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Annette replied to the topic How do you deal with dyspnea? in the forum Diagnosis Information and General Questions 11 months, 1 week ago
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…[Read more]
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Annette replied to the topic Self-care: What’s Your “Happy Place” in the forum Join the Discussion: Welcome to all PF/IPF Patients 11 months, 2 weeks ago
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…[Read more]
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Annette replied to the topic Rare Disease Patients: We're in This Together in the forum Join the Discussion: Welcome to all PF/IPF Patients 11 months, 3 weeks ago
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…[Read more]
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Annette replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 11 months, 3 weeks ago
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…[Read more]
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Annette replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 12 months ago
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…[Read more]
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Annette replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
Sneaky, serious, unpredictable, frustrating
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.…[Read more]
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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!
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
Thank you Doug, for your advice on the Ofev. It will really help me get started…after my trip to Colorado with my grandson.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
Thank you Tom! I will keep that in mind. Take care!
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
Thanks for your advice. I have a pulmonologist and have had a biopsy and diagnosed with IUP. I will certainly consider all of it.
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Annette replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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.
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Annette replied to the topic When is anti fibrotic prescribed by the physician? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
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.
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Annette replied to the topic When is anti fibrotic prescribed by the physician? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago
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…[Read more]
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Annette started the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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. I…[Read more]
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