bessey
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Hi. I am in the Beacon IPF trial by Pliant Labs Inc since April of 2024. This trial is also a double blind study using the drug Bexotegrast. Either 160 mg or 320 mg. It is a Stage 2b/3 trial. Trial ends after one year. I am in my 8th month now. I was diagnosed with IPF in 2020 and am not taking Ofev. I no longer have a cough and my PFTs and HRCTs are unchanged. I am stable. I believe I am receiving the drug based on the absence of my cough now as well as no deterioration in my FVC and DLCO. They will be starting their Stage 3 trial in early 2025 once the last person is enrolled in the current trial. So far reports show this drug is very effective in slowing to stopping the progression of IPF with very little side effects.
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Hi Larry. I was diagnosed in 2020. Last year I realized my O2 sats were dropping while riding my stationary bike. I ended up doing both the overnight O2 Sat monitoring as well as the 6 minute walk test. I found out that at night, while sleeping, my sats dropped to the low 80’s. Also with the walking. I am currently using O2 at 2 litres at night and when walking, I have my Inogen concentrator set at 3. I am currently being followed by the lung transplant team at UCSF and they told me that you must protect your heart. If your sats drop while sleeping and/or exercising, your right heart will begin to fail plus pulmonary hypertension can develop. Please do an overnight saturation test because I’m pretty sure your sats are dropping. I am a retired critical care RN for 40 years. I walk at a fast pace every day for exercise and wear my O2. You want to protect your heart.
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I too am in a Clinical drug trial for a new IPF drug. It’s in Phase2b/3 at present and started in August 2023. Pliant Labs Inc is running it worldwide and is currently recruiting new participants. It is called the Beacon IPF trial and data so far is very positive. It is a double blind study. You have a 2 out of 3 chance of being on either the low dose or higher dose of Bexotegrast. I believe I am on the drug with very mild side effects. Mild diarrhea and intermittent metallic taste. My FVC and DLCO have not worsened whatsoever and my persistent cough is gone. I have been in the study for 6 months. It is a 52 week study. I wanted to share in case someone out there is looking for a new trial. I am not on any of the current antifibrotics that have been around for a few years.
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Hi Tennkin. I was diagnosed with IPF in December 2023. I actually have had it for 4 years based on my open lung biopsy performed in early 2020. A second opinion felt it was not Hypersensitivity Pneumonitis and instead, IPF. My DLCO is in the low 30’s so I do wear oxygen during sleep and when I exercise. Otherwise my O2 sats are 95-98%. I did NOT want to go on Ofev due to all the negative side effects. Instead, I was able to get into Pliant Therapeutics Beacon IPF trial which started in August 2023. It is a Phase2b/3 trial and so far the results are very promising. It is an antifibrotic but does not have any of the negative GI effects. They are actively looking for participants world wide right now. They want a total of 360 and currently have about 90. You should google Pliant Therapeutics and the Beacon IPF Clinical Trial. Centers are popping up all over the USA. I am with Palmtree Clinical Research in Palm Springs California. They are actively looking for eligible candidates. It is a double blind study but 2 out of 3 groups will be getting the drug Bexotegrast at a lower or higher dose. You are most likely eligible to be in this study. It is a 1 year commitment with a total of 9 visits. Just thought you should know.