Generic Name: Ofev (nintedanib)
Ofev Reviews
For Idiopathic Pulmonary Fibrosis "I started taking it 18 months ago, when it came on PBS. I had been diagnosed 18 months prior to that, but trials, etc. said I was not a good candidate for the results they wished to show. My last HCT showed it had stabilized."
For Chronic Fibrosing Interstitial Lung Disease With A Progressive Phenotype "This product has helped me very much, it has slowed my progression almost to the point that I can almost be normal. The side effect of diarrhea was bad, and the hospital pharmacist told me to eat a lot of protein, and it would help with diarrhea. So, I got the Fairlife protein shake with 42 grams of protein, and if you take it with the pill, you should not have any issues. The only other thing is that I have bad burps. But love what it has done for me!"
For Idiopathic Pulmonary Fibrosis "I have been taking Ofev for 13 months. I was prepared in the beginning for what common things to watch for. I will say the drug manufacturer did a very good job. They assigned a nurse to educate me. I have experienced some of the basic issues such as diarrhea, but I feel like my body has adjusted. Two pills a day, so it's pretty easy to use. I just had my scans done and saw the initial results. It appears the fibrosis is stable with no change from the last scan. I have not reviewed with my doctor yet, but I assume Ofev is working. Unfortunately, the scans revealed I have a gallstone, which is a common side effect. Finally, the cost of the drug is obscene. I am able to afford the high copay, but I would venture to say it would be a challenge for many."
For Idiopathic Pulmonary Fibrosis "I began taking OFEV on a Friday and the very next day my persistent cough had subsided dramatically. Although I was made aware of the potential side effects of nausea and diarrhea, I have experienced none of them at all in the 9 months I have been taking the drug. I take 150mg twice a day with food and have had no problems whatsoever. I continue to cough, but the cough is very manageable. I have been able to resume teaching twice per week, speaking for 45-90 minutes each time with little or no interruption due to a sustained cough. However, I still have a coughing fit and that happens usually about once per day. I am still trying to discern whether those spells are due to other factors like a low or empty oxygen tank. When I began taking OFEV, I was on 5L of oxygen, but after the last visit with my transplant team, I was advised that I could probably go without oxygen altogether when working at my desk or just sitting and watching TV. I am on 1.5-2.5L most of the time."
For Idiopathic Pulmonary Fibrosis "I was diagnosed with pulmonary fibrosis and have been on OFEV for two months +. I had a chronic cough and a persistent hack. I was prescribed to take a pill in the morning with food and another pill in the evening with food. I did NOT have the side effect of diarrhea. My biggest issue was sudden nausea and vomiting - I would have to run for the toilet........... !! The good news is that my cough is mostly gone - but to deal with the nausea - I have reduced the dosage to 1/2 pill in the morning and 1/2 pill in the evening. Still have an occasional bought of coughing but over all - I am doing much better."
For Idiopathic Pulmonary Fibrosis "Have just started taking 150mg OFEV (for two weeks now). I feel bilious and throw up approximately 90 minutes after taking the tablet in the mornings with breakfast. The vomiting causes me to throw up the Metformin XR tablet too. I am trying different foods for breakfast. Nighttime dose seems to be okay. I am eating a small amount of sweet potato or rice with my evening meal. The rice seems to work better to soothe my tummy and I can keep everything down. Will consult with the doctor regarding options."
For Chronic Fibrosing Interstitial Lung Disease With A Progressive Phenotype "Started taking this 2 months ago @150mg, 2xday. It has got rid of my appetite and taste. I get mild nausea and some headaches. Worst of it is that I have horrible fatigue. I was feeling fairly well before lung biopsy and starting Ofev. Energy was good with minimal shortness of breath. Now I wake up exhausted. DR considering lowering my dose. I can't yet say if the medicine has been effective til my next scan."
For Chronic Fibrosing Interstitial Lung Disease With A Progressive Phenotype "Have been on OFEV 3 months. I didn’t have any side effects until after my gastric sleeve surgery in February. Now experiencing diarrhea and nausea almost daily. Don’t know if it’s from OFEV or gastric surgery. Pulmonary function seems to be better."
For Idiopathic Pulmonary Fibrosis "I have been on Ofev 150 mg twice daily about 7-8 weeks. Mild abdominal pain, diarrhea, most days several watery stools severe enough I don't leave the house. Mild headaches. Breathing does seem better, cough is much better. I have not had repeat testing done."
For Systemic Sclerosis-Associated Interstitial Lung Disease "I have systemic sclerosis and silicosis, I take 2160 mg of myfortic each day and have been on Ofev for about 18 months 150 mg 2x per day. Oxygen at night and during exertion. Surprised I have a stomach left between both of these drugs. The myfortic has stopped the schleroderma and despite the side effects has helped tremendously. The jury is still out on Ofev. My morning coughing has diminished since taking Ofev but lung function generally remains unchanged. Definitely have gastro intestinal side effects from both drugs but it's better than dying in a few years. I can still work and will retire in about 2 years."
For Idiopathic Pulmonary Fibrosis "I had difficulty with 150 night and morning. The side effects were upset stomach and severe groin pains. The dose has been reduced to 100 night and morning. Now I have no side effects. I feel much better, breathing is better and I feel more alive."
For Idiopathic Pulmonary Fibrosis "First month was fine, none of the side effects they warn of. Second month, the diarrhea kicked in and has not stopped yet. I am in my fourth month now. Just developed the neuropathy it can cause. Looking for a solution on that part now which is why I am on this site. As far as if it is working to stop my progression, I can say my CTs and PFTs have remained stable."
For Systemic Sclerosis-Associated Interstitial Lung Disease "My husband started taking this medication a little over 6 months ago. His breathing has improved and now he can take walks again in the mornings without feeling out of breath. He has experienced no side effects, fortunately."
For Idiopathic Pulmonary Fibrosis "I've been taking OFEV for 12 months. 150 mg twice a day. I went the first two months with zero issues. After that slight nausea and diarrhea set in. I've tried many different foods, bland diets, eating earlier or later before taking my pills etc.. Nothing seems to help the nausea. It's not horrible and it's not all day every day, but it is there most of the time. I do feel that the OFEV has slowed down my IPF. I can still walk a mile on level ground and although I use oxygen when up and about, I can go without it while at rest."
For Idiopathic Pulmonary Fibrosis "I started on the 150 x 2 a day dosage. This was very hard to deal with due to gastro problems every evening. The change to the 100 x 2 a day mostly relieved the nasty reactions. I still need to be very careful with what I eat, i.e. no dairy, caffeine, or anything with sauces."
For Chronic Fibrosing Interstitial Lung Disease With A Progressive Phenotype "I was warned to expect stomach upset and diarrhea. The first night I suffered dry heaves but no vomiting. Ever since, the only symptom I have been experiencing is fatigue. Other than that, there have been no noticeable side effects yet."
For Idiopathic Pulmonary Fibrosis "Easy to use, & effective. First year I took it, I had no side effects. I was off of it for about a year because I had to take a blood thinner for A-fib. Started back on it 2 months ago & having lots of side effects, like diarrhea, nausea, abnormal kidney function. I feel that it really helped me and don’t want to have to stop taking it, but may have to."
"I would say the Ofev has improved my lungs albeit slower than I wished. I have only been taking the 150mg for three weeks. Side effects in the first two weeks were tolerable. In the third week, they are really challenging me. I can't even stand the smell of food, nor can I hold anything down. Zofran does not seem to ease anything, but I will keep trying as I really have no other options other than this medicine, because there isn't anything else out there to help me. Hoping this eases up as I have lost 49 pounds in a month (I was losing weight before the Ofev but at a slower rate), keeping my fingers crossed."
For Idiopathic Pulmonary Fibrosis "I have the chills, loss of appetite, dry mouth! I just don't feel well. I have no energy at all."
For Idiopathic Pulmonary Fibrosis "I have been taking 100mg Ofev twice a day since 09/15/23. I have had no side effects until today 10/24, mild stomach ache and have no energy. Hopefully, this side effect will subside."
For Idiopathic Pulmonary Fibrosis "Terrible side effects, debilitating to me. For the price I would hope that the side effects would be much less."
For Idiopathic Pulmonary Fibrosis "Pretty new right now - have experienced lots of diarrhea - not every day though - not sure yet what I should stay away from. Some nausea & a few headaches - low energy some days too."
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Related treatment guides
- Idiopathic Pulmonary Fibrosis
- Chronic Fibrosing Interstitial Lung Disease With A Progressive Phenotype
- Systemic Sclerosis-Associated Interstitial Lung Disease
