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Nintedanib
Hello, as a newcomer to the forum I was wondering if I could ask a question on my husbands behalf. He was diagnosed with IPF along with other comorbidities 3 years ago. His doctor prescribed mycophenalate but it has had no beneficial effect and now has a portable oxygen generator. A a recent visit to his respiratory consultant, nintedanib was suggested, does anyone have experience of this medication?
Thankyou
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6 Replies
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Hi. Look at the threads about Ofev, which is the brand name of the same drug.
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I am surprised that you have received no replies on this question until now. I am using Ofev, also known by the generic name nintedanib. If you search this forum for Ofev, I strongly suspect that you will find plenty of discussion on the topic.
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As far as my knowledge as a patient goes, there are only two medicine which may help arrest or decline the progression of IPF. Ninetena or Nintedenib is better than Perfindone. If your patient is able to tolerate Nintedenib, then though costlier than Perfindone is supposed to yield better results. I don’t know how much a strip of ten soft gel capsules of Nintedenib cost in your country but it costs about ten Euro per strip in India.
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Number 1 treatment for Ipf. You can find a ton of information on it. Also. There are side effects that you should familiarize your self with. I was on it for a little over 2.5 years and had to go from 150 2x a day to 100. It is NOT a cure. It will buy you time before a lung transplant. The manufacturer has a great web site and support system as well as financial support. It’s insanely expensive. Best of luck to you.
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I started Ofev 2 months ago and the side effects were too harsh for me. I stopped almost 2 weeks ago, choosing quality of life over quantity. That be said, many people don’t have the issues I had. It’s a try and see drug. Depending on your insurance it can be hard to get and pricey. I was approved to use Accredo and they were wonderful.
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I tried Ofev for a year. I was too sick from side effects to continue. I’m now using Esbriet. No problems. Those two meds are the only ones get info from your insurance company.
I think it helps slow progression but it isn’t a cure.
Don’t waste your time on the cause, take care off the now. Oxygen therapy helps tremendously. Don’t be afraid.
M
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