- This topic has 71 replies, 34 voices, and was last updated 1 year, 12 months ago by
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Yes , I take ofev . Started at 150 twice daily , it was very harsh on my bowels , now I take 100 twice daily
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I started taking OFEV in Jan 2016 150 mg 2 times per day. I was worried about the pills to begin with due to side effects but had none. I even had to take a laxative a couple of times. I am well pleased with the drug and would recommend it to anyone.
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Hi James,
Thanks so much for getting in touch with us and sharing your experience with Esbriet. So glad it has been a positive experience overall for you, and I know others will appreciate hearing this as many folks share a similar worry as you do regarding the potential side effects. Sending you best wishes!
Charlene.
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No but I just started taking esbriet yesterday and immediately noticed the side affects of stomach ache and sick to my stomach. Took a couple of tums and that gave relief.
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Hi Michael,
Thanks so much for getting in touch with us and letting us know of your experience with Esbriet. I certainly wish it was a little easier on your stomach though, and hope the relief is continuing for you! There is a whole forum on people’s experience with starting Esbriet on our site. If you’re interested, you can find it here.
Cheers, and wishing you well!
Charlene.
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Yes.. since January 2017. So far, progression seems to be very minor. No idea if it has anything to do with OFEV though…
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yes. Have been taking OFEV for over two years now and it seems to have worked better than esbriet. I was told that the pulmonary fibrosis was the result of nothing that I had done but it might be a hereditary problem.
Have been under treatment since Esbriet and OVEV were released. Esbriet first, for about a 18 months. Then I started on daily dosage of OFEV of 150mg twice a day. After about 15 months, had to reduce the dosage from 150 to 100mg.
It has done a great jobber me. l do not use oxygen yet, but may need to start soon. Last two month, I seem to have very little energy. Always tired and need to take frequent breaks when trying to do jobs around the house.
I will be 79 next March and I hope to see my grandson graduate from college in two years.ds
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Hi Perry,
Thanks so much for taking our poll and elaborating a bit more on your experience with Ofev. It’s always beneficial to hear from others on this drug!
Were you on both the anti-fibrotic medications Perry? It sounds like Esbriet first and then Ofev overlapped, or did you stop the Esbriet after 18 months and then begin Ofev? Did you have to drop the dose of Ofev due to side effects? Curious to hear the reason for the decrease if you feel like sharing.
Thanks again for sharing, and I’ll keep my fingers crossed that you get to go to your son’s graduation 🙂
Warm regards,
Charlene.
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I currently am on 150 mg of Ofev every twelve hours. I was on Esbriet for about 18 months and then switched to Ofev earlier this year. For me the fact that I became very sun sensitive using Esbriet was the motivation to change. I chase the warm weather (and sunshine) during the winter months so being able to spend time in the sun is a must. With Esbriet, for example on a sunny day here in Florida, I had to limit my pool side time to 30 minutes maximum. When I approached my pulmonologist about making the switch he approved the change immediately. He said there was no empirical data demonstrating that one was better than the other. The only side effect with the Ofev is recurring diarrhea, which I manage to control with over the counter medicine for that problem. And I do like the fact that I take one pill every twelve hours and not nine pills spread out over the day in three pill doses.
Robert Morrison
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Hi Robert,
Thanks for writing and sharing a bit of your experience with us, although I’m sorry to hear it wasn’t pleasant on the Esbriet! I think I’d do the same as you – I love the warm weather and sunshine, especially during the cold Canadian months so I wouldn’t like to have to avoid it due to my medication. Other than that, was the Esbriet tolerable for you in terms of side effects? I’m really glad your doctor was willing to change medications quickly, especially to be able to do things you still enjoy like spend time at the pool. Glad to hear your doctor’s opinion on one anti-fibrotic not being better than another as well, I hadn’t tried Esbriet yet but was dreading it if I had to switch as I wouldn’t want to take all the pills in a day. One in the morning and at night works for me!
Thanks again for connecting with us and enjoy that warm sunshine!
Charlene.
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Hi Charlene,
To follow up, I had no other side effects from taking Esbriet other than sun sensitivity. I was a little surprised my doctor allowed me to switch to Ofev. However, when I asked him why he i.e. Northwestern Medicine, chose Esbriet in the first place, he didn’t really know. I think both drugs were relatively new and Northwestern chose the lease expensive of the two (Esbriet). I think if one or the other proves significantly better, that will become everyone’s first choice. The progression of the disease has remained approximately the same for me despite switching medications. For me the decision to switch was purely a “quality of life” decision.
Robert Morrison
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Hi Robert,
Thanks for writing back and clarifying this for us, it’s always interesting to hear others’ experience in terms of starting on Esbriet vs. OFEV and why. Making the switch for a ‘quality of life’ reason absolutely makes sense! Hope you continue to do as well as possible on the Ofev, after the switch. Enjoy that sunshine!
Charlene.
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I have been on OFEV for almost three years. It is the first and only IPF medication I have used. I live in Florida and bicycle a lot, so Esbriet was a non-starter for me. Of course, the effectiveness of the medication is quite subjective. I do believe that it has slowed progression, but then, how fast would it progress without? Anyway, other than loose stools and some cramping from that, I have been satisfied. I have not yet been hospitalized for IPF related issues. I was informally diagnosed on Christmas eve 2013 with a more formal diagnosis in February 2014.
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Hi Rod,
Thanks for your reply and sharing your experience with Ofev. With being actively outside on a regular basis, I can imagine how the sun sensitivity of Esbriet would be prohibitive. Hope the GI side effects of Ofev aren’t too bad and are manageable for you. Thanks for sharing and wishing you the best!
Charlene.
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I’ve been on 150mg twice a day for 6 weeks now. Thankfully, no side effects at all.My latest spirometry test showed only a marginal 1% decline from 75% to74% FVC and 45% to 44% DCLO, from 3 months ago. So I guess that it good news. However, I am feeling more breathless and tired, so that rather goes against the test results. However, it’s early days on OFEV, so I really need longer to assess the effect.
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Hi David,
Nice to hear from you – are you writing from New Zealand yet? I know you had a trip coming up there to see your grown kids, but can’t remember when you’re headed that way. Really happy for you that you’ve not experienced the side effects of Ofev, that is great! I’ll keep my fingers crossed it remains that way for you 🙂 Glad to hear you’ve also not had a huge decline in your lung function, though I certainly know the numbers “don’t tell the whole story”. Sorry you’re feeling more breathless and tired. I hope the Ofev continues to help!
Happy holidays!
Charlene.-
Hi Charlene. It’s lovely to hear from you again. I’m still in England, but booked to go to NZ for 2 months on 10 January. We went last January and had a wonderful time. It’s so nice to leave our winter behind to enjoy beautiful Summer temperatures and to see our son, his wife and two young granddaughters.
I’m a bit apprehensive about oxygen levels on the 2 x 12hr flights. My pulmonologist is arranging a “fitness to fly” test. I was OK last time, but if necessary, I’ll just have to pay the airline for in flight O2.
Thanks for all your work and encouragement. I hope you are at least stable. Best wishes – David
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Hi David,
So nice to hear from you as well and glad you’re still looking to head to NZ in January. Sounds just lovely and spending that time with your son, his wife and grand daughters is just so important. Enjoy and send some of the beautiful weather back to us here in the North 🙂
I’m glad they’re conducting the fit to fly test, this is important ahead of such a long journey. Let me know how it goes and whether you choose to use in-flight oxygen or a concentrator, though the battery usage for that duration of a flight (they require 150% worth of battery power) would be huge so maybe a POC isn’t an option.
Take care and enjoy your trip!
Charlene.
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I have an autoimmune-related pulmonary fibrosis (dermatomyositis) and am currently on Cellcept and Prednisone. I saw my pulmonologist yesterday and he said he thinks within the next six months Ofev will be approved for ALL forms of PF that are progressing. He thinks I should add the Ofev when it’s available to me. I was on Ofev for five weeks before they changed my diagnosis to autoimmune and I didn’t suffer terrible side effects. I did lose my appetite and my taste buds seemed off, which I didn’t like, but I think I’ll go back on it as soon as I can.
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I have been taking Ofev since January of 2016. It has been working extremely well. The side affects are handled by taking Imodium. I take 2-150 mg pills and 3 Imodium, 2 in the morning and one at night. I also make sure to eat something with the medicine. I am not very active as I just cannot breathe when doing almost anything. Ofev is definitely a lifesaver.
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