Rob1ert Henderson
Forum Replies Created
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I started Ofev in March after my IPF diagnosis. No problems initially, but thing got worse. Diarrhea was a problem, but I dealt with it (large supply of Depends). The bigger problems were loss of appetite (food nauseated me) to the point of losing 25 lbs in 3 months and complete lack of energy (slept a lot, lost interest in most events in my life) Ultimately my pulmonologist had me stop Ofev for 4 weeks. Within days my diarrhea stopped and my energy returned. So what to do? My pulmonologist had no suggestions. After reading thru the Starting Ofev forum, I have learned some things. 1) I started Ovev again, willing to take some risk. 2) I will stop it for a brief period when things get too bad 3) I will look for another pulmonologist to provide a 2nd opinion ( my current one is unwilling to give me any information regarding the severity of my condition or any recommendations). I would appreciate any comments or suggestions regarding my experiences.
Bob Henderson
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I would be very interested, am finding it difficult to get information from my pulmonologist.
Bob Henderson
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I will soon find out. Have been on ofev 6 months. Initially no issues. Over last 2 months have grown increasingly tired, to the point I sleep 10+ hours/day. Recently doing 20 minutes on treadmill & 50 minutes of water jogging 4 times / week. No more, can barely walk 1/2 block. Also can’t eat, lost 25 lbs in 6 weeks. Waking hours spent in recliner staring at tv. Recent spirometer ?? (Breathing) test showed improvement. Pulmonologist taking me off ofev for 4weeks. Others having similar experiences?
bob Henderson
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I have been takin Ofev for 6 months. Normal side effects (diarrhea, fatigue, loss of appetite). Recently all symptoms getting worse. I have lost 25 lbs in 3 months, eat almost nothing, food tastes terrible, significant increase in fatigue (have to use rollator). My pulmonologist has me stopping Ofev for 4 weeks.
I have been reading responses to Esbriet; it’s a mixed bag. The only benefit I can see is the new generic version of Esbriet is much cheaper. Most posts I read from people who switched from Ofev to Exbriet were positive experiences. Except many of the same symptoms (fatigue, weight and appetite loss) were the same. At some level it seems like a crap shoot; different people react differently. Minimal breathing problems, oxygen stays at 95-98. I would appreciate any advice; my life has become diminished (primarily due to Ofev).
Bob Henderson
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Sounds like Esbriet has similar side effects. Has anyone tried reducing the dosage?
bob henderson
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Bill, sounds like you have been down a road I am just starting regarding problems with meds. I, too, can’t eat, have lost weight, and have no energy. My pulmonologist took me off ofev. Doesn’t sound like esbriet offers much of an alternative. Do you think the problems are a cumulative effect? Is your pulmonologist suggesting alternatives? What are your choices? On/off with the drug ? No drug? What are the implications of your decision? Don’t think I can accept the poor quality of life I had with ofev. Would appreciate your thoughts. Bob