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    • #20675
      Martin Denny
      Participant

      I have been using Ofev this year and find that if I drink alcohol I get a bad hangover that can last more than a day.  I assume this is due to the effect Ofev has on liver function and that alcohol is not metabolised as readily. Has anyone noticed this?

    • #20676
      Thom
      Participant

      Have your liver checked I’ve never been a drinker but now I have cirrhosis

    • #20679
      Duncan Fowler
      Participant

      I have found that OFEV and wine causes me to have explosive diarrhea.
      I miss my wine at night!

      • #20697

        Hi Duncan,

        Thanks for sharing this! I am on OFEV as well, and enjoy my wine in the evenings. I haven’t found the issue you experienced, which is most unfortunate. Does this happen with both red and white wine?

        Regards,
        Charlene.

    • #20678
      Liam Mullaney
      Participant

      Hi Martin, I’m on Ofev for over a year and have had one too many on a few occasions but didn’t have a hangover and liver is ok. I’m a beer and wine guy, so maybe the mixture of drinks.

    • #20720
      Martin Denny
      Participant

      Good to have others observations, thanks.  I am having ongoing liver function tests and all results are within normal range, but if I have 2 standard drinks (either wine, beer or spirit) I get a headache and that ‘hangover’ feeling.  If I have more than 2 drinks the hangover can last for 2 days.  This has only happened since going on Ofev.  Looking at the results from the initial trials of Ofev, one participant complained of bad hangovers.  Perhaps I am getting a message to stop imbibing.

    • #20763
      Duncan Fowler
      Participant

      Charlene,

      Unfortunately yes.  For me, it is Red or White.

      Although If I have my wine with a meal all seems to be OK

      Dunc

    • #20765

      Hi Duncan,

      Thanks for getting back to me! I am glad you at least can have some wine as long as you eat it with something. Having a meal/snack with something tends to help with the GI effects of Ofev for me. Goodluck!
      Charlene.

    • #20779
      Suzanne R Brennan
      Participant

      I find that if I have a glass of water right after some wine and just consistently stay hydrated, I don’t get the headache/hangover you have been getting. On occasion I have noticed a headache after having wine the night before but rarely if I drink enough water or other liquids.

      I have significantly cut back though as I used to have wine every night with dinner and now I have a glass once every two weeks or so. I miss it more if out to dinner with friends.

    • #20794

      Hi Suzanne,

      Thanks for writing and sharing your experience with this! Hydration is so important – I’ve learnt that the hard way since being diagnosed. Do you find in general it is harder to stay hydrated, or that you dehydrate easier since your diagnosis? I’ve never struggled with dehydration and now have gotten myself into trouble twice as a result of being dehydrated, albeit just briefly and nothing serious thankfully. I just wonder if there is some sort of physiological change causing this to be more likely to happen? It is strange!

      Hope you’re doing well.
      Charlene.

      • #20811
        Suzanne R Brennan
        Participant

        Personally I think being dehydrated is linked to O2 use. It dries out my nasal passages a lot. I use it at night and with exertion but not while sitting at rest. In the morning, I try to drink about 14-16 ounces before I have coffee to ensure I am hydrated before the caffeine causes more dehydration.

        I am doing well with Esbriet and now I am in the Galapagos trial as well. Of course I could be taking the placebo but I am seeing ever so slightly higher sats than before. Like at rest, I am now 95-96 where before I was 93-94. While exerting, I still use about the same level of O2 but again have 2-3 additional points when I measure my O2.

        My next PFTs aren’t for a few weeks so that should help me see whether I have sustained or even improved results.

        I hope you are well and that the heat and humidity has now decreased where you live. Take care.

    • #20818

      Hi Suzanne,

      Thank you so much for your reply and letting us know how you’re doing! I agree that dehydration can also be caused by oxygen use, unfortunately. Really good idea to drink lots of water before adding coffee to the mix of potential things to dehydrate us.

      Glad you’re tolerating the Esbriet and that you’re on the Galapagos trial, that is wonderful news. I have my fingers crossed that the slight improvement you’re having with the saturations is due to the drug, not placebo. Keep us posted on how you’re doing and what the results of your PFTs are. Hopefully that brings improvement too!

      Kind regards,
      Charlene.

    • #20841
      Jofac O’Handlin
      Participant

      Hi All, I am an occasional drinker, on OFEV (easier to spell) for 4 years. Now on 100’s as diarrhea and associated problems on the 150’s. I have not noticed worse hangovers following the occasion over indulgance. However, I find it essential to stay hydrated. Yesterday, I missed my 2pm cup of tea, and by 5 was ucomfortably heady (not a full blown headache but going thzt way). A glass of diluted fruit juice corrected that within 1/2 hour. Joe.

    • #20842

      Hi Joe,

      Thanks for writing and sharing this tip about hydration, very important for all of us to remember! Sorry to hear about the issues with Ofev 150mg, I am hopeful you’re tolerating the 100mg a little easier. I’ve heard of a lot of folks having to make this change. Take care, and feel free to write any time. Good idea as well re: the diluted fruit juice as many of them are too sweet for me but I bet diluting with water would be quite refreshing!

      Thanks,
      Charlene.

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