4 Side Effects of Ofev: A Patient’s Perspective

4 Side Effects of Ofev: A Patient’s Perspective

Following my diagnosis of idiopathic pulmonary fibrosis (IPF), I took some time to research the available information to learn about my disease. Despite discovering a lot of useful material from brochures, online sources, and support networks, I’ve found that connecting with other patients has helped me the most since my journey began three years ago.

I have been privileged to meet other patients through my local hospital’s transplant program and online groups for patients living with IPF. The Pulmonary Fibrosis News Forums is a wonderful place for patients to connect and support each other. I have learned so much from members including physicians and researchers, as well as patients and caregivers. Many discussions on the forums have brought me comfort because I know that my fellow PF patients “get it” in a way that others cannot.

One of the most popular threads discusses the side effects of two antifibrotic medications used to treat PF, Ofev (nintedanib) and Esbriet (pirfenidone). I take Ofev and have paid close attention to the threads discussing its unpleasant side effects. This is one example of how connecting with other patients has been the most helpful tool for me since my diagnosis.

I’ve been thinking about those people out in cyberspace who don’t have access to a support network to discuss important aspects of our disease, including the side effects of Ofev. So, I thought that sharing my experience with this antifibrotic medication might be helpful for anyone considering Ofev.

Connect with other people and share tips on how to manage PF in our forums!

While I initially found this medication hard to get used to, having followed my pharmacist’s suggestions, I adjusted to Ofev. I believe that it is keeping my disease as stable as possible. However, I have found the following side effects difficult to manage. As a reminder, everyone’s medical experiences are different, and these are my own personal observations. Be sure to consult your doctors about any treatment decisions you make.

  1. Gastrointestinal (GI) issues: A common side effect is digestive upset, including vomiting, diarrhea, and a lack of appetite. We need to eat well to fuel our bodies and enable them to create energy to deal with this disease. Recently, I chatted with a forum member about Imodium (loperamide). I’ve found the oral pill to be ineffective at treating my GI issues. But the sublingual pill works for me.
  2. Headaches and mental fatigue: While I’m not sure whether my headaches and mental fatigue are directly linked to Ofev or to IPF itself, I believe that these symptoms have worsened since I started taking the medication. Getting out of bed in the morning has become increasingly difficult, as have mental tasks involving detailed and repetitive work.
  3. Loss of appetite and change in taste: A recent discussion in the PF forums addressed a metallic taste associated with Ofev, and a change in the taste of various foods. I have experienced this periodically, but have been unable so far to identify which foods or tastes are most affected. Sometimes sweet foods taste strange, while at other times savory dishes have an odd flavor. Since starting Ofev, I can’t tolerate spicy foods. Can you relate?
  4. Liver problems: Before I started taking Ofev, my doctor told me about the effects the medication might have on my liver. Elevated liver enzymes is a common problem for people who are on Ofev long-term, so patients should be asking their physicians to monitor their liver function.

Have you experienced any unpleasant side effects of Ofev? If so, do you have any tips to deal with them? Please share in the comments below.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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31 comments

  1. Richard says:

    I’m 72, was diagnosed with ipf in late May of 2019. I have been taking ofev for 2 months with only 2 instances of diahhrea. ( so far) I’m taking 150mg every 12 hours. I was told that “every 12 hours” was mandatory. I guess the hardest part is having to eat on that schedue as it has to be taken with food. I’ve only had 1 visit with my pulmonologist as he’s on vacation right now but did have blood work done at the end of June. I’m hoping no news is good news. I’m not sure that the ofev is slowing the fribrocis or not but we shall see.
    PS I find you’re that you’re writings and responces in this forum heart-warming and inspiring. I feel you’re wise beyond ou’re years. Hang in there, be strong breath well and thank you for being you. 🙏🙂

    • Charlene Marshall says:

      Hi Richard,

      Thank you so much for reading my columns and getting in touch via the comments. So glad to hear that Ofev seems to be going okay for you so far, I know it is always concerning to know that the unpleasant side effects could occur at any time. I will keep my fingers crossed that you continue to tolerate the medications, especially with your regimen of eating every 12 hours (kudos to you for this!). I do hope the Ofev slows the fibrosis down for you! I also really appreciate your kind words, thank you. I tend to read others’ comments on tough days and am so thankful for how they lift me up and continue to inspire me to write about my experiences if others’ are benefitting. Thank you again – you’ve truly lifted my spirits today 🙂
      Charlene.

  2. David Lopez says:

    I too have experience the gastrointestinal issues. Some days are worst than others as far as diarrhea is concern. As for taste changes in mouth, I started experiencing this about 3 months ago. I asked my pulmonologist about other patients experiencing this, and he said yes. He referred me to see an ENT. This did not help. He wasn’t able to pinpoint the source. Personally I think it have to do with dental issues. I will find out in a month when I go for a regular checkup. The metallic taste is worse during the day. In the morning it’s not so bad. This issue really cuts down on eating, since I don’t enjoy food as I use to.

    • Charlene Marshall says:

      Hi David,

      Thanks for reading my columns and getting in touch via the comments. Sorry to hear you’ve experienced the GI issues. Have you read my post on the forums recently about the sublingual immodium being beneficial? It has worked for me and a couple other members of the forums. The key is the route it is take – sublingual (under the tongue) – vs. an oral capsule, as those didn’t work for me in reducing the GI issues at all. Hope this helps! Please let us know if you find anything out about the metallic taste being linked to dental issues. I am curious about this, as a few members have recently brought up the metallic taste and dental issues. Sorry you’re experiencing this, hang in there!
      Charlene.

  3. Martin Denny says:

    I started taking Ofev earlier this year and, although I do not have the usual gastro effects, I find that if I drink any alcohol I get terrible hangovers that can last for a few days. Previously this did not occur. I assume that the effects of Ofev on my liver function is the cause i.e. I do not metabolise my alcohol as efficiently as before.
    Does anyone else have this problem?

    • Charlene Marshall says:

      Hi Martin,

      Really good question! I think you could be right re: the effect of Ofev on your liver function leading to the hangover, but I can’t be certain of course. Typically I don’t drink as much as I did since starting Ofev, but I haven’t noticed any increase in feeling hungover when I do. I’d be curious to hear from others though if they experience this? Please share if so!
      Charlene.

  4. Lou says:

    At 74 very difficult to even respond . Ofev is a tough med. Takes 6 mo. To get acostomed to. I take
    2 others prednisone and
    Mcophenolate so weak and tired.

    • Charlene Marshall says:

      Hi Lou,

      Thanks for reading my columns and reaching out via the comments, especially knowing how weak and tired you’re feeling. This disease is so cruel! I hope you have adjusted to the Ofev okay. Hang in there.
      Charlene.

  5. Chuck says:

    Hi guys. I’ve been taking OFEV for over 4 yrs now. I started out with the usual dose of 150 mg every 12 hrs. Everything was great for the first two weeks, then the diarrhea hit. It was so severe I couldn’t leave the house. My doctor agree the reduce the dosage to 100 mg. I’ve been able to tolerate that since. Still have diarrhea about twice a week, but I can live with it. The meds kept me stable for the first three yrs, but I’ve started to lose ground now and may be put on the transplant list soon. Almost forgot, my tastes in food change frequently. I seem to cycle through my likes and dislikes regarding food. So, side effects? yeah. Horrible? not so much. Does OFEV help slow the disease? I don’t really know, but figured it couldn’t hurt. So, bottom line. Life is good. There’s lots of people with worse health issues than I have. I’m blessed. Enjoying every day one at a time. 😀

    • Charlene Marshall says:

      Chuck, my friend! It is so good to hear from you!! Thanks for sharing your experience with Ofev, including the ups and downs. A lot of people are struggling with the GI/diarrhea issues and are asking their doctor to reduce the dose. Glad you’ve been able to tolerate the 100mg better! Keep me posted on the transplant listing status, I am so hopeful that the gift of life will come for you … you deserve it! Thank you for your positive attitude as well, so important on this journey. Stay blessed!
      Charlene.

  6. Mary says:

    I take an Imodium with my Ofev in a.m. do have bouts of diarrhea and I can taste salt in my foods. However, it is slowing down the disease.

    • Charlene Marshall says:

      Hi Mary,

      Thanks for reading my columns and reaching out via the comments. Glad to hear the immodium is helping with the Ofev side effects! The oral immodium didn’t seem to work for me, but the sublingual (under the tongue) dose was amazingly effective. I’ve heard others say the same about the sublingual dose as well. If you find the regular immodium isn’t helping, maybe give that a try. Glad it is so far for you, though!
      Charlene.

  7. Richard Cooper says:

    I have been on OFEV now for about 20 months. I am 2 years in to my diagnosis of IPF. The OFEV is keeping it at bay so far and the side effects are a little tough a times but versus the obvious I’ll take it and be thankful. Main problem I have is the gastro issues. Mainly diahhreah 24/7 and very little help comes from anti meds. I have not lost any appetite or have any problems eating. I have regained a lot of energy and breathing is much better. I also recommend to anyone with IPF to get a c-pap machine to sleep with. I’m positive that has helped me greatly as well.

    • I was diagnosed with IPF in August 2000, and went on a clinical trial with Ofev in April 2002 at 150 mg twice a day. I have experienced a slow decline since then, but feel the “slow” is most probably due to Ofev. The major side effect is diarrhea and I take anti-medication first thing in the morning. This usually covers me for the entire day, but not always. At that point, a take a second anti which seems to correct the problem.

      • Charlene Marshall says:

        Hi George,

        Thanks for reading my columns and getting in touch via the comments. Glad to hear you feel the “slow” decline is attributed to Ofev, I hope this is the case for all of us 🙂 Many can certainly relate to the GI issues, and I’m glad the anti-medication helps. I hope this continues to benefit you and reduce the GI issues associated with Ofev for a long time! Thanks for writing.

        Regards,
        Charlene.

    • Charlene Marshall says:

      Hi Richard,

      Thanks for writing and sharing about your experience of Ofev for about 20 months now. Glad to hear the anti-fibrotic drug is keeping it at ba for you; it is just the pesky side effects that sometimes make it difficult to deal with huh? Have you tried sublingual (under the tongue) immodium to help with the GI issues? The regular oral dose of immodium wasn’t enough for me but the sublingual tablets have been life-saving! Thanks for sharing information about the CPap as well. I’ll look into this!
      Charlene.

  8. Marilyn says:

    I am 80 years old. I was diagnosed with IPF in 2014. I began Esbriet, and experienced nausea to such an extent that I couldn’t continue. I heard about Ofev while in pulmonary rehab and got a prescription through my dr. I started ai 150 twice a day, but experienced so much diarrhea and nausea that the dr reduced me to 100/day. I still have some diarrhea, but manage it with loperamide. My dr told me I didn’t need to see him for a year in January, as I am holding steady although with a slight increase in cough. I will have hip replacement soon with a spinal anesthesia so I can continue to exercise properly. I don’t take it every 12 hrs, but try to, and maybe once a few weeks I’ll miss a dose. So far no oxygen. My taste buds have changed, and I eat more bread than I used to, it seems to help settle any nausea and makes me more regular. I’m watching my liver function carefully and drink only a little white wine and rarely a cocktail.

    • Charlene Marshall says:

      Hi Marilyn,

      Thank you so much for reading my columns and reaching out via the comments. So glad to hear you’re doing as well as you are (ie. no oxygen) with being diagnosed back in 2014. That is so encouraging to read! Glad with the reduction of Ofev to 100/mg that you can tolerate it better and have loperamide to help with the side effects. Goodluck with the hip replacement coming up, and I hope Ofev continues to be tolerable for you. I also enjoy my white wine occasionally! 😉 Take care and keep in touch with how you’re doing, I’d love to hear!
      Charlene.

  9. William Mattila says:

    I too. Have IPF for a long time. Over 15 yrs. I started OFEV 1/18 and was taking stool softeners. Imagine that? Got rid of them 6mo ago. Now I go three times a day. No squirts.sorry is terrible meds for terrible disease. Am gaining a little ground. Keeping it at bay. Breathing stable. Taste is off and metallic taste too. Mentally is a issue with my other meds I don’t sleep good get tired too.

    • Charlene Marshall says:

      Hi Bill,

      Nice to hear from you, thanks for reading my columns and getting in touch via the comments. Sounds like you’re tolerating the Ofev okay since getting rid of the stool softener, that is great to hear and I hope it helps continue to keep things at bay for you! My taste is off as well, wish I could figure out the cause of the metallic taste I have in my mouth. Any thoughts on that? Take care and thanks for writing.
      Charlene.

        • Charlene Marshall says:

          Hi Bill,

          Thanks for getting back in touch with me! Adding stress to the mix of worsening side effects makes sense, I could almost track it to when I am feeling stressed and the metallic taste. Hmm.. I think you’re onto something!

  10. Mike says:

    I was just told yesterday I have IPF and was told about the 2 meds. I stopped at the pharmacy to ask the cost and they told me both of them would cost them $10,000 for a 45 day supply. There is no way on God’s green earth that I can pay that or a part of that if my insurance pays for some. Do all of you pay that much?? Is there a less expensive option perhaps in Canada or Mexico?

  11. Hans Fink says:

    Hello Mike, Yes, the OFEV is very expensive. Luckily for me it is free because I live in Canada & we have universal healthcare. (in the USA I think you call it “Socialized Healthcare”). Hopefully you will someday get the benefits of such a system as we have in Canada.
    I take OFEV twice a day at 150mg a dose. The side effects are manageable, but I do get the GI symptoms. Some weeks are better than others. For a while I lost my appetite & lost some weight. After being on the program for about 3 months the appetite is coming back though I still have no desire for any alcohol, which I used to enjoy with dinner. Every morning when I get up, I tell myself that IPF will never get me down & I will feel better every day. With continued research, who knows that a cure or new meds will come to the market to help us patients to stabilize the condition. Good luck & good health to everyone.

  12. I would love to hear the impact on my fellow IPF members who are taking OFEV if they (like I do) enjoy 2 or 3 glasses of wine weekly.
    Several have mentioned heavy duty headaches of hangover type symptoms.
    Anything else?
    I am new to this environment having just completed my first two months of 100mg OFEV and moving next month to 150mg dosage of OFEV.

    • Charlene Marshall says:

      Hi Frank,

      Thanks for reading my columns and reaching out via the comments. I am on Ofev and have found our PF forums, particularly the one about Ofev very helpful: https://pulmonaryfibrosisnews.com/forums/forums/forum/ofev-nintedanib/ … I still enjoy 2-3 glasses of wine weekly too, and the only thing I try to be more conscious/aware of since starting Ofev is my liver function. This is monitored regularly due to the drug and I am aware that alcohol of any kind can worsen the liver so I am just mindful of that when I think about having some wine. Hope you’re toelrating the Ofev okay so far! Take care, Charlene.

  13. Annette Merrill says:

    I am 66 years old and was diagnosed with IPF in October of 2016. My Pulmonologist could give me no encouragement at that time as to whether I would live to see the holidays that year. He’s a good doctor, but has a lousy bedside manner. Well I’m still here, for what it’s worth, but getting weaker by the month. I was started on Esbriet and oxygen from 2016 up to March of this year, 2019, and am now on Ofev (also still on oxygen). These drugs are ridiculously expensive! But the makers of both provide help with paying for them. Your doctor should know how to assist with directing you on how to contact the manufacturers for that.

    After stopping Espriet, I found that it had been causing deep depression for me, which vanished when I switched to Ofev. Of course now I must deal with a whole new set of side effects and am much weaker than I was in 2016. Additionally, all these side effects cause their own depression and anxiety. Hard to be motivated to go on.

    Although I have appreciated reading the column by Charlene, I’m much more interested in hearing from folks over 60. Life just seems so difficult at this point, and I would love to hear any helpful tips from anyone over 60 on how to view whatever time I have left in a positive light. Also, is anyone aware of what “end stages” of this disease looks like? Will I just keep breathing less and less until I stop entirely? Are there milestones or warning signs to look for? As mentioned previously, my pulmonary doctor does not seem to know how, or is unwilling to discuss anything of a personal nature, so I’m eager to find other sufferers who might be willing to share.

    Thanks for listening!

    • Charlene Marshall says:

      Hi Annette,

      Thanks so much for reading my columns and getting in touch via the comments. I appreciate the time you took to share your story!

      I agree with you re: your doctor and that he/she should know how to direct you to the manufacturers of this drug to help with payment. They are both very expensive here as well. Wow, I’d never heard of someone being able to conclude the depression from Esbriet, that is really important for others to be aware of. I am also on Ofev and it brings with it a whole slew of GI issues, which can make it even more difficult to go about your daily activities. Have you tried the sublingual immodium tablet? For some reason this method of consuming immodium (under the tongue) works 1000 times better when it comes to managing GI symptoms than the oral tablet does. Just trying to get that little tip out there!

      Are you a member of our PF forums yet Annette? Lots of people/discussions on there about living with IPF over 60. You can sign up on the following link: https://pulmonaryfibrosisnews.com/forums/ Feel free to check it out, lots of topics that might be of interest to you!

      Charlene.

  14. I have IPF,diagnosed and been on OFEV for2 months! The diahrea, food taste horrible,I am doing Laser Therapy performed by a Chiropractor, which breaks up the scarring and heals the lung under it!!! I prefer to get rid of the scarring instead of waiting for it to kill me, everybody should check into this, can not hurt!!! Drug manufactures just want your money!!!

    • Charlene Marshall says:

      Hi Dennis,

      Thanks for reading my columns and reaching out via the comments. The side effects from OFEV can be awful, I agree. Sorry to hear you’re struggling with them! Laser Therapy has been a very popular topic of discussion among our forums: https://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy-results/ … with lots of people noting success. Hopefully the laser therapy is going well for you too. Thanks for sharing that you’re trying it! Best of luck to you and thanks for writing 🙂
      Charlene.

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