[Cu]

Can someone please explain to me why so many are taking this drug (or the other one) when: it causes so many horrible side effects, costs a fortune, has only a 50% chance of stopping lung decline, are newly diagnosed with no symptoms, in fact really healthy other than a diagnosis? Why aren’t these f-ing drug companies researching ways to CURE IPF rather than provide a maintenance drug that lines thier pockets indefinitely? The answer is obvious! We don’t need to be sheep who follow thier (and doctors who accept company payoffs) advice to take such a poor excuse of a drug! Let’s fight for a cure, rather than accept this snake oil. I won’t be taking this drug no matter what!

[Cu]

Hi Larry, your pulmonologist is just giving his opinion on your CT scan, the radiologist gives another opinion. Granted they are educated but they are still two separate interpretations. My pulmonologist told me this, because he sees me in person and does not believe what the radiologist is seeing. Scary, I know, but given that information, if your pulmonologist is anything like mine, he would welcome an AI interpretation.

[Cu]

Hi Larry, I’m going to give you a totally different opinion based on my experience and research. An IPF diagnosis does not automatically mean a death sentence, although it certainly can for many. I was diagnosed 14 years ago (also by accident after a ct scan for something unrelated). Since then, I regularly get pf tests and ct scans, which show minimal progression. I am not on oxygen, don’t take any meds and have no symptoms other than some slight shortness of breath. My blood oxygen is consistently 95/96. Other things I experience (fatigue and joint/muscle pain) may or may not be related. Anyway, the worst part for me was thinking I had three to five good years left. (I was 50 when told I had it.) The meds available have many intolerable side effects and won’t cure anyone. Biopsies are very dangerous and will do nothing to change things. Sure you may find a reason, but why put yourself through that? I had birds that could have caused mine. I worked in a plant that used silica, which could have caused it. I had repeated bouts of bronchitis that could have caused scarring My mother had IPF—she died after a fall one week before her 90th birthday-and it could be hereditary. AND, yuk, I smoked for over 40 years, which may be the cause. My point is, why look for a reason when there is no cure? Stay positive and physically active. Take vitamins, try to eat healthy, and have faith that your life is a gift that will end when it’s meant to. Maybe a cure will be found, but until then, I’m not going to worry about it or try to find out why so I can ruin my life with terrible and relatively ineffective meds. God Bless you and all of us who have had this diagnosis.

[Cu]

Hi Everyone, I use red light therapy for several reasons and love it. Platinum LED Therapy Lights has a wealth of information on their site you may want to read. (Not sure why some of you are calling it a laser. It’s not.) So make sure you educate yourself before buying anything. I believe because it works on a cellular level and reduces inflammation, it has to help. Platinum BioMax  is the one I own.

 

[Cu]

Hi Chris, try not to stress about it as there is so much info that can be discouraging. I just wanted to share that I was devastated when I got the IPF diagnosis, but that was a beautiful 13 years ago. I only have mild shortness of breath and have not been on any meds. I definitely wear an N95 when I go anywhere, plus I have all the Covid vacs.  Other than that, my life is “normal” if that can be said during this crazy world and time. Best wishes to you!

[Cu]

Hi Joe. I too freaked out after an anesthesiologist said to me while putting me out for an unrelated procedure “By the way, you know you have pulmonary fibrosis.” I did all the research, got all the tests and continue to follow up with a pulmonologist. The good news is, I have zero symptoms, do not require any special treatment, and have not progressed from my mild diagnosis in 12 years! So please relax and know that PF does not have to be a death sentence. As for the anesthesiologist, I wish he never would have told me! Maybe you can just forget, too. I hope so.

[Cu]

Not really that expensive if you just get one panel, plus you own it so you’re not paying for each visit. From what I understand, consistency is most important so you’d want to keep doing it. I use mine 5 to 7 days a week for 20 minutes each time. That’s all you need for your lungs/face area. Sorry I don’t know about the other type (laser?).