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IPF - early stages of diagnosis...so many questions

Lung Health | Last Active: Jan 6, 2023 | Replies (8)

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@george6768

I was diagnosed with pulmonary fibrosis one year ago based on CT scans and breathing tests. One doctor immediately told me to start taking a very expensive pill called Ofev. With Medicare Advantage insurance it cost me $3,000 for one month supply and then dropped to about $899 per month. Worse than the cost, however, were the possible side effects. So I decided NOT to start on this drug. Another specialist agreed to hold off on the drug and my second breathing test indicated to him that I was "stable." I am scheduled for another breathing test in the next week so I'm keeping my fingers crossed that I remain "stable." I do not hook up to oxygen at all. I walk the golf course (9 holes) even in the winter months when the fairways are very wet in western Oregon. I take several medicines already for other issues -- allergies, thyroid, cholesterol -- so I really don't want to start on Ofev. Any advice from this support group.

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Replies to "I was diagnosed with pulmonary fibrosis one year ago based on CT scans and breathing tests...."

I'm glad you're doing well all things considered and can still get out on the course. I'm gathering that the key to keeping the disease at bay is to manage any inflammation. Our Dr said hubbys inflammation is whats causing progression. Im guessing they already had you try prednisone? I did some digging on IPF and found that NSIP is very close in symptoms at first glance and IPF can be misdiagnosed if a biopsy is not done to confirm. Our Dr agreed and has hubby going for a biopsy and if its the cellular version, hes planning to prescribe 60mg of prednisone for about 3mo to kill the inflammation. If its the other version, fibrotic, he will be put on autoimmune/ antifibrotic meds. You're price on the meds is outrageous! I spoke to a woman yesterday who said she worked with insurance and "CVS specialties rx" and they got the price of her meds down substantially. Good luck on your follow-up!