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    • #14807

      Recently, a wonderful member of our forums posted that she’d read somewhere that an individual on Esbriet mentioned having a glass of wine. She was particularly interested in whether or not any doctors have advised against drinking alcohol altogether while taking this particular anti-fibrotic medication.

      Has your doctor given you explicit instructions on consuming alcohol (even one beverage) while on Esbriet or OFEV?

      I am on OFEV and I don’t remember having this conversation with my physician, although I just may not be able to remember. I have had the occasional glass of wine or beer while using this medication, and I don’t think I’ve suffered any ill effects as a result. While doing a quick search online, there are many websites that say alcohol consumption should be limited while taking this drug, and even some that say certain food and alcohols can interact with the medications. I am cautious about the credibility of these websites, though. So as a result, I thought I’d pose the question here and ask if anyone can recall a conversation(s) with their physicians about consuming alcohol while on anti-fibrotics (Esbriet or OFEV). If so, can you share details of that conversation with us?

      If ever in doubt or unsure about this in your particular situation, it is important to contact your doctor to discuss this matter directly with him/her. I’m curious about any/all experiences that you have to share!

      Thanks in advance.
      Charlene.

    • #14830
      Maureen Lake
      Participant

      Prior to going on Esbriet my Dr discussed my alcohol consumption – I did not drink much 1-2 drinks per week.  She also stated use of Tylenol & any other drugs broken down by the liver be used with caution.  My liver enzymes were checked & found to be elevated, caused by fatty liver.  I saw the liver specialist who suggested some dietary changes & medication changes – no Tylenol, motrin changed Nexium to Pantoprazole – Absolutely no alcohol & cut back on carbonated beverages & Caffiene.

      • This reply was modified 3 years, 1 month ago by Charlene Marshall. Reason: formatting
    • #14832

      Hi Maureen,

      Thanks so much for writing to us and sharing the information your doctor provided about alcohol and Esbriet. This is really good for me (and others) to know, and I appreciate you taking the time to share it with us. I typically try to use Tylenol only when necessary, as I know it is bad for the liver but good to know about the carbonated beverages and caffiene as well. Thanks again 🙂

      Cheers,
      Charlene.

      • #14894
        Joyce Douglas
        Participant

        I was not given any instructions on drinking a glass of wine or a rum and coke either.  My Dr. asked how much I drank and I said about 3 drinks a week and he wasn’t concerned about that.  However, I developed a bad hip and have been taking Extra Strength Tylenol 2 or 3 times a day to keep the pain at bay. I visited Physio to get help with it and she did all she was able to do and suggested I talk to a Dr. specializing in hip replacement, but my IPF would probably prevent surgery due to my bad lungs.  However, I went back to my Chiropractor and he has ‘finally’ got my hip to stop hurting and the Tylenol is now just very occasional.   I am happy to say I may only have it one or twice a day – when needed. However, I have found that a glass of wine at bedtime helps me sleep better. I’m not sure how my Dr. will feel about this, so will discuss it in Dec. when I next see him.

        • #14902

          Hi Joyce,

          Thanks so much for writing and contributing to this topic thread. As always, it is wonderful to hear from you!

          Sounds like your experience around drinking wine or an occasional other drink is similar to others, in that, your doctor doesn’t sound concerned about a few drinks here and there. That is good news, and I hope mine agrees (I actually don’t remember any conversations about this) because I love the occasional glass of red wine, especially now that the weather is turning colder. Did you get snow last week in MB? We had wet snow here last night but none of it stuck around, thank goodness!

          I am so glad that the Chiropractor was able to relieve your hip pain! How awful to hear that the only suggestion from physio was a hip replacement. Did the pain in your hip happen suddenly Joyce, or has it been developing gradually? Either way, suggesting a hip replacement must have come as a shock!

          I also find that about wine at bedtime, and can’t imagine it is harmful to us. Let me know what your doctor says about this in December, and I will report back on my doctor’s response too. Hope you’re doing well!

          Thanks,
          Charlene.

    • #23112
      Paul Caden
      Participant

      have been taking Esbriet for 2 months now, few mild side effects (grumbling tummy, tired) also take about 6 glasses wine/week and 2 mthly blood tests have been fine. Will know if working at my March 3rd RDV, fingers crossed!

    • #23113
      Mark Koziol
      Participant

      Hello Paul, thanks for the update. I hope for positive results on March 3rd. Take care, mark.

    • #23118
      Suzanne R Brennan
      Participant

      My doctor asked initially about alcohol use and I said I usually drank a glass of wine with dinner – not every night but maybe five of seven. He didn’t seem concerned but did say I needed to have regular liver enzyme blood tests once on (first) OFEV and then (second Esbriet). One time, I was high in two of the enzymes so we discussed use of NSAIDs. He said he would prefer I cut back on use of any of those, which I did, and I cut back on use of alcohol as well – now have one glass a week and sometimes less.

      That’s personal preference though, not a doctor requirement. I find that drinking a glass of wine interferes with sleep – I fall asleep great but wake up 2-3 hours later and have trouble falling back to sleep so I cut down on the wine.  I miss it though…

    • #23116
      Frank Loeffler
      Participant

      I guess the real question is associated with elevated potential of liver issues with Ofev or Esbriet plus other which could be Tylenol or alcohol.  There has not been any meaningful dialogue on these issues.  In my specific case I did ask my treating physician who asked how much alcohol and the type that I consume (3-5 glasses of wine per week) and he advised that it should not be an issue.  I did not ask about distilled spirits….has any reader asked that distinguishing question of their medical provider.  I did ask the interviewer from Ofev and was advised that she did not see anything in the literature which is not a scientific professional answer.

      In my mind the issue of my liver still is very open for understanding.

    • #23123
      Sara Tanner
      Participant

      My husband has been on OFEV for 4 months with no major side affects. He is a beer drinker & his Dr said as long as his liver panels stayed in range, there is no reason he couldn’t drink beer on occasion. He drinks a couple at night. So far.. So good.👍

      Also since his pneumonia is gone & taking OFEV , his PFT showed an increase from 62% to 87% output & CT showed no inflammation and NO progression on his IPF!! He is now only using 2/3 ltrs O2 when sleeping or  active & NONE at rest!!

       

       

       

       

       

    • #23128
      Mark Koziol
      Participant

      Hello Sara, thank you for sharing. Pneumonia is horrible for pf patients. I happy to hear of your husbands improvements after his recovery from this. Cheers, Mark.

    • #23149

      Hi Frank,

      These are really good questions, and good dialogue to bring up because you’re right, OFEV can already elevate your liver enzymes, which also happens from drinking alcohol. I too asked about wine and my antifibrotics (1-2 glasses a week) and my physician told me that it wouldn’t be a problem. Avoiding it doesn’t seem to be in the literature anywhere, and my physician said (in less words) that having it moderation shouldn’t be an issue. Do you get your liver tested regularly since starting the Ofev? I’m sure if the liver tests show up as concerning, we’d be advised to stop drinking any alcohol.

      If anyone has had these conversations with your physician and they advised otherwise, please connect back with us and let us know.

      Charlene.

       

    • #23150

      Interesting to hear this Suzanne, thanks for sharing! It sounds like your physician was like mine, and initiated liver checks to ensure that both the drug and any alcohol consumption didn’t cause problems with my liver enzymes. Sorry to hear the sleep disruption with wine, that is unfortunate. I’d miss it as well if I had to stop, though I sometimes don’t even have a glass a week, I just enjoy the taste of it when I do. Thanks for sharing your experience with this, I anticipate it to be similar across the board or hope for that anyways.

      Char.

    • #24557
      Craig Decker
      Participant

      I’m on Esbriet and I have about 4-5 drinks a week and, because of a recent knee replacement, I take Tylenol between 1-3 times a day.   My liver function tests have been normal for months. My pulmonologist didn’t seem concerned about either the booze or the Tylenol.

    • #24568

      Hi Craig,

      Thanks so much for contributing to this topic thread and sharing your experience with us. That is good news: no elevated liver function tests. I also enjoy a glass of wine a couple nights per week, so good to know. Thanks for sharing and I hope that knee heals up nicely! Char.

    • #30277
      Christine McCann
      Participant

      The possibility of elevated liver enzymes is the reason for blood tests every few months so anything that can add to that problem needs to be monitored, I was told initially that Esbriet did not interfere with any food or other meds.but on it;s own can elevate liver enzymes so logic dictates caution. I don’t drink much at all any more cause it doesn’t taste good to me now. If I am having a lot of pain for what ever reason I take either aspirin or Aleve.

    • #30289
      Denise Stogdill
      Participant

      I’m not on anti fibrotics but my doctor does not want me to drink.  He says there’s to much sugar in alcohol and i need to stay away from alcohol to keep my inflammation low.  He’s also taken me off of Tylenol which was my go to for arthritic pain.  He says Aleve is easier on the kidneys.

    • #30291
      John Penn
      Participant

      I have been on Esbriet for 4 years.   I have maybe 2-3 drinks a month…sometimes a beer, sometimes a rum and coke.   Thus far all of my liver panels have been normal.   Like most things individuals metabolize things differently so my experience may not be the same as others.   Be safe and wishing all of you the best

    • #30296
      Tim Ortiz
      Participant

      I have elevated liver enzymes and do not usually drink alcohol however one dinner date I had two cocktails and regretted it. I had liver pain and felt awful that night I am on Esbriet. I also suspected I was a little dehydrated. Staying hydrated seems to be a big deal for me. I stopped using oxygen at night since I would dry up, being at 88 on my oximeter.

    • #30523
      Paul Caden
      Participant

      I have been on esbriet for 2 years now and must admit that I take about 6 glasses of wine a week avg and have been lucky to have good liver tests. the one score which has being going down is DLCO.  FVC etcetera have been fine do lots of sports and eat well hopefully I will stay healthy for several more years.

      • This reply was modified 2 days, 6 hours ago by Paul Caden.
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