Do you take OFEV? Take our poll!

[Carl Stecker]

Yes

[Charlene Marshall]

Thanks for taking our poll Carl!

[Ken Room]

Yes

[Charlene Marshall]

Thanks for taking our poll Ken!

[Thomas Cole]

Yes

[Charlene Marshall]

Thanks for taking our poll Thomas!

[Nanzy Stewart]

Yes

[Charlene Marshall]

Thanks for taking our poll Nanzy!

[Bob]

Yes

[Charlene Marshall]

Thanks for taking our poll Bob!

[Ron Morris]

Yes

[Charlene Marshall]

Thanks for taking our poll Ron!

[George A Rydberg]

Yes-over 2 years

[Charlene Marshall]

Thanks for taking our toll George!

[Roger Coles]

Yes

[Charlene Marshall]

Thanks for taking our poll Roger!

[William Kracke]

No – Esbriet

[Sydney Christian]

Yes

 

[Charlene Marshall]

Thanks for taking our poll Sydney!

[Lawrence]

Yes

[Nola Turner]

Yes

[Charlene Marshall]

Thanks for taking our poll Nola!

[Chuck Harrison]

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

[Charlene Marshall]

Hi Chuck,

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

Charlene.

[James Pillows]

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.

[Charlene Marshall]

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.

[Michael Lamkin]

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.

[Charlene Marshall]

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.

[Steve Dinger]

Yes. Two years now. Big help.

[Charlene Marshall]

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

Charlene.

[Bill]

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

[Charlene Marshall]

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.

[Jim Dunstone]

Yes

[Charlene Marshall]

Thanks for taking our poll on OFEV, Jim!

[perry mcgee]

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

[Charlene Marshall]

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.

[Cathi Newcomb]

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

[Charlene Marshall]

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.

[Robert Morrison]

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

[Charlene Marshall]

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.

[Brian Thomson]

Will begin this Thursday hoping for the best.

[Charlene Marshall]

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

[Robert Morrison]

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

[Charlene Marshall]

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.

[Robert Ross]

yes

[Charlene Marshall]

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

[Rod Danner]

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.

[Charlene Marshall]

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.