Pulmonary Fibrosis News Community › Forums › Healthcare Questions › Diagnosis Information and General Questions › After month on 0fev 100; first day on 150
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After month on 0fev 100; first day on 150
Posted by Community Member on February 12, 2023 at 12:42 pmI’m feeling super tired and shaky. Food seems to help a little bit. Will it get better ? Any advice ?
Thanks
Natalie M
Community Member replied 3 years, 2 months ago 6 Members · 5 Replies -
5 Replies
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Community Member
MemberFebruary 12, 2023 at 3:17 pmHi it did for Me but I am just the opposite of You I started with 150 and changed 100. Have been on that for over a year now. Tried 150 for 3 mos. could not do it. Best of luck.
David
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Community Member
MemberFebruary 14, 2023 at 2:31 pmHi Natalie,
I’ve been on the 150mg since August. The fatigue is pretty constant, in the afternoons especially. It just takes more effort to do normal activities. The abdominal cramping and diarrhea is the most difficult side effect that I face. I have a couple of good days and then a day or day and half when I stay in and close to the bathroom. But I’ll accept that if I can have a few more months with my family. I try to stay joyful although sometimes it’s difficult. Blessings to you.
Phil
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Community Member
MemberFebruary 15, 2023 at 11:24 amI was diagnosed in January of 2020. Tried Esbriet but had to discontinue because of severe sun reaction—-even sun coming through windshield riding to Dr. in car—and then Esbriet caused liver numbers to increase.
So stopped Esbriet and started Ofev at 150 mg. 2 times a day in summer of 2020. Too mamy GI problems even with no diary, no fried, no spicy food and taking imodium.
So reduced OFev 100 mg 2 times a day. Still had some GI problems until one pharmacist told me to “pack” protein. By that she said to eat/take protein, then take ofev, then eat/take more protein. I wondered what protein food would have enough grams of protein and how to eat enough. She said get protein drinks to supplement to get enough protein. So I drink 1/2 bottle Boost (20 mg protein) drink, take take Ofev and then the other half bottle of Boost. (Rich dark chocolate is my favorite Boost.) I still take 1/2 tablet of imodium in morning. It has made all the difference in GI problems with 100 mg Ofev 2 times a day. Don’t know if this will work for everyone, but might be a worth a try.
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Community Member
MemberFebruary 16, 2023 at 2:48 pmI can’t complain. 150 for me and my liver panel is clean, no effects yet.
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Community Member
MemberFebruary 23, 2023 at 5:56 pmI’ve been on Ofev now for 3 months. I started out with 150 two times daily. I’ve been on 2000 mg mycophenolate daily also. The side effects have been so numerous and severe that my pulmonologist halved my dosage but hasn’t helped. I’m having abdominal pain, chest pain, diarrhea, headaches as well as other body aches. The mycophenolate causes constipation which is an interesting combination with the diarrhea of the Ofev. I take Ondansetron for nausea but that doesn’t always help. The nausea makes eating difficult. I’ve consulted all of my doctors and they don’t have any answers nor do the Open Door consultation which tell me they are sorry and I should call my doctor. I go back to my pulmonologist in a couple of weeks to see if my lung volume has improved, which I doubt. Not much good news .
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