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End of ofev treatment
As I have told you I started ofev very advanced with IPF disease. On my 54th day of treatment after my morning dose of 100mg ofev I became lightheaded and tired. We checked my vitals many times both resting and moving about and couldn’t get my heart rate above 70. That may sound fine but with my lungs 105 is more normal with even higher moving. I waited 8 hours and kept doing worse. We drove to the emergency room, it was Saturday and busy, they placed me in front of the line. My heart rate then was 43. The blood work, tests, questions couldn’t come to a conclusion. I missed my evening dose of ofev, my heart rate was coming up, stabilized at 96 and wouldn’t go down. I’ll cut to the end, I came home with a heart monitor order. The next day I took my ofev dose, and rinse and repeat it happened again. I haven’t taken ofev for a few days doing much better. I called my doctor to ask to be taken off the drug but they didn’t call me back. I called the pharmacy and told them I quit and they called my doctor. I now have a brand new bottle of very expensive ofev they don’t want back, probably too expensive 😅. I’m happy for all of you that this drug is working for. I’ve read there were a couple cases where the fibrosis came back aggressive when they stopped taking ofev. Not looking forward to that. Now I have shared my ofev journey. I do continue to pray for all of us with this disease.
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12 Replies
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Sorry Ofev didn’t work for you. I’ve been on it for 14 months with no issues. I’ll get a CT scan and do the PFTs in February. I’m eager to see anything is there are any improvements.
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Not everyone can take Esbriet or OFEV. I tried for over a year in 2018 and both drugs made me painfully ill. After discussing with my Pulmonologist, I stopped taking these drugs. It is now 2024 and I am still alive and my Pulmonary Fibrosis has been relatively stable for over a year. I don’t use supplemental oxygen but I do walk daily for 25 to 30 minutes. The take-away from my brief commentary is each of us is different, exercise helps and maintaining a positive mental attitude may be the best treatment you can give your self. Good luck to you.
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Thank you. I’m glad for the support we have on this forum.
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I have been on Ofev about 2 years. I am relatively stable. I was in the transplant protocol for about 14 mos. The protocol basically let’s you know whether you are in good enough shape to go through a transplant. I am, so they released me from the protocol process until such time as my lungs give out. Anyway, to my point. I am so incensed with pharma that I find it obscene that we have to pay such a high price for our medicines. I asked the transplant doctor how I would know whether ofev is helping me. He said I wouldn’t know whether it is helping or not. Hmmm, charging thousands of dollars a month for a drug that might or might not work… Good work if you can get it. My point is that the only way to know whether it is helping is by going off of it for a significant time (i.e.: between PFTs) to see what changes if anything. I am “lucky” because ofev doesn’t bother me. if it did, I doubt I could justify taking it. Good luck to all.
Temple Mayo
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Thank you for your support. I waited a long time before I would agree to taking the drug because of what they charge. I could get it through veterans or insurance but that wasn’t the issue. I had one pulmonologist finally admit she did get a kick back, she said it was small though. We live in an unusual time Temple. Take care man and keep walking.
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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 “stable.” I use portable oxygen when on a flight and when walking distances. Hopefully I remain stable far into the future as is my hope for those who read this as well as four of my family members dealing with this disease.
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Thank you for your support. I’m good today. Stopped the ofev, feel better no harm no foul. It is a journey for all of us, not always the same. Praying with you.
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When you go to the hospital with an emergency, I guess you must go to the prayer room instead of the emergency room
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Please try Pirfenidone. I was on Ofev and my blood pressure was off the charts and the diarrhea was awful. My doc switch me to Pirfenidone and my blood pressure went back down and I was able to get off two blood pressure meds and the diarrhea stopped. I regained the lost 30 pounds that I lost while on Ofev. I am in my sixth year of dealing with IPF and still stable with no oxygen
I buy my Pirfenidone from Cost Plus Drugs at about 150 USD per month They just had a price decrease. How unethical to kick back to Doctors for writing prescriptions for Ofev. I always wondered why so many were prescribed Ofev to start treatment. It is a dangerous drug
Good luck. Jim
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Jim, I am doing much better now. Getting off ofev really helped me. I know they say they have to recoup their expenses for developing and research. I accept that. I think they probably have by now. It bothers me to read that someone on this planet can’t get treatment because they can’t afford it. The cost of care in this country is high. I would go on but you know my complaint. Take care.
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Sorry to hear about your plight with ofev. I have been on esbriet for 5 years now and have been relatively stable and this may be a better option than just hoping or “praying” as you say.
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Yeah, I don’t think I’m going to try anymore snake oil. I’ve had 7 long years since diagnosed and ipf was first seen in 2014 on an x-ray of my liver. I’m in bad shape now but it comes to all of us eventually. Slowing down isn’t a cure more of a stall. I’ll continue to as you say ‘hope’ for everyone.
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