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COPD Study Advice?
Hey all, new to this forum and wanted advice on if anyone has ever done a COPD study before? I'm in north dallas and my pulmonologist recommended me to join one because my COPD is pretty bad and has been getting worse over the years. I'm a bit reluctant because it's a medication that's not on the market yet, but my current inhalers are so expensive and this one is free and they are even compensating me for my time. Does anyone have any experience with this? If so, did you find that it helped you overall and any negative side effects?
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I would be interested. I am late stage COPD and on oxygen 24/7. Anything to help those who can benefit from my experience. Talking to like minded friendly people can only help!
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3 ReactionsI’m in a clinical study now for my chronic bronchitis. Been in since May 2023. Study ends this May.
There’s always a risk when applying for a clinical trial but there’s a risk taking certain meds, too. Do your research - use your browser to look for name of drug, inhaler, pharma co. procedure . Talk to the docs and nurses. As soon as this study is done I will look into any new trials and discuss with my pulmonologist - who’s awesome.
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2 ReactionsBtw both my pulmonologist and my pcp believe I got the real treatment after listening & looking in my lungs! So yay. Thanks be to God.
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1 ReactionClinical Trials are great, however, there is always a chance that you will be in the placebo group! My concern would be that if I did end up in the placebo group then I have lost valuable time, as most are about two years,
when I might have been a candidate for a different treatment option to improve my quality of life. Perhaps you can discuss other options with your pulmonary physician. Regeneron is on the cutting edge of a new drug for COPD and there are several large medical centers that offer lung reduction procedures/surgery.
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1 ReactionDo you have any more information about regeneron?
So there are quite a few different ones he has with COPD shots and inhalers. Just a little overwhelmed with the choices and yes the whole placebo thing. He was saying that for some of the studies if you have an exacerbation while on placebo, the study lets them move you to the actual drug so that is a plus. Thanks for the pointers
Hey, who's your pulmonologist? I'm also in the north dallas area and would be interested in seeing if I could join a study
Just an afterthought: anyone who did the RheOx clinical trial (for chronic bronchitis) and got the sham treatment, at the end of the study Gala Theraputics, who sponsored the study, would get the real treatment. I was also compensated. Which never was the motivation but nice.
I’m end stage, COPD, I am 79 years old, and have been on oxygen, 24/7, for 6 years. Also on a “Trilogy, I retain CO2, and have severe sleep apnea. and use a nebulizer 5 times a day. I am have been in a nursing, since November, 2022, since I had been living alone, .and had to be hospitalized on the average of every other month, for “flare ups.”!! The last time I was in ICU, intubated, at that time, Dr, and family said I couldn’t live alone anymore. Am well aware that there is no cure, Mine is the result of smoking for over 50 years……
I didn’t mean to rattle on. I hope my story has helped you. God Bless You
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2 ReactionsHey, not sure if that goes against the forum discussion guidelines because i don't think he's affiliated with mayo but would be happy to share that with you you in private message.