[Annette]

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 and what I believe to be hair loss attributed to the meds.

Thank you!

Annette

[Annette]

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, I had plenty of time to recover without having to worry about school kids/substitute notes etc. I find great pleasure in flowers and gardening. Deadheading is a weed pulling are therapeutic to me and I own way too many house plants! Some people buy shoes, I buy ferns and succulents!

A new “Happy Place ”  that I have recently discovered is riding me EBike! I have NEVER been a runner but I enjoy a good hike up a mountainside, walk in the neighborhood, or even a stroll in the mall. With this new lung “condition” of mine, it has been harder for to participate in these especially in the heat of the summer. I discovered that bike riding on a bike with a rechargable battery to help me up hills, is just what I needed. I had a bike rack installed on my car and take it with me whenever I go near beautiful lakes or shady trails. I still get my exercise in without becoming too exhausted and I feel great when I see how far I have traveled. Throw in my grandson, and I couldn’t be happier!

[Annette]

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 out how this happened to me. I have never been a smoker but my Daddy was…I’m a retired elementary school teacher and I taught school for 35 years in Alabama and Georgia. It is possible that I was exposed to asbestos when I began teaching the mid 80’s. The only other thing I can think of is that I lived in a place for a year and half that was tested and had high Radon which is very common where I live. I’m just trying to wrap my brain around the “new normal” for me.

Any information would be appreciated.

[Annette]

Sneaky, serious, unpredictable, frustrating

[Annette]

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?

[Annette]

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 have seasonal bouts with bronchitis. I also used to live in a place that had high radon count. Not sure about any of that.

Good look with the trial meds. What is it like?

[Annette]

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 worst but it really hasn’t been that bad. Ive lost 15 pounds, which I needed to and it is a good thing. I realized that it depends on what I eat and/or drink that will cause that. Since I am just beginning, I’d like to hear how it’s going with you after doing it for awhile.

Thank you, Annette

[Annette]

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 it. Thanks again and I wish you continued health and happiness.

[Annette]

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!

[Annette]

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

[Annette]

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

[Annette]

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. 

[Annette]

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.

[Annette]

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.

[Annette]

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.

[Annette]

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.

[Annette]

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

[Annette]

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.

[Annette]

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.

[Annette]

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 to start taking it. Do you think that is a good idea? Thank you so much for the information…I am very nervous about all of this.