Will be picking up Jascayd tomorrow so can’t address side effect issues. My pulmonologist prescribed it and the CVS specialty pharmacy called me to say it was approved. I am on Medicare so I have a $2100.00 out of pocket co-pay for all medications. It is apparently in the formulary for my insurance. I’m also on Esbriet that cost me $1800.00…

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I have used an Inogen 5 several times on domestic flights. So far only fly United. I contact United 48 hours prior to my flight. They remind me of how many hours of battery life to have available and to have a signed slipped by my physician that I need the POC while on the flight. The doctor prescribes the setting and I’ve been told that…

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I’ve been on Esbriet for a year. I haven’t lost weight. I am tired but didn’t relate it to the drug. The only side effect that was noticeable to me is sun sensitivity. I wear a wide brim hat, long sleeves and pants as well as sun resistant gloves. I have noticed some nausea when taking the medication and dizziness when I first stand up. My…

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I have heard through the media on several occasions that Medicare Medicaid and social security will not be affected by DOGE. They are looking for fraud and waste. I’m confident that legitimate research will continue. Anxiety over unsubstantiated rumors only enhances our ongoing struggles. I choose to take a day at a time and enjoy my days.

I was diagnosed with IPF in January 2023. I contacted a transplant center in Grand Rapids Mi that is known to perform transplants on those who are denied at other programs. They told me that my age was a deterrent for the surgery since I had not progressed enough for a transplant and my age was a factor. I was 78 at the time. I had a…

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I’ve been diagnosed with PF since January 2023. My pulmonologist had me enter a pulmonary rehab program immediately. I continue twice a week with aerobic exercise and weight lifting. At first, I didn’t need oxygen but as I was monitored by the staff they noted that my oxygen saturation dipped below 87 and told me at that level I needed…

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We are all different. I was on Ofev for seven weeks but had to discontinue the drug due to elevated liver enzymes. After 3 months to allow my liver enzymes to return to normal, I began taking Esbriet. It’s been seven months now and my liver enzymes remain normal. I’ve had evidence of IPF since 2019 but my pulmonologist says I remain…

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I have been on Esbriet since May 2024. I initially thought I would not experience the rash with sun exposure. I was wrong and had a serious rash on my arms, legs, ankles and back of my neck. When I first noticed it, I had an annual skin check with my dermatologist. She renewed my prescription for Kenalog creme to use on the rash. I…

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This is a timely discussion for me. I am not currently on oxygen but flew recently on an hour and 50 minutes flight. After about a half hour into the flight I began having chest discomfort. I checked my oxygen saturation and it was 84. I’m now getting tested for eligibility to receive Medicare reimbursement for oxygen in the home and portable. I…

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I noticed this discussion is a couple months old but just seeing it. My pulmonologist said he didn’t see any reason why I shouldn’t take zinc . In a discussion with the nurse practitioner representing Boehringer Ingelheim, the manufacturer of Ofev , told me the company is studying zinc as an antifibrotic. Hopefully their will be news on the…

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I had hoarseness for 4 months this past spring so went to an Ear Nose and Throat physician. She did a laryngoscopy in the office and discovered my vocal cords did not come together completely. I was sent to speech therapy and was told that my continuous coughing and throat clearing was the cause. After two months of therapy and decreasing…

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This is an interesting discussion. I was diagnosed with IPF in January and prescribed Ofev in April. Had a second opinion at a research center in June with same recommendation. I have been reluctant to take drug due to side effects since I am active and still traveling across country to see family and some vacation travel.  I’m in a mild to… Read more

Dear Gavin,

This is my first post prompted to write due to your concerns related to your difficulties with breathing. I’m newly diagnosed with idiopathic pulmonary fibrosis this past January. Apparently there is evidence of my disease since 2019. I am not on oxygen but have lost 50% of lung capacity. Since late March I have been in a monitored… Read more