Hello, I can’t believe your pulmonologists have not suggested Ofev or the other specialty med that slows the progression. I used to cough really bad. That has subsided. Please get another opinion. I traveled 2 hours to Univ of Fl to get a second opinion and I could not be happier with my team there. Let me know how it goes. Paul B ~ Lakeland, FL

Hey Mack,

I’ve been on 150mg twice / day for 2.5 years.

No major problems, mostly diarrheal issues, which can be managed with diet.

Just saw pulmonologist today, she said my lungs are damaged but stable.

Good luck. Paul B

😖 🍌🍞 😉

I would be cautious to assume the OFEV is the primary cause of lower 02. Definitely check with Pulmonologist.

Will those of us who participated in the poll, get to see cumulative results??
Paul ~ Lakeland

Hi Ron,
Diagnosed 10 months ago. I’ve been on OFEV 6 months. No drop in O2 level yet.
Paul – Lakeland

Allergy testing would be helpful, as it was for me. Peace of mind to know.

Hi David,
I am sorry you have to go ‘underground.’ I feel that as long as I’m masked and 10 feet away from others, I’m relatively safe. Let me know how it goes. Thanks!
Paul B.

Pete, 9am to 9pm works best for me. I’ll have a small snack at 9pm with the Ofev just to be sure my stomach isn’t empty. Paul

Hi Pete, Like Bob, I set permanent alarms on my cellphone for 9am and 9pm everyday. I then also stop whatever I’m doing to take my OFEV. I use the daily treatment journal that came with it faithfully, checking the box and time I took it. Hope this helps. Paul B – Lakeland

Hi Bruce, I started Ofev 2 months ago. I am 69 years old so I’m on Medicare thru United Healthcare. AARP Medicare Advantage Focus. I applied for the BI (maker) grant, but was declined as we are over the income limit. Bottom line – $2,700 for first month, then $600 every month thereafter out-of-pocket. Hope this helps. Paul B – Lakeland

Hi Liz, My PCP had me using Spiriva at first. I thought it helped. Later, my pulmonologist told me that the ingredients in Spiriva have little or no effect on PF, but if I am more comfortable with it, keep using it. She later prescribed Albuterol. I have an Rx for that now but do not need it frequently. Hope this helps. Paul B – Lakeland

I’m 69, live in Lakeland FL. Was diagnosed with IPF 4 months ago. Taking OFEV 150. No nausea, mild GI irregularity. Enjoying life one day at a time. Going to Univ of FL pulmonary dept next week just for confirmation of all tests and bloodwork. My pulmonologist also in Lakeland. No support groups here, but will do zoom group next month. If… Read more

Having had Covid last December, then frequent cough for 4 months, then PF diagnosed, I wonder if the Covid kind of ‘kick-started’ the PF? Has anyone heard of a similar path toward PF diagnosis?  Thanks!   Paul in Lakeland