Do you take OFEV? Take our poll!

[Robert Ross]

yes

[Charlene Marshall]

Thanks for your reply Robert!

[David Swain]

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.

[Cynthia]

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

[Charlene Marshall]

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.

[David Swain]

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

[Charlene Marshall]

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.

[Cynthia]

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.

[Mark Koziol]

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

[Hans M. Fink]

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

[Charlene Marshall]

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

[Chris Woolsey]

Yes.

Thanks,

Chris Woolsey

[Charlene Marshall]

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

[Chuck Harrison]

Yes , started out at 300 , now 200

[Mark Koziol]

Hello Chuck and Joan, thank you for sharing. Mark

[Joan E. Lynch]

No

[Gerry Raker]

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

[Judy]

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

[Lee Ann Robertson]

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

[Mark Koziol]

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

[Mark Koziol]

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

[Mark Koziol]

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.

[George A Rydberg]

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.

[Charlene Marshall]

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.

[Dennis Skahen]

Yes Started in Oct. 2021

[Duncan Fowler]

Yes, 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.

[John]

Just 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

[Mark Lunt]

I 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.

[Terrance Krouth]

Yes

[John]

I think it would be helpful. to post the poll. I took it, but can’t recall now what the questions were!

John

[Jim]

Yes, I have been on OFEV almost 5 years.

150 mg twice a day