JKU
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I’m also very interested in this new drug. It’s my understanding that compassionate (extended) use is only for people that participated in their trial. Does anyone know if that’s true? I was doing the Beacon trial that was cancelled for safety reasons. It was my first experience in a trial
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I in the early stages of this disease and not on oxygen. I find when snow is approaching my breathing is more labored. Guessing it is due to heavier air. Makes me very anxious and makes me think about the disease more than usual. I try to do things to keep my mind off of it but it’s hard.
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I too am in the Pliant trial. I also take Ofev. I was diagnosed in Oct 2023. I just had my 6 mo trial check up and there was NO change in pulmonary function tests or CT scan. This trial is still ongoing. My side effects are the same as with Ofev. At this point I’m very encouraged!
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The drug company for one of the drugs mentioned in the podcast recently announced they will start the phase 3 trial as soon as they have their max participants enrolled in phase 2b in their attempt to help speed things up. Don’t give up hope. There’s also a possibility of compassionate use for drugs that haven’t gotten to market. Keeping the faith!!
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I’m interested in the same topic. I too am on Xarelto for the same reason and the pharmacist told me I should be OK on both but to watch for nose bleeds, bruising, etc. I start Ofev on Monday.
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Thanks for this info. I’m newly diagnosed and just started Ofev. I also purchased the zinc plus other 2 OTC supplements. Does anyone know if you are suppose to split the daily dose of the NAD + and other supplement into two different times of day or take it all at once?