Thank you all for the information. I was diagnosed with UIP in January 2022 and started taking OFEV in April. Every time I think I have the diarrhea symptoms under control, it comes back with a vengeance! If you could please give me pointers on what I should and shouldn’t eat I would greatly appreciate. I have also had severe lower back pain… Read more

I have a few “Happy Places” that help me relax and unwind. I am a recently retired elementary school teacher of 35 years and I am not used to having so much free time. In the middle of my first year of retirement, I was diagnosed “accidently” with UIP  and I had to undergo my very first surgery ever…a lung biopsy, chest tube and all. Luckily,… Read more

I have just been diagnosed with UIP, usual interstitual pneumonia, in January 2022 and am now taking Ofev since April. That, in itself, has been a rough ride! I am/was always healthy and have never had any type of surgery until I had to have the lung biopsy operation. This has really shocked me and I have been racking my brain trying to figure… Read more

Thank you for replying. I will be having my first PFT in August so I am anxious to see how that goes. I have no idea what an HRCT is but I’m glad your health is moving in a positive direction.

Do you know the cause of your condition. I have been racking my brain trying to figure out where this UIP came from. I’ve never been a smoker but I do… Read more

Hey Gina,

I see on this forum that most of the posts are 4-5 years old but I was just diagnosed with UIP in the beginning stage in January 2022 . I just started taking Ofev 150 mg the first week in April and have been working through the side effects. The worst part was the diarrhea but I think I have it figured out. I was prepared for the… Read more

Sneaky, serious, unpredictable, frustrating

Thank you Kari for sharing your story…it sounds very similar to mine. I too had a bad cough but I felt well enough to still go to school. I attributed it to allergies/bronchitis…I am going to try the OFEV and see how it goes. I will continue to do the things that make me happy, walk, hike, kayak, ride my ebike until I can no longer do… Read more

Thank you Paul! I intend to do exactly that! I have just recently retired from teaching elementary school and then this diagnosis reared it’s ugly head. Blew me away. I love to walk/hike, ride my ebike, kayak and am adding snow skiing next week. I will begin taking the OFEV when I get back on April 10th! Thank you for the advice!

Thank you Doug, for your advice on the Ofev. It will really help me get started…after my trip to Colorado with my grandson.

Thank you Tom! I will keep that in mind. Take care!

Thank you Christine for your advice. You are the first person that I have talked to about the other medication. My pulmonologist said that one causes more nausea and vomiting and the Ofev caused diarrhea, so I chose it. I guess I will see soon. 

Enjoy your trip Adelaide because I certainly intend to too. I don’t need oxygen yet but it sounds like a lot of people in the forum already do.

Thank you Rachel for sharing your husband’s experiences. I never even thought that going to Colorado would effect my breathing worse than it does everyone elses. I do not have the need right now for extra oxygen but I will keep that in mind. Plus I will keep a list of the probiotics and food advice you shared.

Thank you John for your advice. I hadn’t heard that the side effects don’t always show up right at the beginning,,,it’s nice to know though. I will also take notes of the food to eat that may help if and when they occur. Best of luck to you.

Thank you Patrick. I did go through a pulmonary function test before going in for the biopsy. I honestly don’t know my score but it must have been bad enough to proceed with the surgery. I will find out that score and that will help me keep up with the progression.

Thanks for your advice. I have a pulmonologist and have had a biopsy and diagnosed with IUP. I will certainly consider all of it.

Oh wow!  I was thinking that everyone on forum was on some type of medication. I have been to my regular DR, a rheumatologist, a pulmonologist and had a biopsy and they all agreed that I was at the beginning stages. Thank you for your input.

Thank you…I’m not really worried about the progression since my case is in its beginning stages. I was more worried about the side effects. I spoke with my pulmonologist and he said it was fine but I was wondering more about your experience with the side effects. I just want to be ready for anything.

I appreciate your  response and any other advice.

Yes I had lung biopsy surgery mid January and was diagnosed with Usual interstitual pneumonia…UIP. For the last 2 months Ive been trying to get approval from my insurance company to pay for the Ofev. I just got my first bottle on Tuesday. I have a family ski trip planned for the first week in April… I am thinking that I will wait until then… Read more

I was diagnosed in January 2022 after accidently seeing scarring on my lungs from a CT scan for a swollen gland. After lung biopsy surgery, I was diagnosed with the beginning stage of Usual Interstitual Pneumonia. It took 8 weeks for my insurance company to agree to pay for expensive OFEV and I just received my first bottle a few days ago.… Read more

I have just been diagnosed with interstitual lung disease in January and I just received my first prescription of OFEV. I am very nervous about tthe side effects of taking the meds but I know I need to.

Anyone have advice on what to or not to do when first starting?