November 25, 2019 at 9:44 am #22065Pulmonary Fibrosis News ModeratorParticipant
Senior Director of Multichannel Content for Pulmonary Fibrosis News, Michael Morale, discusses a phase 3 trial that shows how Ofev reduces lung function decline in patients with fibrotic lung diseases.
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What do you think about this news? Listen to this flash briefing episode and share your thoughts in the comment section below!
November 26, 2019 at 1:13 pm #22079ARMY PETEParticipant
hello, my name is pete.i was on ofev for about 9 weeks and finaly gave up .I was definatly in that 66% .i.e. living in the bathroom.ive been told by many that espriet is not much different .what is lacking in all the studies and trials is the out come with the meds.no one seems to be able to put it intp lay mans terms.I.e. if I die in 4 years, how many more month will the medication actually give me .for instance , several members of my family died of cancer .their radiation and or chemo treatmnents only gave them a few mor month and the cap their endured was not worth it for them of the family.I have come to believe that any study done by the makers of ofev or espriet is biased .at $100000 a year per patient I can certainly understand that .its math and profit.its sad that so many people are giving false hopes with all the possible meds and remedies.you guys have been unable to make a cure or give us a product that doesn’t make you feel like crap while taking it.yes there are exeptions but most of us need meds to counter the effects of the drug itself.i think that quality of life is more important then quantity.the regular effects of I p f are bad enough with out more problems from the meds you give us.boehringer Ingelheim is making a mint…..
pete [email protected]
November 26, 2019 at 4:47 pm #22080JillTParticipant
I totally get your reasoning, Pete. That’s exactly how I felt too when I was offered the drugs. They don’t seem to actually improve quality of life, just slow progression. My fear on hearing this was that the end stages of the disease would also be slowed down, drawn out and possibly more difficult as a result. I’m not interested in adding more suffering to an already very unpleasant prognosis. Then when they said up to 3 other drugs might be required to control the side effects of the antifibrotics, it was a hard pass from me. I’ve suffered with IBS and other GI issues over many years already, so why would I want to take a drug likely to make things worse in that regard? Completely agree re quality vs quantity of life – health span, not life span.
- This reply was modified 2 years, 8 months ago by JillT.
November 29, 2019 at 8:31 am #22129
Really well said Jill! I agree with you both and only can hope that one day (soon, like yesterday…) a drug will be developed that helps us with no unpleasant side effects. We still have to live our lives with this disease too!
Thanks for sharing your perspective.
November 29, 2019 at 8:30 am #22128
Nice to hear from you again – thanks for writing! I remember you had a really tough time with the OFEV, and lots of unpleasant side effects. I sure wish a drug could be developed that is just as effective as the two anti-fibrotics but with a lot fewer side effects. I haven’t tried Esbriet so I can’t share my experience with that. Did you try reducing the dose of Ofev from the standard 150mg to 100 mg? That does seem to help a lot of people but how the drug affects each person is unique, thus, researchers and physicians are unable to predict or generalize lifespan and how the drugs will help. One thing I learnt at the PFF Summit is that this disease is so very complex. I do wish for the same as you though, sure would be nice.
Hang in there!
December 17, 2019 at 10:47 am #22264Lauree KellyParticipant
I felt better after taking Ofev but my liver functions were through the rough. Esbriet made me have many GI issues. I wish I could have continued on Ofev.
December 17, 2019 at 8:03 pm #22285
Thanks so much for writing and sharing your experience with us re: Ofev and Esbriet. So sorry to hear the liver enzymes were really high on Ofev. Was there anything they could do to counter that side effect? I would imagine if so they would have kept you on the drug if you felt better on it. Such a shame it can cause such debilitating issues. Hopefully the GI issues subside with Esbriet. Feel free to reach out to this forum if they don’t, I know some folks have figured out ways to help with the GI side effects — even if takes slowly building up the tolerance for the 3 pills per day. Hang in there and feel free to write anytime!
December 20, 2019 at 12:00 am #22304Marilyn MottParticipant
I was finally approved for OFEV, but I had an exacerbation while in the hospital for possible pneumonia and was read the DNR questions. After a week longer in ICU, I was sent home on hospice with oxygen levels of 7 and 13 liters. Then my package of OFEV arrived with an enclosed package of diarrhea medicine. At that point, I decided to not take the medication.
After weeks of bed rest, oxygen masks, and meds, I have begun to improve. I then had a very severe case of shingles, which called for gabapentin for the nerve pain. Wonderful side effect was it really helped with my cough.
Physical therapy helped to restore the flabby muscles and now I can walk trailing my oxygen tubing from my bed to the bathroom and kitchen where I have done light cooking.
I came home on hospice April 2, 2019, and now 9 months later, I am better than when I came home. If I make it to the end of December, I will have my 80th birthday.
I have been the caregiver for my husband for the last six years for his short term Alzheimer’s. Four weeks ago he was diagnosed with a kidney stone and sent home to pass it. During this time he had a mild heart attack and now he is no longer able to be my help. I have sitters.
Sorry for the rambling; perhaps something that I have said will encourage others with this terrible disease to keep trying to overcome obstacles one day at a time.
December 21, 2019 at 8:12 am #22309
Thank you for being so brave and sharing this vulnerable piece of your story – I have no doubt that it will help others, and encourage them to continue despite all the hardships. I’m so sorry to hear about your tough journey – pneumonia and shingles – that must have been awful. I’ve heard several people talk about how gabapentin has helped with their cough, like you say, a very unexpected but pleasant side effect. I hope you get to celebrate your 80th birthday and that you continue to improve as much as possible. Feel free to write any time, and thanks for giving others the reassurance to keeping trying and overcome those obstacles. Wishing you a wonderful holiday season!
December 29, 2019 at 11:28 am #22341Hans M. FinkParticipant
Hello Army Pete,
Being negative about the IPF condition will most certainly shorten your live.
Despite the side effects of the medications, slowing down the progression of IPF is worth in terms of longevity.
Besides, the side effects can be controlled & be minimized. There are a lot of great suggestions we can get & use from this user forum.
Bottom line, is to be positive at all times.
Happy New Year to All.
December 30, 2019 at 4:07 am #22343JillTParticipant
Apologies in advance if I’m a bit prickly on this subject, but seems to me you’re using “positive” and “negative” in a pretty judgmental manner here. One man’s “negative” can be another’s “realistic”, while “positive” to one person can mean “denial” from someone else’s POV. There’s no ‘one size fits all’ approach to any illness and we shouldn’t try to tell others how to deal with their diagnosis. Depending on their life experience/stage and comorbidities, they will see things through their own lens. We’re all dealing with this the best way we know how. JMO.
December 30, 2019 at 10:08 am #22344ARMY PETEParticipant
Amen , Jillt
December 31, 2019 at 12:36 pm #22354MargaretParticipant
Happy New Year’s to all and thank you for all your sharing! I have to respond to this Ofev discussion … I share the responses of all the participants! I was diagnosed with IPF in Jan.2015 … was on Ofev for almost two years…the 150 mg messed with my liver enzymes but the 100 was o.k. that way. I felt like I was sacrificing quality of life – just didn’t feel good so I stopped. Dr. convinced me to try Esbriet which I was on for about 6 months but those side effects were even worse! I was off both for almost a year. However, THIS FORUM made me re-think not taking either of these. I know my symptoms are worsening … needing more and more oxygen for the simplest tasks. My numbers are declining … Reports of peoples numbers improving gave me hope so I’m now back on Ofev – 100!!
However, I do agree that quality of life is very important!! And I will not stay on it if the negative effects return.
Thank you all for sharing your journey … blessings of good health and peace in 2020!
December 31, 2019 at 2:54 pm #22358Jacki BaumParticipant
I was diagnosed with IPF in May, 2017 and began taking OFEV in February of 2018, 150 twice a day. Took it for almost a year, but my dosage was reduced to 100 because of the side effects. Now my side effects are minimal and I can deal with them. My PFTs are normal, and I am not on oxygen. I try to walk 2 miles 4 times a week and I still play golf 2-3 times a week. I cannot go up steep hills without getting out of breath, so I know I am not as strong as I used to be, but I keep pushing myself. My Dr said it will not hurt my lungs to push, but if my chest does hurt to too much I stop when it gets too much. I believe OFEV has been working for me. I do have side effects I do not like, loss of hair, loss of appetite and lost weight, but I am grateful for what I have. We are all on this journey together and all in different stages.
I wish y’all Peace and Blessings in the New Year!
December 31, 2019 at 3:42 pm #22365
Thanks so much for sharing your experience with Ofev, and Happy New Year to you as well! I’ve heard from a lot of people that the side effects of both anti-fibrotic drugs really compromise their quality of life, which is so unfortunate. I am on Ofev and have managed the GI effects okay, thankfully, but I certainly wouldn’t blame someone for opting to stay off of them. I’m really glad the forum offered you some comfort, how is the 100 mg dose going? Please connect if the side effects return, I’ve discovered some helpful ways to manage them — of course, they may not work for everyone but worth a try!
Hang in there and all the very best in 2020! Thanks for being part of our special community 🙂
December 31, 2019 at 3:45 pm #22366
Thanks so much for writing and sharing your experience with Ofev. Reducing the dose seems to be the ‘magical’ fix for some people, especially when it comes to tolerating side effects which is great. So glad you can still do the things you enjoy, even if it involves pushing yourself a bit. Wishing you nothing but the best in the new year, and thanks for being part of this wonderful online community.
January 4, 2020 at 9:56 am #22403Hans M. FinkParticipant
Happy New Year.
You said it better than I could about taking OFEV & living with the side effects.
In ALL situations I tend to look at life as the “Glass Half Full”. I find it amazing that having a positive attitude makes life a much more joyful journey. Even while dealing with the IPF issues we seem to have in common.
I wish all the best to all the participant on this forum.
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