-
Being cautious of outdated PF information
There is a lot of information out there regarding idiopathic pulmonary fibrosis (IPF)!
When I was diagnosed in 2016, the first thing I did was sit down and read all that information, and what I read terrified me. This topic has been mentioned on our forums before. However, I think it is beneficial to reiterate it as we’re always welcoming new members. Please be cautious of outdated information on the internet about IPF.
One of the pieces of outdated misinformation that is particularly distressing for patients and their families is the 3-5 year prognosis for this disease. This information was published/released prior to the 2015 FDA approval of two anti-fibrotic medications, which are OFEV and Esbriet. This is not to say that some patients won’t have a rapid progression of the disease within that timeframe; some indeed still might. However, this won’t be the case for every patient. I just wanted to share this word of caution with our lovely forums community as a reminder.
What other outdated or incorrect information have you come across online about IPF?
-
3 Replies
-
Life expectancy is the big one but I have seen various levels of care that are disappointing. Some “pulmonary” PTs are really focused and others do what they need to get by.
Some areas of white papers could be followed up on better – including discoveries in our RNA/DNA that might promote actual healing, not just maintaining – but they take sooo long in the approval process.
Stay well…
Steve -
Hi Charlene,
I have often wished there were a non-partisan, independent organization that could fact-check the entire internet, starting with medical cures that are too good to be true. When I was first diagnosed, my wife, Susan, would burst into tears when I walked into the room because of something she read on the internet.
The stem cell treatments cause me the greatest concern as they are unproven and, in some cases, not safe depending on how they are administered. If a patient does pursue stem cell treatment, it may render them ineligible for a lung transplant.
Finally, the miracle cure claims to use an ancient old-world treatment that often preys on a desperate hope for a cure or treatment. If it seems too good to be true, then it very likely is too good to be true.
Sam…
-
I was diagnosed with IPF in 2016. I asked my Dr about my prognosis. He said 50% won’t live for 5 years and the rest will be on oxygen. Then he said “but we have a new medicine that should help” That was Esbriet which I’ve been taking now for 9+ years. So the new medicines have been game changers! Side effects? – yes but worth it. I am just now beginning to take oxygen occasionally. I am now 85 and aiming for 90.
So while the 5 year prognosis might have been accurate back in 2015, today with current meds, the outlook for IPF patients is MUCH better!
Log in to reply.