Viewing 41 reply threads
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    Posts
    • #12380
      Michael Nace
      Keymaster

    • #12451
      Carl Stecker
      Participant

      Yes

    • #12453
      Thomas Cole
      Participant

      Yes

    • #12454
      Nanzy Stewart
      Participant

      Yes

    • #12457
      Bob
      Participant

      Yes

    • #12512
      Ron Morris
      Participant

      Yes

    • #12514
      George A Rydberg
      Participant

      Yes-over 2 years

    • #12822
      Roger Coles
      Participant

      Yes

    • #12846
      William Kracke
      Participant

      No – Esbriet

    • #12874
      Sydney Christian
      Participant

      Yes

       

    • #12876
      Nola Turner
      Participant

      Yes

    • #13486
      Chuck Harrison
      Participant

      Yes , I take ofev . Started at 150 twice daily , it was very harsh on my bowels , now I take 100 twice daily

      • #13487

        Hi Chuck,

        Thank you for taking our poll on OFEV! Your responses are greatly appreciated 🙂

        Charlene.

    • #13500
      James Pillows
      Participant

      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.

      • #13513

        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.

    • #13502
      Michael Lamkin
      Participant

      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.

      • #13512

        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.

    • #13508
      Steve Dinger
      Participant

      Yes. Two years now. Big help.

      • #13511

        Thanks for taking our poll Steve, I am so glad to hear it has been helping you!

        Charlene.

    • #13515
      Bill
      Participant

      Yes.. since January 2017.   So far, progression seems to be very minor.  No idea if it has anything to do with OFEV though…

      • #13552

        Hi 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.

    • #13560
      Jim Dunstone
      Participant

      Yes

    • #15025
      perry mcgee
      Participant

      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

      • #15052

        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.

    • #15090
      Cathi Newcomb
      Participant

      My husband has been on OFEV for about a year and a half. The progression has ceased since.

      • #15125

        Hi 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.

    • #15092
      Robert Morrison
      Participant

      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

      • #15126

        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.

    • #15094
      Brian Thomson
      Participant

      Will begin this Thursday hoping for the best.

      • #15127

        Will be thinking of you Brian, I hope all goes well!
        Fingers crossed,
        Charlene.

    • #15155
      Robert Morrison
      Participant

      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

    • #15165

      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.

    • #15169
      Robert Ross
      Participant

      yes

      • #15171

        Thank you for taking our poll Robert. We really appreciate it!
        Charlene.

    • #22078
      Rod Danner
      Participant

      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.

      • #22091

        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.

    • #22082
      Robert Ross
      Participant

      yes

    • #22072
      David Swain
      Participant

      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.

      • #22109
        Cynthia
        Participant

        I think it takes at least two months for Ofev to start working.

    • #22094

      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.

      • #22125
        David Swain
        Participant

        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

        • #22136

          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.

    • #22106
      Cynthia
      Participant

      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.

      • #22116
        Mark Koziol
        Keymaster

        Hello 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

    • #22124
      Hans M. Fink
      Participant

      Yes, 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

    • #22131

      Thanks for sharing your experience with us Hans!
      Best wishes.
      Charlene.

    • #22143
      Chris Woolsey
      Participant

      Yes.

      Thanks,

      Chris Woolsey

      • #22164

        Thanks for contributing to our poll Chris!
        Warmly,
        Charlene.

    • #22149
      Chuck Harrison
      Participant

      Yes , started out at 300 , now 200

      • #22155
        Mark Koziol
        Keymaster

        Hello Chuck and Joan, thank you for sharing. Mark

    • #22153
      Joan E. Lynch
      Participant

      No

    • #22632
      Gerry Raker
      Participant

      Hello,

      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

    • #22638
      Judy
      Participant

      Just started ofev this week. Some slight nausea so far. To soon to give much feedback.

    • #22636
      Lee Ann Robertson
      Participant

      I just started last Saturday, January 18th. So far, I’m handling it well!

    • #22643
      Mark Koziol
      Keymaster

      Hello Gerry , that is good you are now tolerating the Ofev. Thank you for sharing. mark

    • #22644
      Mark Koziol
      Keymaster

      Thank you Judy. Lets hope you will continue to tolerate the Ofev with minimal problems. Mark

    • #22645
      Mark Koziol
      Keymaster

      Hello Lee Ann, thanks for sharing. The possibility of you continuing to tolerate the medicine is high. Most people have problems immediately. Take care, Mark.

    • #22654
      George A Rydberg
      Participant

      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.

    • #22661

      Hi 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.

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