Nintedanib for Idiopathic Pulmonary Fibrosis User Reviews

• dib...
• Taken for 1 to 2 years
• April 8, 2018

Nintedanib "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."

• Lun...
• Taken for 1 to 6 months
• May 28, 2024

Nintedanib "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."

• OFE...
• Taken for 1 to 2 years
• August 4, 2023

Nintedanib "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."

• Ret...
• Taken for 6 months to 1 year
• October 18, 2023

Nintedanib "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."

• Jam...
• Taken for 1 to 6 months
• October 28, 2022

Nintedanib "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 bout of coughing, but overall, I am doing much better."

• MAC...
• Taken for less than 1 month
• January 30, 2024

Nintedanib "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."

• Joh...
• Taken for 1 to 6 months
• November 15, 2024

Nintedanib "I have been taking Ofev for 2 1/2 months. After two months, my condition improved significantly. I can noticeably breathe deeper, I am more resilient, and I am not getting out of breath as quickly. My measurements have improved from 55% to 64%. For me, it's beneficial, I have involuntarily lost 11 kg, probably due to frequent diarrhea. I am still in the process of finding out what I eat or prefer to avoid. However, I have the impression that it plays a lesser role."

• Anonymous
• Taken for 1 to 6 months
• September 7, 2022

Nintedanib "I have been on Ofev 150 mg twice daily for 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."

• JMB...
• Taken for 1 to 6 months
• July 6, 2023

Nintedanib "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."

• OFe...
• Taken for 6 months to 1 year
• June 1, 2023

Nintedanib "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."

• Sch...
• Taken for 2 to 5 years
• December 21, 2023

Nintedanib "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."

• Fra...
• Taken for 2 to 5 years
• May 28, 2024

Nintedanib "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."

• Tex...
• Taken for 2 to 5 years
• June 22, 2020

"Diagnosed Jan 2016 by biopsy for IPF. Started on OFEV March 2016 twice a day. I am 67 and pretty healthy otherwise. I go to the gym twice a week. Still active around the house. Use oxygen only when I have overexerted myself. My O2 sats have leveled off at 94, can't hear crackling in my lungs as bad as it was 2 years ago, and my pulmonologist is very pleased with my PFT results this year. I seem to have greatly slowed any worsening of symptoms. I think OFEV and exercise have given me extended life expectancy."

• Wil...
• December 14, 2024

Nintedanib "I started taking OFEV in January 2023, 150 ml. I have had very few side effects. I have had a few bouts of loose bowel, but I contribute that to something I ate, which I should not have eaten. Other than that, I am very fortunate with no real bad side effects. I have been feeling quite well to carry on my everyday living. It's a blessing to have my life extended a few more years, with very few ill effects."

• Min...
• Taken for 1 to 2 years
• December 2, 2024

"I have been on Ofev since June 22. I had the typical rough start with vomiting and diarrhea. Now I started having the same when I take the second capsule in the evening. The morning one is usually okay. Another thing is my breathing is worse. My blood oxygen goes down, I feel sweaty and shaky. I'm 75 and feel like I'm having a hot flash, I feel a hot wave go over me. Too old for that. I had a hysterectomy years ago. Anyone else start having issues after being on it for over 2 years? All in all, I believe it slowed the progression of the scarring in my lungs. I would probably be worse if I hadn't taken it."

• Joh...
• Taken for 1 to 2 years
• July 12, 2024

"I have been on nintedanib 150 mg twice a day coming up for 18 months, side effect slight diarrhea on or off, just take anti-poo tabs after loose one. On various other meds: steroids, antibiotics, stomach pill, prostate tabs twice a day, 24hr oxygen. My last CT scan shows a slight increase, but I find the best treatment is getting out for my daily walk on the moors no matter what the weather is. Oh, started turmeric not recommended, got very short of breath, stopped taking, and breathing is back to what it was."

• Mik...
• Taken for 6 months to 1 year
• September 18, 2024

"I have been using OFEV for 9 months now. I do not notice a decrease in lung capacity nor any increase in breathing endurance. My symptoms include shortness of breath, fast heartbeat, and a markedly reduced physical endurance for walking. The side effect of diarrhea has been bothersome, and I have not been able to get relief from it."

• 4 g...
• Taken for less than 1 month
• December 9, 2023

Nintedanib "I have the chills, loss of appetite, dry mouth! I just don't feel well. I have no energy at all."

• Ofe...
• Taken for 1 to 6 months
• October 24, 2023

Nintedanib "I have been taking 100 mg 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."

• Anonymous
• Taken for 1 to 6 months
• October 23, 2022

Nintedanib "Terrible side effects, debilitating to me. For the price, I would hope that the side effects would be much less."

• Sk7...
• Taken for less than 1 month
• June 21, 2024

Nintedanib "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."

• SKe...
• Taken for 1 to 2 years
• December 20, 2024

Nintedanib "100 mg 2x daily; easy to use; very difficult, unpredictable diarrhea episodes in spite of strict adherence to suggested dietary plan. Hair loss noted also."

• Rom...
• Taken for 1 to 6 months
• November 5, 2024

"This drug is effectively helping me, also, I've been advised to do gym, keep myself active. It is helping me."

• Dou...
• Taken for 6 months to 1 year
• October 23, 2024

Nintedanib "Have asbestosis. Been taking since June 2024. Makes my legs sore. Can’t hardly walk sometimes. Not sure that it’s made a big difference. 150 mg x2. Grant for max out of pocket. Still taking."

• bil...
• Taken for 1 to 6 months
• October 19, 2024

"I'm coughing less, have less fluid buildup, and breathing easier. However, I do have loose bowel movements, but very manageable, maybe 2 times in one day. I'm taking 150 mg capsules twice a day."