Taking ofev a year!

[Bill Mattila]

After a year of OFEV It has slowed the progress of the fiberosis a lot. It now costs 109 thousand a year. 9100.00 a month.

Thank GOD that my insurance co pay is only 42$ a month.

[Charlene Marshall]

Hi Bill,

Thanks so much for getting in touch with us for this topic, I’m so glad to hear OFEV has been slowing down the progression of your fibrosis. It has worked well for me as well. Do you find the management of side effects from it manageable? So far I am tolerating it pretty well and am so thankful for our Canadian drug coverage. I’m glad your co-pay allows it to be affordable for you too. Thank goodness! I couldn’t imagine figuring out how to afford that …

Take good care,
Charlene.

[Bill Mattila]

Do not take Ofev with stool softeners. HA HA.

[Charlene Marshall]

Hi Bill,

I had a good chuckle with this, but I hope it isn’t on account of something you experience. I agree, it’s important not to take these two things together. Was a mess that could be – literally and figuratively! Thanks for always giving me a chuckle.

Cheers,
Charlene.

[Stanley scohen]

Please advise if you have any recipe suggestions for controlling diarrhea resulting from Ofev.

[Mark Koziol]

Hello Stanley, I can tell you what I did to combat the potential for gastric distress. I tried to eat a banana when I took my OFEV in the morning. I also tried to eat a protein as well. I kept my meals small and ate 5-6 times a day. This worked for me but about once a month I did experience some problems. Thanks Mark

[Keith Nelson]

Thank you for your insight on ofev, Bill.

Since ofev was approved on the same date as esbriet, back in 2014 are you aware of any studies that reveal the effectiveness of either of these drugs?

I have been prescribed ofev. I am not taking it. Rather, I am seeking a second opinion on my IPF and the prognosis from our nearby Oregon Health & Science University. I suspect ofev and I are just moments away from establishing an intimate relationship!

My 89 year old Aunt has been on ofev about a year, experiences all the identified symptoms of taking it – it has not been pleasant for her. She is on O2 100% of the time. Seems to get around about as expected, considering!

I have both a maternal grandfather, and an Aunt (the elder sister of the above mentioned 89 year-old Aunt) who have passed as a result of IPF.

I am the lucky one in my generation of the family, to have been awarded the pleasure of dealing with this affliction. None of my siblings, nor cousins from this side of the family have yet joined me on this path.

Keith

[Mark Koziol]

Hello Keith, I have my fingers crossed for you. As you know this disease is nasty and vile. I have pasted a study completed by Boehringer Ingelheim, the maker of OFEV.

https://www.boehringer-ingelheim.us/press-release/new-study-results-provide-evidence-ofev-nintedanib-slows-progression-ipf-beyond-four

The following link details the effects of Esbriet.

https://www.ema.europa.eu/en/medicines/human/EPAR/esbriet

Thank you Keith, I hope this helps.

[ARMY PETE]

Being somewhat of a cynic,I see that the good germans ,and I am one , raked in over 20 billion dolars sinse 2017.Much of there studys are trials and the results are measured by the amounts of air you can exhale /inhale.I do that test every few month.It  does not show ay “real life” qualiy of life changes .At least in my case , living with ofev is worth then living with out it.For now I take my chances.Of course I might change my mind as the desease progresses,but I doubt it.I had fiends and family die of cancers some went for the treatments ,some did not .They all left us within a few month of one another …. Maybe I am the devils advocate.Sorry

[Charlene Marshall]

Hi Pete,

Not necessarily a devil’s advocate, I’d say more of an advocate for your preferred way of managing IPF. Some people don’t find the terrible side effects that can come from Ofev worth it for the time they have left, while others do. It all is personal preference I suppose and dependent on how people tolerate the medications 🙂
Charlene.

[ARMY PETE]

You are very kind.thank you.I am on prozac , trazedone and blood pressure drugs and a few more for what ailes me .The ofev just buriied me .lol

[Charlene Marshall]

I’m sorry to hear that Pete, it certainly can be a difficult drug on our bodies!

Have you tried lowering the dose to see if you tolerate it a bit better? I know some folks have gone from 150mg twice daily to 100 mg twice and that seems to help them. It doesn’t help everyone of course, but wasn’t sure if this would be an option for you …

 

Charlene.

[Malcolm Mann]

Hi Pete Charlene

I’ve had a couple of really tough weeks on Ofev, yesterday I rang the lung clinic, they suggested I have 2 week holiday from ofev, to allow my digestive system to return to some semblance of good order. After the break they say to re start on one 150mg tablet a day and see how that dose is tolerated. Then depending on the results either go on to 100 or 150 twice a day. I’m also getting them another blood test.

The idea of the holiday is very welcome.

Cheers

Mal

[Charlene Marshall]

Hi Mal,

Nice to hear from you, thanks for writing … although, I wish it was with better news! So sorry to hear you’re having a tough time with the Ofev. I’ve heard lots of physicians encouraging a 2 week break/holiday from Ofev to alleviate symptoms and then to slowly start it again, building up their tolerance. It is a tough medication to be on, no doubt about that. Please keep us posted on how the break from it goes, and I hope you can restart it and tolerate it. I know of another forum member who did this, and is now tolerating the re-introduction of the drug quite well. I’ll be thinking of you Mal!

Take care,
Charlene.

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