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Split Ofev doseages
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I would suggest that you try taking one Imodium per day to help with the diarrhea. I did and it helped. I take one every day and on Sunday, Tuesday, Thursday and Saturday I take an additional one half Imodium. After several years of experimenting this works best. If it gets too bad I skip an ofev dose but not very often, maybe once a month. I have also found that taking the ofev doses exactly 12 hours apart helps control diarrhea.
I was diagnosed 4 1/2 years ago.Good luck on your journey.
John
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I took ofev for 2 years with nausea/diarrhea. Stopped in December. I discussed with my pulmonologist- he reduced me to 100 twice a day.
Feel like I have my life back.
Unrelated but currently having GI problems with pituitary. (Hope not result of ofev).My next pulmonary doc appt in August. I’ll report back with news.
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I have moderate IPF and recently tried Ofev, 150 mg, twice daily. Unfortunately, for the few weeks I was on the medication, I was very sick. I was nauseous and had to spend much time in the bathroom with diarrhea. I was dizzy and very lethargic. I was also in bed a lot. I could not stay awake. I was not well at all. All these symptoms came to me prior to getting off from Ofev. I began running a fever a few days after stopping Ofev and was admitted to a University of Florida (Go Gators!) emergency facility for evaluation. I was dehydrated and the blood test indicated an unacceptable level of enzymes in my liver. Other than that, the ER doctors were puzzled as to why I was so pale and why I was running a fever. I was sent home with orders to drink more fluids and was prescribed an antibiotic for what may have been a bacterial infection. One of my doctors at UF Shands advised me to stay off Ofev until a determination could be made about my condition. At a recent doctors appointment, I agreed to try the lower dose, 100 mg. I’m still waiting for approvals. Wish me luck. Also, good luck to all who are having crazy symptoms from the meds. I no it slows down the progression of the scarring, but now I wonder at what cost?! I feel pretty good right now not being on the medication. I’m 67 years old my current health situation, I am not a good candidate for transplant.
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I was taking OFEV for a year. Was diagnosed 3 years ago. I am a woman, 82 years of age. The OFEV was destroying my life. Went to a new pulmonologist and he took me off altogether. I feel near normal. That was 2 years ago. I made the decision to have a better quality of life than constant explosive diarrhea and chronic fatigue. Have had one bout where I took Prednisone. For what it’s worth!!!!!
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I was taking Penicillin as prescribed by my dentist for surgery. On OFEV 300. I was shocked when all my side effects DISAPPEARED for a solid month! Unfortunately they are back. I mostly have the bathroom issues sort of under control. I feel bad a lot of the time so I just try to “sleep it off” if you know what I mean.
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This is an interesting discussion. I was diagnosed with IPF in January and prescribed Ofev in April. Had a second opinion at a research center in June with same recommendation. I have been reluctant to take drug due to side effects since I am active and still traveling across country to see family and some vacation travel. I’m in a mild to moderate stage with little change in PFT in 6 months. Have been wondering how people manage to stay on the drug and enjoy life. Hoping to come up with a winning combination since I am 77 and don’t want to spend my years left in misery from bowel issues along with trying to breathe. Thanks for this discussion it will help me decide along with fervent prayer. Fran
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I an 74 and on OFEV 300ng daily. I have been able to to improve my situaion by takin 1/2 Immodium daily. I stiil have to go at least 3 times daily. I am up until midnight and find that I need to be home typically from 11 am to 3 pm most days. I make all my appointments late afternoon. If i know that I have to be somewhere earlier than that I skip OFEV the day before. Hope this helps!
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Fran on OFEV for 2 months. No issues yet except the high cost. I am looking for an alternative to discuss with my Doc.
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If your Dov comes up with an alternative, other tha Esbriet, please let us know. I haven’t started yet, because I am waiting to see if there is help available. I am aware of the foundations and various other possibilities.
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I was taking 150 mg twice a day. Morning and night. I have lowered to 100mg twice a day per Dr orders. This helps cut down on side effects for me
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Regarding the “high cost” have you contacted BI, they have a program to help with payment and some even quality to get the meds, free from them. I have been on for 2 years now and it’s really nice.
Also i am reading here that many of you are diagnosed and then go on the OFEV with in a 3 month period of close to it, I was diagnosed in 2016 and did not go on it until 2019….why have many of you gone on so quickly? Has your case progressed that fast? Curious
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