other day… read more

posted January 24, 2018
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A MyCOPDTeam Member

@A MyCOPDTeam Member A 3-miles walk with your dog is some pretty good exercise. I've been trying to walk more, and have gone as far as 5 miles. I've also been going to pulmonary rehab. I hesitate to say this, because I'm the last person who should be giving medical advice, but I will tell you about my experience with ProAir. That was the very first med I was ever given. I used it some and could never tell any difference. I Googled patient reviews for it and a bunch of people wrote that they didn't like it. When I later went to the second pulmonologist, she asked if I would like a rescue inhaler to go along with Spriva and Symbicort. I said no. Later, I changed my mind and called the nurse. She said she would phone in a script for me. I said, please don't give me ProAir. She replied that they never prescribed ProAir because it doesn't work. So she got me Ventolin HFA. Now, please, I'm not saying Ventolin is some kind of great thing, but sometimes I think it helps a little. Overall, I'm like you and don't think any of these inhalers do much. I hate this disease in a way that language can't describe.

posted January 30, 2018
A MyCOPDTeam Member

@A MyCOPDTeam Member Never thought you were butting in, just adding to the conversation. I've read your profile and am impressed by your upbeat attitude, as are so many others. I try to remain positive, but it's difficult. It doesn't seem like my inhalers help much and I'm not yet on oxygen. Maybe I need to be, though that would be the most crushing blow. I was only diagnosed last year. I think my lung capacity on the first tests was around %60. But damn I've been feeling poorly lately and I fear this flu epidemic could kill me (yes, I've had all the shots) I have been trying to exercise as much as possible, going to pulmonary rehab twice a week and taking lots of fairly long walks of 2 to 5 miles. I thought I gleaned from your profile that you are a single person, and I think @A MyCOPDTeam Member said the same thing. I mention this because I wonder how many COPD sufferers have either been abandoned by partners or were never able to form close relationships because of their disease. In my case, I've never married (I'm 65) but have been with the same woman for 15 years. I was not like this for the first 14 years of our relationship, so it's my great fear that she will not be able to bear this situation much longer. She is still relatively young and healthy and must feel there is more to life than what I am able to offer right now. I often feel that I should just tell her to go now while the going's good. As you can see, I can be as wordy as you, but it just seem impossible to talk to people who don't have this illness, because they can't possibly understand. I find it almost hard to believe, but also encouraging, that you are able to function, and even travel, with the lung capacity you mentioned and with oxygen. I've noticed in the last year I've hardly traveled farther than 10 miles from my home -- and I bought a brand new car just before I got sick. I used to travel all along the Gulf Coast, from the Florida panhandle to New Orleans all the time. I bet I've been to NOLA a hundred times in my life; it's only a 2 hour drive. Oh, well, I'm going to quit for now. Thanks for butting in.

posted January 28, 2018
A MyCOPDTeam Member

Ok, @A MyCOPDTeam Member and @A MyCOPDTeam Member, I’ve just got to hop in and add my 2 cents.

Mine is a birth defect, so while I get the unspoken descrimination we may feel from folks who believe we all “did it to ourselves”, I also get that because I’m fat (the belief being that I wouldn't have this disease if I ate less and exercised more). In the end, it doesn’t matter what anyone believes. We just need to concentrate on educating ourselves all the while knowing there is no quick and easy fix.

Whatever the cause of our disease (and pollution / air quality should get a lot of the blame, not just smoking) our doctors wouldn't be good docs if they weren’t just as anxious as we are to find a workable treatment.

As an example, my doc cannot handle end-of-life conversations about decisions to be made as he’s fighting to keep me alive in the hope that I can outpace the forecasted demise likelihood until science catches up. And, the CDC launched 21 clinical trials on stem cell treatments specifically for COPD patients starting in 2016, but documented breakthroughs take years of auditing results to find out what works, what doesn’t work, as well as promising possibilities.

While doctors are well paid, they don’t remain in 1:1 caregiver roles unless they have a passion to aid people. Once the student loans are paid off and they have their lives and homes, their experience allows them to move into very lucrative roles at biotechs or in research, if they are unhappy with their work quality of life.

And, while doctors are offered incentives to meet with pharmaceutical reps and prescribe Rx inhalers, a good doctor will first try you out on a sample of a drug before prescribing it to you. Plus, if you ask them about WHY they are prescribing a specific inhaler, they should be able to tell you. If they can’t tell you, then you need to pushback until you understand why you’re taking something.

When I asked my pulmonologist about the “why”, he gave me a detailed explanation about inflammation of your lungs, and how the long acting beta argonists are their best guess for avoiding the complications of COPD (colds, pneumonia) by fighting to keep the inflammation to a minimum.

With all that being said, I find the side effects from many of the COPD medicines to be worse than doing without the Rx’s.

While I am not a doc and this is not medical advice, if you can’t afford your meds, I’d write to the manufacturer to see if you qualify for discounted or free inhalers.

Additionally, I’d talk to the docs about what your triggers are for exacerbations, and see if taking the anti-inflammatory drugs on a seasonal or occasional basis has any value to helping you stay well.

Please read the package inserts on your medicines, too, as failing to take them as prescribed, or tapering off without being under medical supervision can also lead to possible complications.

Butting out now. I hope this perspective helped in your discussion.

posted January 27, 2018
A MyCOPDTeam Member

Whoops didn't finish. are slow long time acting. They contain the medications and cortisone.

posted January 24, 2018
A MyCOPDTeam Member

@A MyCOPDTeam Member -- Yes, you can write up a storm, but what you say is thoughtful, clear and full of truths of varying comfort. Sometimes my partner has been resentful that we never married, but the fact is, I think, that in another very real way she likes the way things are with two separate houses one block from each other in a historic downtown neighborhood on the Gulf Coast. We both enjoy a lot of "me time," as you noted about yourself. We mainly get together each evening, have a martini, eat dinner and scream at the TV news. My chief concern is the rather sudden onset of this illness has robbed her of so many things she wanted to do in her retirement years, because I don't really feel like doing much. It's not so much at I absolutely cannot do things, it's just that doing those things when you're not feeling so well is not that enjoyable. Of course, I had great plans, too. I'm 65 and she is 7 years younger than me and healthy. I could go on and on, but I think I wlll stop for now. One last thing, my PCP also suggested counseling to me, but I never followed through. Cost could be a greater issue than any doubts I might harbor about the efficacy of professional help. Have a great day, I hope you feel well and please writer as often and as long as you wish.

posted January 31, 2018

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