Tagged: chronic illness, Esbriet, IPF, lung disease, OFEV, side effects
- This topic has 85 replies, 47 voices, and was last updated 10 months, 3 weeks ago by
Dennis Broetzman.
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AuthorPosts
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May 8, 2018 at 2:17 pm #12380
Anonymous
Inactive -
May 11, 2018 at 9:15 am #12451
Carl Stecker
ParticipantYes
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May 12, 2018 at 7:25 am #12464
Charlene Marshall
KeymasterThanks for taking our poll Carl!
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This reply was modified 4 years, 8 months ago by
Charlene Marshall.
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This reply was modified 4 years, 8 months ago by
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May 12, 2018 at 7:53 pm #12477
Ken Room
ParticipantYes
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May 13, 2018 at 8:35 pm #12481
Charlene Marshall
KeymasterThanks for taking our poll Ken!
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May 11, 2018 at 9:45 am #12453
Thomas Cole
ParticipantYes
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May 12, 2018 at 7:26 am #12466
Charlene Marshall
KeymasterThanks for taking our poll Thomas!
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May 11, 2018 at 12:00 pm #12454
Nanzy Stewart
ParticipantYes
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May 12, 2018 at 7:26 am #12467
Charlene Marshall
KeymasterThanks for taking our poll Nanzy!
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May 11, 2018 at 6:43 pm #12457
Bob
ParticipantYes
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May 12, 2018 at 7:27 am #12468
Charlene Marshall
KeymasterThanks for taking our poll Bob!
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May 15, 2018 at 1:53 pm #12512
Ron Morris
ParticipantYes
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May 15, 2018 at 6:45 pm #12520
Charlene Marshall
KeymasterThanks for taking our poll Ron!
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May 15, 2018 at 3:22 pm #12514
George A Rydberg
ParticipantYes-over 2 years
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May 15, 2018 at 6:46 pm #12521
Charlene Marshall
KeymasterThanks for taking our toll George!
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May 30, 2018 at 1:20 am #12822
Roger Coles
ParticipantYes
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May 30, 2018 at 10:24 am #12830
Charlene Marshall
KeymasterThanks for taking our poll Roger!
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May 31, 2018 at 2:08 pm #12846
William Kracke
ParticipantNo – Esbriet
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June 2, 2018 at 2:16 pm #12874
Sydney Christian
ParticipantYes
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June 2, 2018 at 7:53 pm #12877
Charlene Marshall
KeymasterThanks for taking our poll Sydney!
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June 2, 2018 at 6:10 pm #12876
Nola Turner
ParticipantYes
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June 2, 2018 at 7:54 pm #12878
Charlene Marshall
KeymasterThanks for taking our poll Nola!
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July 15, 2018 at 1:00 am #13486
Chuck Harrison
ParticipantYes , 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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July 15, 2018 at 6:13 pm #13487
Charlene Marshall
KeymasterHi Chuck,
Thank you for taking our poll on OFEV! Your responses are greatly appreciated 🙂
Charlene.
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July 17, 2018 at 8:29 am #13500
James Pillows
ParticipantI 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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July 17, 2018 at 12:08 pm #13513
Charlene Marshall
KeymasterHi 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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July 17, 2018 at 10:27 am #13502
Michael Lamkin
ParticipantNo 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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July 17, 2018 at 12:07 pm #13512
Charlene Marshall
KeymasterHi 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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July 17, 2018 at 11:48 am #13508
Steve Dinger
ParticipantYes. Two years now. Big help.
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July 17, 2018 at 12:05 pm #13511
Charlene Marshall
KeymasterThanks for taking our poll Steve, I am so glad to hear it has been helping you!
Charlene.
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July 17, 2018 at 12:39 pm #13515
Bill
ParticipantYes.. 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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July 19, 2018 at 1:38 pm #13552
Charlene Marshall
KeymasterHi Bill,
Thanks so much for taking our survey and for sharing your experience with your disease and OFEV. Will keep my fingers crossed that your progression remains very minor! 🙂
Charlene.
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July 20, 2018 at 8:06 am #13560
Jim Dunstone
ParticipantYes
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July 20, 2018 at 8:12 am #13562
Charlene Marshall
KeymasterThanks for taking our poll on OFEV, Jim!
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October 26, 2018 at 2:56 pm #15025
perry mcgee
Participantyes. 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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October 29, 2018 at 8:53 am #15052
Charlene Marshall
KeymasterHi 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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October 30, 2018 at 8:43 am #15090
Cathi Newcomb
ParticipantMy husband has been on OFEV for about a year and a half. The progression has ceased since.
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November 1, 2018 at 7:31 am #15125
Charlene Marshall
KeymasterHi Cathi,
That is really great news to hear about your husband re: the progression of his IPF has ceased. Does he tolerate it well in terms of side effects, or did he when he first started it? I’m happy with this medication as well and thankful it exists!
Take care,
Charlene.
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October 30, 2018 at 9:32 am #15092
Robert Morrison
ParticipantI 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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November 1, 2018 at 7:34 am #15126
Charlene Marshall
KeymasterHi 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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October 30, 2018 at 9:53 am #15094
Brian Thomson
ParticipantWill begin this Thursday hoping for the best.
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November 1, 2018 at 7:34 am #15127
Charlene Marshall
KeymasterWill be thinking of you Brian, I hope all goes well!
Fingers crossed,
Charlene.
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November 2, 2018 at 10:31 am #15155
Robert Morrison
ParticipantHi 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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November 2, 2018 at 12:52 pm #15165
Charlene Marshall
KeymasterHi 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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November 3, 2018 at 3:05 am #15169
Robert Ross
Participantyes
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November 4, 2018 at 9:00 pm #15171
Charlene Marshall
KeymasterThank you for taking our poll Robert. We really appreciate it!
Charlene.
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November 26, 2019 at 11:50 am #22078
Rod Danner
ParticipantI 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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November 27, 2019 at 9:31 am #22091
Charlene Marshall
KeymasterHi 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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November 26, 2019 at 4:51 pm #22082
Robert Ross
Participantyes
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November 27, 2019 at 9:31 am #22092
Charlene Marshall
KeymasterThanks for your reply Robert!
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November 27, 2019 at 9:31 am #22072
David Swain
ParticipantI’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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November 27, 2019 at 9:34 am #22094
Charlene Marshall
KeymasterHi 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.-
November 28, 2019 at 5:41 pm #22125
David Swain
ParticipantHi 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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November 29, 2019 at 9:01 am #22136
Charlene Marshall
KeymasterHi 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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November 28, 2019 at 9:34 am #22106
Cynthia
ParticipantI 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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November 28, 2019 at 10:24 am #22116
Mark Koziol
ParticipantHello Cynthia, thank you for sharing. It is good your body accepts the Ofev without gastric distress. I think the taste buds will come back. Happy Thanksgiving to you and your family. Mark
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November 28, 2019 at 3:58 pm #22124
Hans M. Fink
ParticipantYes, I am taking OFEV 150mg twice a day. I also supplement with chinise hebs from Wei Labs. to help manage the side effects caused by the OFEV medication.
Hans
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November 29, 2019 at 8:49 am #22131
Charlene Marshall
KeymasterThanks for sharing your experience with us Hans!
Best wishes.
Charlene. -
December 2, 2019 at 1:43 pm #22143
Chris Woolsey
ParticipantYes.
Thanks,
Chris Woolsey
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December 4, 2019 at 6:55 pm #22164
Charlene Marshall
KeymasterThanks for contributing to our poll Chris!
Warmly,
Charlene.
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December 3, 2019 at 2:41 pm #22149
Chuck Harrison
ParticipantYes , started out at 300 , now 200
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December 3, 2019 at 4:23 pm #22155
Mark Koziol
ParticipantHello Chuck and Joan, thank you for sharing. Mark
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December 3, 2019 at 3:27 pm #22153
Joan E. Lynch
ParticipantNo
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January 22, 2020 at 7:17 pm #22632
Gerry Raker
ParticipantHello,
I have been taking Ofev 150 mg twice daily for about 6 weeks. I have not had any serious side effects so far. My first blood draw was normal. I started out with Esbriet for three months or so but had problems with fatigue and skin reaction so I quit for a while and then switched.
Gerry
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January 23, 2020 at 10:21 am #22638
Judy
ParticipantJust started ofev this week. Some slight nausea so far. To soon to give much feedback.
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January 23, 2020 at 11:00 am #22636
Lee Ann Robertson
ParticipantI just started last Saturday, January 18th. So far, I’m handling it well!
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January 23, 2020 at 11:07 am #22643
Mark Koziol
ParticipantHello Gerry , that is good you are now tolerating the Ofev. Thank you for sharing. mark
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January 23, 2020 at 11:08 am #22644
Mark Koziol
ParticipantThank you Judy. Lets hope you will continue to tolerate the Ofev with minimal problems. Mark
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January 23, 2020 at 11:11 am #22645
Mark Koziol
ParticipantHello Lee Ann, thanks for sharing. The possibility of you continuing to tolerate the medicine is high. Most people have problems immediately. Take care, Mark.
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January 23, 2020 at 3:50 pm #22654
George A Rydberg
ParticipantI 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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January 23, 2020 at 6:50 pm #22661
Charlene Marshall
KeymasterHi George,
Thanks so much for writing to us and sharing your experience with Ofev. I am really glad its been working for you and the side effects are manageable. I’ve been lucky with this drug too. Really glad its helping 🙂
Charlene. -
February 12, 2022 at 2:05 pm #31039
Dennis Skahen
ParticipantYes Started in Oct. 2021
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February 12, 2022 at 4:05 pm #31040
Duncan Fowler
ParticipantYes, Probably since 11/17 I have been on 150’s twice a day since then. I have had bouts of diarrhea but I kind of toughed it out as I have been fairly stable with my IPF. A couple of months ago my doc suggested that I switch to 100’s twice a day. I was reluctant but tired of the bouts of diarrhea. I suggested that I switch to 150’s in the morning and 100’s at night. She agreed and it has really been working well for me.
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February 15, 2022 at 4:36 pm #31061
John
ParticipantJust completed the survey as I complete my first month on OFEV (150 mg twice a day). Grateful for no side effects to date, as well as a negative blood test for liver issues. I was originally diagnosed 12/19 during a 5 week hospitalization for PF and lung embolism. My treating pulmonologist said she could see the IPF on an X-ray a couple of years earlier. I’m approaching age 81 and hoping OFEV and my so far slow progression will enable me to die from something other than IPF.
Best to all!
John
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February 17, 2022 at 9:43 am #31073
Mark Lunt
ParticipantI was prescribed Ofev and have been taking the 150mg dose since early November 2021. All started well with no adverse bowel effects. Early days even no nausea. Things changed after about 8 weeks and I started feeling nauseous. I tried to counteract this feeling by taking my breakfast a lot later (approx 10.30am.) so that when I took the evening dose (10.30pm)I hoped I may get to sleep before the nausea started. This was moderately successful however it eventually changed and even if I got to sleep the nausea would wake me. I was also violently sick a few times. After contacting my consultant I was offered the lower 100mg dose which I am on now and seem to be tolerating.
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February 18, 2022 at 12:11 pm #31094
Terrance Krouth
ParticipantYes
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February 22, 2022 at 4:21 pm #31132
John
ParticipantI think it would be helpful. to post the poll. I took it, but can’t recall now what the questions were!
John
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February 22, 2022 at 6:54 pm #31134
Jim
ParticipantYes, I have been on OFEV almost 5 years.
150 mg twice a day
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February 26, 2022 at 1:12 pm #31197
Paul B ~ Lakeland
ParticipantWill those of us who participated in the poll, get to see cumulative results??
Paul ~ Lakeland -
March 6, 2022 at 11:44 am #31249
Joan Thorkelson
ParticipantYes
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March 8, 2022 at 10:12 am #31252
Walter
Participant2 x daily Ofev 150 mg
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March 9, 2022 at 12:36 am #31290
Thomas Johnson
ParticipantNo – Esbriet
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March 10, 2022 at 2:33 pm #31302
denise anton
ParticipantYes
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March 10, 2022 at 2:35 pm #31303
Dennis Broetzman
ParticipantYES
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AuthorPosts
- The topic ‘Do you take OFEV? Take our poll!’ is closed to new replies.