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Ofev may reduce risk of death in patients with IPF
Treatment with Ofev (nintedanib) may reduce the risk of death in patients with idiopathic pulmonary fibrosis (IPF), Boehringer Ingelheim’s clinical trials indicate.
Read more here: #ATS2018 – Ofev May Reduce Risk of Death in IPF, Has Safe Profile, Trials Show
Have you heard of or tried Ofev? What are your thoughts on this news?
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4 Replies
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Has anyone taken Ofev or been involved with the trial? My son’s doctor wants to enroll him when it is approved for children, possibly in 2020.
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Hi Rayna,
Nice to hear from you, thanks for writing! I am on Ofev, and a few other folks are as well, although I am not in a clinical trial for it. Are you referring to a specific trial? You can search the bar (top right-hand side of the forums) for ‘clinical trials’ and all correspondence regarding those will come up in the forums. I know some folks are on trials, but I don’t know if it it is for Ofev. Feel free to reach out regarding this drug if your son starts it, I am on it and would be happy to help or answer any questions.
Kind regards,
Charlene. -
Hi Charlene, it has not been approved for use in children yet. They are starting trials with children hopefully in early 2020 and my sons doctor wants to get him into that ASAP.
She told us that it can possibly reverse the fibrosis but from what I’ve read I can only slow it down. What has your outcome been so far on this medication?
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Hi Rayna,
Thanks so much for getting back to me and sharing this information with me. I didn’t know about Ofev not being approved for children yet, wow! I am hopeful the trials in 2020 go well, as it seems to be effective in slowing down the progression for me, or at least I think it is anyways. Per my recent PFT results, some areas have declined but not by much (a couple of percentages here and there) but compared to the rapid progression of this disease in other patients, I consider that a success. I suppose I don’t have anything to prove it has been the Ofev that is helped, but I suspect it is.
I would definitely question the physician about reversing the fibrosis, as what you read is correct: it slows it down, but doesn’t stop it. I suspect the doctor may have accidentally said it can reverse the fibrosis instead of just slow it down. There are currently no treatments/cures for this disease and nothing stops the fibrosis unfortunately. Double check with her though, but what you read is correct in terms of it just slowing it down. Report back if you find out anything different 🙂
Thanks,
Charlene
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