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Stopping OFEV after 33 days
I was diagnosed with RA in 2022 (at age 69) and with Stage 2 IPF in January 2025. I began 100mg OFEV in mid April. After the 1st week I began to experience excessive fatigue. the pleuritic pain I’ve had in my chest/ribs since Jan. (which led to my diagnosis) got progressively worse. I have experienced bad back pain (I do not have back problems nor injured myself). I had a number of episodes of severe right sided pain that the pulmonolgist and my PCP thought c/b gall bladder. Sonogram said all organs normal except for a small pleuritic effusion. My joint pain increased a lot. I had a complete loss of appetite — hard to even choke down applesauce or mashed potatoes… Mind you, I have never had nausea, vomiting or diarrhea on the OFEV but I felt SO unwell and in pain that I couldn’t function. I stopped the OFEV 3 days ago, let my pulmonologist know, and am feeling SO MUCH BETTER in all respects. (I do use O2 when in motion).
Anyone else have anything similar? Just curious. (And not suggesting anyone stop their medication, but this was right for me.)
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3 Replies
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I was diagnosed in 2021 with IPF and the doctor did a lung biopsy on me. I don’t recommend getting a biopsy because afterwards my left lung is worse since the surgery! I was put on Ofev 150mg twice daily but I stopped taking it after just two days. I was working as a teacher and after taking the Ofev I became very lightheaded and had to go to the school nurse for help. She said my blood pressure was 197/96 and that was probably why it was so high! I stopped taking it medicine and everything went back to normal! I hate taking meds so I did some research on natural health and started the Carnivore lifestyle. I’ve been on Carnivore for almost two years now and I feel so much better! I still get a little short winded, but I’m doing well!
Maria Donihoo
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I took ofev for six months the diarrhea was too much for me…so i switched to Esbriet and no more diarrhea for past two years,,, has some other side effects but not as bad as diarrhea
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I took Ofev for three months. Had issues with diarrhea, appetite, energy level. Had one event where I felt nauseous and past out. This had never happened to me before. My blood pressure was extremely low when I came too and the rescue team arrived. I have heard of Ofev affecting blood pressure. I stopped taking it. It has been two months. No diarrhea, eating too much, more energy and no incidence of low blood pressure.
I am 78. Was diagnosed at 76.
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