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Has anyone stopped taking Esbriet?
Hi all, I have a question that I haven’t been able to find any definitive answer for.
My dad has been on Esbriet for almost 2 years now. While being on Esbriet he has progressed to oxygen therapy 24/7 – he needs about 3.5 liters of oxygen. He struggles to climb a flight of stairs; he can’t even go to the kitchen to make tea or meals for himself anymore.
He’s had constant GI issues (stomach aches, diarrhea, nausea), loss of appetite, weight loss and rashes as side effects of Esbriet. He’s tried to tolerate this as much as possible and we’ve done our best to try to mitigate some of it with over-the-counter treatments, healthy diet, etc.
But he’s had enough and wants to stop taking it.
I’m not sure if that’s the best decision but I want him to enjoy whatever time he has left rather than suffer with these side effects. There’s almost no evidence available as to what happens to patients who stop taking an anti-fibrotic. Are we making a good decision here?
So, I wanted to ask on this forum if there was anyone who has stopped taking it (or even Ofev for that matter) and how did things go?
Thanks in advance for all your replies.
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25 Replies
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Hello Vishal,
I feel very much sorry about your Dad’s condition.
I have also been on Esbriet for almost two years with similar side effects (not to mention constant headaches, fatigue and dizziness) since the beginning.
After consulting with my pulmonary MD I reduced the daily dosage by 1/3, i.e. I take 2x 800mg brown pills instead of 3; and sometimes (when headaches or upset stomach are intolerable) only one. It has reduced side effects by a significant proportion (about 80%). No need for supplement O2.
It remains to be seen in my next full lung check up what is the cost of the experiment…
All the best to you and your father,
God Bless.
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Hi Michael,
Thanks so much for the reply. It’s amazing that reducing the dose by 1 pill decreased the side effects so greatly – I’m happy to hear that it helped you so much. I think that’s the route we’ll go as well – I’m going to speak with our Pulmonary MD this week as well and see if we can reduce the dose. I’m just not comfortable stopping it completely because I think it probably is doing some good.
I’m also going to start giving my dad some strong prebiotic + probiotic formulation every morning. I’ve heard some good things about probiotic formulations – they’re often used by patients with inflammatory bowel syndrome and related conditions. And we’ll try the Oregano tip too – I’ve never heard that before!
If we can just get the GI issues under control, I think he’d start feeling much better.
I wish you all the best and hope your next lung check up goes as well as can be. Stay positive!
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I started on Esbriet and could NOT tolerate it so switch to OFEV and am having no problems I take a probiotic with it 150 mg 2X a day
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Thank you for sharing Nancy. I am pleased you have found the right medicine. Some are never given the option to change, even though the option is there for everyone. Mark
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I couldn’t take Esbriet. It made me so sick so Dr changed me to OFEV and have been on for almost 3 months No problems. I do take a probiotic and eat activa yogurt
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Hello Vishal,
I feel very much sorry about your Dad’s condition.
I have also been on Esbriet for almost two years with similar side effects (not to mention constant headaches, fatigue and dizziness) since the beginning.
After consulting with my pulmonary MD I reduced the daily dosage by 1/3, i.e. I take 2 800mg brown pills instead of 3; and sometimes (when headaches or upset stomach are intolerable) only one. It has reduced side effects by a significant proportion (about 80%).
It remains to be seen in my next full lung check up what is the cost of the experiment…
All the best to you and your father,
God Bless.
P,S. you can fight diarrhea with Oregano oil or tea (it’s very bitter but it works) or just use plenty plain dry Oregano on salads, meat, fish, or what have you…
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I have stopped taking Esbriet. I was having some really unusual side effects. I started taking prednisone right around the same time I started Esbriet though, so some of the problems may be the prednisone or the combination of the two. I want to give it another go and see if there’s a repeat of the issues. I never did reach full dose. I got as far as 2 pills 3x daily but had the dose reduced again soon after.
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Hi Regina,
Thanks for the reply! It does seem like Esbriet has stronger side effects in some people versus others. There are people who don’t get any side effects at all.
Please post on these forums regarding your experience when you try it again. It’s strange that our doctor never even mentioned prednisone to us. I think prednisone was used more widely before antifibrotics were approved and some docs continue to use it along with an antifibrotic whereas others have stopped using it completely. Not sure what the data says about using them in combination, but you could be right that using both together exacerbated the side effects.
Goodluck with trying it again – I hope it works better for you this time.
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I switched from Ofec to Esbriet well over a year ago because of the side effects. I’m sure I have some side effects from Esbriet but it’s hard to tell as I have been on IPF meds for a couple of years. The gastro symptoms did improve. If you look at the research on these two drugs you will find that compared to the control group they both slowed progression of the IPF in some/many of the participants. The problem as an individual is that you don’t know if the meds are working as you don’t know what the progression would be without them. I think I would take my chances and stop taking the meds if reducing dosage with doctor’s supervision didn’t reduce significant side effects. FYI I don’t use O2 unless I’m doing something physical for more than a minute or two.
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Hi Doug, it’s great to hear that you found Esbriet to be more tolerable. And you’re right, we can’t really know how much it has helped – I wish there was more data available on these medications.
For now, we’ve cut his dose down to 2 tablets a day – I’ll report back in a few weeks to let everyone know how he’s doing and if the dose reduction provided significant relief or not.
If it doesn’t provide him relief, then we are going to stop taking it.
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I am one of the people who could not tolerate Esbriet or Ofer; I was on both of them, individually for over a year and was so sick that I told my doctor (MD Pulmonologist) that I would rather be dead than to continue with either medication. That said, there many patients in my support group that successfully take these medications and I encourage those who dot continue. I was ill from the very first dosage and it never really improved. No medication is 100% successful so I still endorse both Ofev and Esbriet. I have been off all medication for 18 months exercise moderately 40 to 45 minutes everyday and my numbers have remained constant. Fatigue remains a problem as does shortness of breath but I am still functioning without oxygen. I hope this helps.
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Hi Fred, thanks for sharing your experience. It’s unfortunate that both medications had such terrible reactions for you, but I’ve heard that sometimes people give it another shot and it works out better the next time.
Are you considering trying either one again in the future?
It’s so awesome that you can still exercise and go about your day-to-day life without O2. From what I’m seeing and reading about other people’s experiences, the people who have been really active before the diagnosis have a slower progression. Exercise seems to be so important. I’m trying to get my dad to do really light exercise throughout the day also, in hopes that it will help.
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I am taking OFEV 150 mg a day. Have GI problems, weak and tired. Bouts of stomach pain. In other words, I have little life. Somedays better than others. Two years ago I hiked up Machu Picchu. Oxygen levels are still in the 90’s. No coughing and can still walk. However, at 80 years old, I have to be realistic. I have asked doctor to reduce dosage to 100 mg xaday to see if that alleviates these symptoms. I am still in the mild stage and of course no one knows how long I will last without meds. I am very fortunate to live so long and so sorry for those diagnosed at a young age. I have lost both my adult children to accidents. Everyone says I am a strong woman. But this is NOT the way I want to live my life. If reducing the mg does not help. I will stop with OFEV. I may regret it as the illness gets worse. Any input?? Thanks. Jackie
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Hi Jackie, sorry to hear about your current condition. What you have been through, I would say you are a strong woman. Anyone who is inflicted with this awful disease is a strong person. I do know for some patients the reduced medication has helped with their GI issues. Hopefully, this will be the case for you. Another option would be to ask your physician about Esbriet. Gastric problems are at a minimum when taking this medication. I think it is important for you to keep a positive mental attitude. I know it’s easier said than done. I hope you can get this gastro situation resolved and get back to a so called normal lifestyle. Take care, Mark.
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I also couldn’t tolerate the side effects. Just stopped taking it cold.
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I have been taking Espiret for exactly two years without side effects, which was not the case when I took Ofev previously. However, I have seen no evidence that either drug actually slowed the progression of my IPF. I am right on schedule per the initial prognosis given me January 2017, ie a 3-5 year life expectancy.
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Gosh, I hate to be a quitter. But at my age, what is the sense of living a long miserable life? This is such a unique quandary to be in. If I was in my 40s or 50s I would do anything to live. I have barely touched the misery of IPF. Taking pills that make me feel like I have a bad case of the flu everyday seems absurd. How do you know if the pills haven’t helped? I remain stable. And angry. When I want a good day, I just don’t take the pill. I am 80 years old and have enjoyed good health. Somedays I do not have enough energy to get out of the chair. NOT from lack of oxygen, just fatigue. Just rambling, as no one can know this journey unless you’re on it. Good luck to you.
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Hi Jackie,
Thanks so much for writing and sharing your thoughts with us re: medication side effects and wanting to feel well. I completely agree with you re: the quandary to be in! The time we do have, we want it to be quality time which is tough when taking either of the two anti-fibrotic medications. I’m so thankful I finally sorted out a rhythm to manage Ofev so I can have primarily good days in terms of medication side effects. Disease related bad days are another whole story! I also get very angry somedays.
Stay safe and be well… know that we’re always here for you. It sure helps to know that a community of people truly understand what this journey is like and how hard it is. Write us anytime!
Charlene.
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I took Esbriet last year for several months. At first it was fine, but as the dosage increased, I had more and more side effects – passing out, vomiting, fatigue, nausea, headaches, rashes, loss of appetite and more. When I was at full dosage, I could no longer tolerate it. My pulmonologist kept giving me drugs to counteract the side effects. I met with my GP and we decided it was better if I stopped. Honestly, I had forgotten how good it felt to not take that drug. It has been some months now and we are going to try Ofev. I do pulmonary rehab 3 times a week, eat healthy and feel good. I am on oxygen 24/7 at 5L when active during the day (higher during exercise). Best of luck with this. Sometimes you have to make the hard decisions.
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UPDATE
We’ve cut down my dad’s Esbriet to just 2 tablets per day (one at lunch; one at dinner). We also started giving him probiotics every morning with breakfast. It’s been about 2 weeks and I’ve noticed that his complaints about GI issues have decreased significantly.
He’s not complaining as much about stomach aches, nausea or diarrhea. Although he still feels like he has to run to the toilet sometimes. It’s great to see this improvement in his GI issues.
However, his breathing has deteriotated over this time as well – but, this could also be due to the fact that the weather has gotten much colder over the last week or so (we’re in Toronto). So, I’m not sure if it’s because we reduced his Esbriet dose.
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Hi Vishal,
So glad to hear your Dad’s GI issues have subsided a bit, that’s great news. I hope it remains this way for him! I’d speak to your Dad’s Pulmonologist if you can re: the deterioration in breathing. It may be weather related, but it might be good to rule out any type of acute issue like infection, virus etc. I am not a physician and have no medical training so I am only sharing that based on personal experience. You know your Dad best!
Char.
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Vishal,
Good to hear your Dad has improved re. GI condition.
I would not think a breathing deterioration would have ensued at such short time (2 weeks) solely from a 1/3 dose reduction. Pirfenidone is a slow acting medicament – if and when it works, depending on the individual – it gradually builds up or down in the body. These periodic ups and downs in breathing are probably more due to other causes. It’s part & parcel of the whole PF “package”. It would take a full and thorough pulmonary check up/assessment compared to the previous one, to see if any changes (for better or worse) have taken place at all.
God Bless.
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Hi Michael, im wondering if you can give an update about your latest lung function tests? I’m curious to see if the medicine has helped, considering the change of doses.
Thanks and best wisheswishes-
Hi,
my latest CT (June 2021) scan showed no change from previous (Aug 2020) examination whereas the pulmonary function tests (spirometry, FVC, DLCO, etc) showed a moderate reduction in diffusing capacity for carbon monoxide (DLCO).
Note that some adverse “noise factors” should be taken into account, like the COVID lockdown with its home-bounding restrictions as impediment to my regular rehab exercise outdoors but also indoors due to a badly fractured wrist (known as Colles Fracture) from which I am still recuperating…
Hoping for a more benevolent summer,
All the Best.
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Thanks for the response and its great that after nearly a year your scan is stable! Imo the PFT can have fluctuations so they sometimes need to be taken with that in mind. When you say moderate, can you put a number on it if you dont mind sharing?
Hope your wrist is improving, these things surely do put us off of our routines and my pulmonologist mentioned how disruption to exercise can cause fluctuations in PFT
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