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2.2 Overall Rating

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Most voted positive review

37 People found this comment helpful

I have been diagnosed with IPF, fortunately early in the disease progression. I was on Esbriet, and it caused severe fatigue for me. My pulmonologist switched me to OFEV, and I feel MUCH better. Minimal side effects. Lung functions have been stable for 6 months. I'm so glad I have the opportunity to take something that may extend my life and my healthy years!

Most voted negative review

7 People found this comment helpful

Diagnosed Jan 2016. Started OFEV almost 3 months ago. Age 64, at 170, b/p avg 105/64 . Working, I don't know yet. Absolutely no side effect's. I think general health and weight my be causing some side effects for others. I'm trying to stay healthy enough to kick IPF's butt.

Shared reviews and ratings

Anonymous | 65-74 | Female | On medication for less than 1 month | Patient
8/2/2022
Condition: idiopathic pulmonary fibrosis
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

Only been on the drug for three weeks but I have a lot of energy and my cough is almost gone. I have a bit of diarrhoea but that’s easy to control so far. I have a nap in the afternoon most days, I know its early days yet.

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Gma | 65-74 | Female | On medication for 1 to 6 months | Patient
3/1/2022
Condition: idiopathic pulmonary fibrosis
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction

Never had heart problems.After 3 months of taking ofev I got congestive heart failure. I was taken off ofev. Also had loss of taste.

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Ray P | 55-64 | Male | On medication for 1 to 6 months | Patient
2/8/2022
Condition: progressive fibrosing interstitial lung disease
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

Three weeks after starting I began seeing my overall fatigue level increase and I saw my shortness of breath increase. So much to the point that after 3 months I would be out of breath just getting up for work and getting dressed. Have stopped it now hoping to get back to where I was. I was working out regular and walking 2 miles about 3 days a week before. Now i'm lucky to get 1 mile without taking a break half way

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Patrick | 45-54 | Male | On medication for 1 to 6 months | Patient
9/6/2021
Condition: idiopathic pulmonary fibrosis
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I have been taking this medication for 5 months after a while it caused severe diarrhoea I was nearly ready to quit however I have found taking one Imodium each morning and eating a banana with both doses as well as taking a broad spectrum Probiotic daily has really helped and the diarrhoea has stopped completely I’m very happy now I would recommend anyone with diarrhoea to try this

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michael | 65-74 | Male | On medication for 1 to 6 months | Patient
9/6/2021
Condition: idiopathic pulmonary fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

today is 9-6-2021, still having diahrea after stopping use. used from 4-18-2021 to 5-20-2021. not a happy camper

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Linda | 65-74 | Female | On medication for 6 months to less than 1 year | Patient
12/29/2020
Condition: Lung Fibrosis
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction

Been on for 8 mos. Was very slow progression until started Ofev. All symptoms are much worse, cough breathlessness, etc. Not slowing it down. Nauseated all the time. I question this drug & am stopping taking it.

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Linda | 65-74 | Female | On medication for 6 months to less than 1 year | Patient
12/29/2020
Condition: idiopathic pulmonary fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

My PF had been progressing very slowly over years. Was put on Ofev & all symptoms got worse, cough, breathlessness, etc. Feel nauseated most of time. Has not slowed it down. I Question this drug & will stop taking.

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Liz Beth | 65-74 | Female | On medication for 1 to 6 months | Patient
1/4/2020
Condition: idiopathic pulmonary fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

PF for many years. On OFEV for two months. All of the side effects, no discernable benefit. Made me feel horrible, gave me bad diarreah, nausea, side pain. Discontinued use. Spoke to OFEV directly, they agree it does not help breathing at all, it only slows down the progression of the disease. Useless when my breathing is so bad. Who wants tolive longer like this.

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roxy6 | 65-74 | Female | On medication for 1 to 6 months | Patient
12/17/2019
Condition: Lung Fibrosis
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction

Seven weeks on Ofev for Pulmonary Fibrosis. All of the side effects (feel generally horrible; back and abdominal pains, dirreah), no benefit so far. I may be too far gone for help. Have had PF for years.

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Ranger1 | 55-64 | Male | On medication for 6 months to less than 1 year | Patient
6/10/2019
Condition: idiopathic pulmonary fibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with IPF in August of 2018 and after taking prednisone for a bit my Dr switched me Ofev. I've been on this therapy for a while now and according to my pulmonary Dr my lungs have not worsened although they are stable for now.

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Lee | 65-74 | On medication for 1 to 6 months |
4/6/2019
Condition: idiopathic pulmonary fibrosis
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction

I am a 65 year old male diagnosed with LUPUS and IPF.I have been on all the other drugs used to teat both and OFEV is my last option.I have been taking it about 6 months now and have gotten worst but not sure if progression has slowed or accelerated.I have been loosing muscle mass but not sure if it is from OFEV.I am suppose to use supplemental O2 but still working and push myself beyond limits maybe I shouldn't.Not a sitter and OFEV does cause me extra fatigue,some diarrhea,raised my blood pressure and causes me to have loss of appetite and periods of headaches.Having LUPUS flareups and IPF it is hard to tell if medication or disease are the cause.Only option left for me is lung transplant which I have already told my DR's is not an option I would do.God bless to all and hope this helps others. Read More Read Less

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Marathon Man | 55-64 | On medication for less than 1 month | Patient
12/24/2017
Condition: Lung Fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

I have Lung Fibrosis caused by a prescription medication. So not exactly IPF. Age:63. Previous health: Excellent . I started on Pirfenidone (Esbriet) and a 2 month trial of high-dose steroids. They were tolerable, but did nothing objectively, according to the PFT tests, so I was switched to OFEV about a month ago. It was OK for the first two weeks, but now I have no appetite, a bit of weight loss, loss of energy, fleeting nausea, loose stools, bloating, general malaise and occasional right sided headache. That is hard to chalk up to pure chance. And my cough is worse then last month (on Pirfenidone), so I may have to go back to Pirfenidone.I have to rate this drug (OFEV) as barely tolerable and of unknown effect on my lung fibrosis after brief use. IF I KNEW that it was slowing the fibrois, I would be more willing to adapt to OFEV. Looks like Lung Transplant for me, if I am eligible. I cling to HOPE.Read More Read Less

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Anonymous | 55-64 | On medication for 6 months to less than 1 year | Patient
5/17/2017
Condition: Lung Fibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I have been diagnosed with IPF, fortunately early in the disease progression. I was on Esbriet, and it caused severe fatigue for me. My pulmonologist switched me to OFEV, and I feel MUCH better. Minimal side effects. Lung functions have been stable for 6 months. I'm so glad I have the opportunity to take something that may extend my life and my healthy years!

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J.B. | 55-64 | On medication for 1 to 6 months | Patient
12/20/2016
Condition: Lung Fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

Diagnosed with pulmonary fibrosis in July of 2015. Treated with steroids....no problems. M.D. changed me to Ofev in July 2016, Was still taking a low dose of Prednisone at the time. Once I stopped the Prednisone. The mild diarrhea became much worse. Then came the loss of appetite and weight loss. Became very weak with muscle and joint pain. I sleep on a wedge anyhow, acid reflux terrible, abdominal pain, fatigue, my cough got worse, nausea and vomiting with no warning. Decided I couldn't take any more. I no longer had quality of life. Stopped it. Within two day my appetite was back, I was less fatigued, no nausea, no diarrhea, no vomiting and my cough was better. Tired of being a guinea pig. Read More Read Less

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Texsardo | 55-64 | On medication for 1 to 6 months | Patient
9/9/2016
Condition: Lung Fibrosis
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

Diagnosed Jan 2016. Started OFEV almost 3 months ago. Age 64, at 170, b/p avg 105/64 . Working, I don't know yet. Absolutely no side effect's. I think general health and weight my be causing some side effects for others. I'm trying to stay healthy enough to kick IPF's butt.

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Jimbo | 55-64 | On medication for less than 1 month | Patient
8/16/2016
Condition: Lung Fibrosis
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

Started taking Esbriet in a 2014 trial. My IPF progressed to a point where my doc changed to OFEV (Aug. 2016)to see if it would work better Esbriet was 9 pills a day (267 milligrams) Ofev is 2 pills 150 mg. Esbriet would put me to sleep after about 30 minutes. With OFEV the only side effect I have is a rash which I treat with Benedryl. Maybe Esbriet works? maybe Ofev works? we do what we can, but It is really just in God's hands. My prayers to all who suffer with IPF.

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barbie | 75 or over | Female | On medication for less than 1 month | Patient
8/15/2016
Condition: Lung Fibrosis
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

placed on drug by lung specialist after 3 weeks taken off due to constant bathroom trips Passing out dizziness weakness Ofev reversed the charge to blue cross for second prescription and non effectiveness and patients request

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Anonymous | 55-64 | Male | On medication for 1 to 6 months | Patient
5/30/2016
Condition: Lung Fibrosis
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

I was diagnosed 12/2015 and have been taking Ofev for 4 months. efficacy unknown; maybe a fresh CT scan will tell. Fatigue and mild diarrhea.

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Sid | 65-74 | On medication for less than 1 month | Patient
5/14/2016
Condition: Lung Fibrosis
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

I'm in my third week of taking Ofev, 150mg 2XDay. I was diagnosed with IPF in 2009. Put on Oxy then. My last CT scan (Jul 2015) indicated honeycombing had started. I was hesitant to start a new med that was fast tracked to the market that offered no cure. I finally agreed to start recently, three weeks now. I've had the terrible side effects that everyone describes. I can't imagine existing in life where I stay on the toilet about the same amount of time I sit in my recliner. That's about all I'm able to do now. I'm calling my doctor Monday to let him know I won't be needing a refill.Read More Read Less

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breathegood | 35-44 | Male | On medication for 6 months to less than 1 year | Patient
3/4/2016
Condition: Lung Fibrosis
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I have IPF, and I have been on this stuff since it was released by the FDA. TIPS from a career troubleshooter: - If you are not skinny yet, get there. I lost 100lb on the 30/10 diet and it made a gigantic difference in my breathing! - You have to take Ofev with a decent meal. - You need to have 12hrs between doses or you better be close to a bathroom. - Sleep on a wedge pillow to avoid acid reflux. Who knows if it's working. I just thought I would share what I have learned. Avoiding ALL acidic foods like tomatoes, because acid re-flux could be the cause of IPF? Read More Read Less

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