What questions do you have about living with PF?

Posted by Community Member on March 17, 2026 at 1:53 pm

I was diagnosed in January 2017 with IPF. I received a bilateral lung transplant in July 2021. I started my journey with a PCP and a dentist. Today, I have about 14 doctors, take 34 pills a day, one daily injection, and a weekly injection. You can read about my experiences in my column.

Have I seen it all? No, but I have seen a lot. Would I do it again? Absolutely.

What questions do you have about living with PF? If you would rather ask without attribution, send me a message here in the Forum. I will post the question without identifying you.

Community Member replied 4 Members · 5 Replies

5 Replies

Community Member

Member

Hello. I love to take vacations with family and friends. I am wondering if it is ok to take a break from Ofev while on vacation. I have no side effects, and wonder if it is ok to have wine with dinner. Since I have no side effects is it even necessary to take a break? If I do take a break, for a week, will the disease progress within the time I am off of Ofev? If I don’t take a break, will having a glass of wine with dinner cause my liver enzymes to fluctuate? Thank you.
- Community Member
  
  Member
  
  I would NEVER stop a medication FOR ANY REASON while on vacation. I know that with pirfenidone (OFEV’s competitor in the IPF space) any break of 14 days + would mean that you would have to ramp up to the full dosage ALL OVER AGAIN as if you were starting from the beginning (1 X 267 in week one, then 2X 267 in week 2, then 3 X 267 in week 3 and finally one pill of 801 mg starting in week 4). If OFEV has a similar ramping up, it might take nearly a full month to get back to your full dosage. Just order enough for your entire trip and tell your specialty pharmacy why you may need those “extra” pills (or begin your trip with a new bottle of OFEV that should last 30 days or so)….
Community Member

Member

Hi dle,

I would suggest you ask your care team first. Not knowing where you are on your journey, it is hard to answer your questions. If you are tolerating Ofev well with no apparent side effects, is there a reason you want to pause it while on vacation?

Regarding whether you can have wine, make your case with your care team. Prior to my transplant, it was acceptable for me to have wine as long as it was not to excess and it did not interfere with my medications.

Sam…
Community Member

Member

Hi, I have ILD/NSIP and I get confused by IPF references vs ILD. This site is pulmonary fibrosis foundation. I’d appreciate you help!
- Community Member
  
  Member
  
  Hi Scherry,
  
  The site is Pulmonary Fibrosis News. The umbrella of fibrosing lung diseases is more encompassing. Pulmonary fibrosis and idiopathic pulmonary fibrosis are both interstitial lung diseases (ILD). NSIP is also an ILD. Lately (several years), the term progressive pulmonary fibrosis has become more common to recognize other ILDs that cause fibrosis. Look at this article on Pulmonary Fibrosis News: https://pulmonaryfibrosisnews.com/faqs/faqs-about-pulmonary-fibrosis/
  
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