Drinking Wine with Pulmonary Fibrosis.

[Deleted User]

Hi Charlene, @charlene-marshall
From a general point of view, it is now recognized by doctors and WHO that moderate consumption of wine is rather good for health. This is probably true for good health people.
Is it the case for us ? I never discussed about it with the medical team. One more topic to add to my list for my next visit (mid of march) 😉
What I’m sure is that a Glass of Wine is a great pleasure, absolutely in line with my “patient’s” rules of Life : Enjoy Life as long as you Can…
Here in France we have a proverb saying : ” Le vin n’est jamais si bon que quand on le boit avec un ami.” something like : “Wine is never so good as when you drink it with a friend.” and this is the most important to remember !
Take Care
Jean-Michel

[Tammy]

Charlene, does the consumption ever make you feel like your heart races?

[Carlo De Pellegrin]

Charlene and anonymous, I used to be a one or two glass of red Italian wine almost every day. Since the IPF in September 2020 and the Esbriet I have reduced that to one 6 ounce glass 4 0r 5 times a week either red or white depending on the food. It is a little pleasure in life…..:):):)

[Charlene Marshall]

It definitely is Carlo – and one I don’t want to give up if I don’t have to! 😉 All in moderation right? I’m glad you’re still enjoying a glass a couple of times a week. I’ll have to check out some Italian reds! Thanks for writing.
Char.

[Charlene Marshall]

Hi Tammy,

Thanks for writing – no, I (thankfully) can share that I don’t have the experience of my heart racing after drinking wine. I wonder if anyone else does?

[Charlene Marshall]

Hi Jean-Michel,

Thanks so much for getting back to me, I was really curious about this topic and what others thought or have been told. As I mentioned in my DM to you, I was quite happy to enjoy a small glass of read wine last night to “unwind” after a busy day …

I thought I’d heard that moderator consumption of wine, particularly red, can be good for overall health. I suspect the issue for us with IPF/PF and consuming alcohol, might simply be its reaction with our medications but I am certainly no doctor. I will also add this to my list of discussion questions for next time I go visit the pulmonologist.

 

I really like that proverb you share and believe in it completely. Friends and wine can lift our spirits, thats for sure, as its happened many times throughout my young adult years so far. Thanks for sharing! 🙂
Charlene.

[Malcolm Mann]

Hi Charlene

I have read everything I can locate on OFEV & alcohol consumption, and have not found any recommendations either for or against. My personel research over only the last 4 weeks is inconclusive, I have had several beers, and red & white wine with out any obvious side effects.

My grandfather was a noted Sydney surgeon (and vigneron) and supplied wine daily to all his patients.

cheers

mal

[Charlene Marshall]

Hi Mal,

Thanks so much for getting in touch with me about this topic – it is of course one of interest, as my desire for wine-tasting and exploring different wineries grows! I don’t want to over-indulge of course, but am curious about what others have been told or do in terms of alcohol consumption since their diagnosis. I appreciate your sharing, and letting me know that the results of your research are inconclusive. I like that answer 😉

Cheers,
Charlene.

[Libby]

I am going to go with Jean-Michel’s philosophy!!   I never drank much at all until my 50’s and haven’t had hard liquor since college.. no going to martini bars for me!   But my husband and I LOVE wine and derive much pleasure from sampling different types of Italian and Portuguese wines (mainly because those countries are our frequent travel destinations) , drinking a glass  before and during dinner each night.  Even though we are both retired, it is a wonderful way to say “okay, chores for the day are done, and it’s time to relax”.   I think wine’s benefits to our moods and to our overall feelings of well-being are more important than any should’s or should not’s.  Red wine is an anti-inflammatory… I don’t know if my achy muscles and joints know that for sure, but I do feel better and it’s better for me than taking an Ibuprofen! One thing I do know is that it adds a few pounds around the waist because alcohol is mostly carbs.  Most yummy, pleasurable things in life have a trade-off.  I’m sticking with the wine and the pounds… I’m a 7-time grandmother, so a little wine weight is okay with me :-))

[Charlene Marshall]

I would do almost anything to join you @travelingnana for wine tasting in those regions/areas of the world you mentioned. I’m so jealous 🙂
Char.

[Kay Kagy]

Hi Charlene,
I talked to my pulmonologist about wine as well as that is my favorite (and probably only) drink and since I was on Ofev wanted to know. I have been given the green light to drink a glass or so whenever I want! Yea!!!

[Charlene Marshall]

That is wonderful news Kay, thank you so much for finding out this answer and sharing it with us! I like your pulmonologists answer so I’ll go with that 🙂

Are you a red or white wine drinker? What kind of wines do you enjoy most? I still have a lot to learn but I am really enjoying all the learning that comes with wine tasting.

Cheers,
Charlene.

[Chuck Pefley]

Hi Charlene,

I received my IPF diagnosis July 2016 and then in January 2018 a rare & nasty lymphoma diagnosis. The first 6 months of 2018 were spent in and out of the hospital enduring chemo treatments. Not fun. But, I achieved remission in June 2018 but was cautioned that “remission would likely be counted in months, not years”.

My outlook on life has morphed somewhat over the past couple years and become more focused on “quality” versus “quantity” of life. (Please don’t misunderstand this to mean I have any sort of death wish. I don’t.)

However, there are two quotes I encountered 40+ years ago that still resonate with my thinking at this point in my life …

Eat Dessert First … Life Is Uncertain!
and …
To Enjoy Life, Take Big Bites, for Moderation Is For Monks!

Life is to be enjoyed and in my opinion wine should be enjoyed as well IF it brings you joy.
Your mileage may vary….
Best Regards,
Chuck

[Charlene Marshall]

Hi Chuck,

Thanks so much for getting in touch regarding this topic, and sharing a bit more about your story with us. Gosh, you’re very strong to have endured what-sounds-like such a difficult 6 months doing chemo and being hospitalized. I hope your remission status lasts much longer than they suspect, and it is indeed in years…

Really love the quotes you shared! I collect quotes, and since my diagnosis, many of them are about enjoying life and not taking things for granted which I see as fitting for both of your quotes! I will add them to my book, and focus on the quality of our life, not quantity… such a good reminder!

Thanks for sharing, and wishing you well Chuck.
Warm regards,
Charlene.

[john styles]

I have to confess, I have a glass of wine a few times a week with my wife and I really enjoy our wine time.  The only time it bothered me is when my coughing got real bad and wine and salsa would set me off with a coughing episode, the laser has so far helped my cough to where I enjoy my wine. I have been told not to drink for 20 years but everything in moderation. My favorite quote “life s to short for cheep wine” Next time I have a glass I will toast everyone to have good health.

[Charlene Marshall]

Hi John,

Thanks so much for sharing your thoughts on this topic. I think that is the key to everything in life, isn’t it: all in moderation! I too have a glass of wine occasionally, my favourite is red, and thoroughly enjoy this. Last night I opted not to be online, and read in the bathtub with a glass of wine for almost two hours. It was so relaxing, which is what I needed. I’m glad the laser has improved the cough for you, so you can indulge in this little luxury once in awhile again. Great idea to toast to everyone’s health! Ah, wouldn’t it be great if we could all enjoy a glass of wine (or our favourite beverage) together some day?

Another favourite quote of mine pertaining to wine is: “life is what happens between coffee and wine”. 

Enjoy your day!
Charlene.

[Beverly Williams]

My husband has recently moved to the point of preparing for a double lung transplant.  The doctors said no alcohol for the rest of his life because of the strong medication he will be on.  But up until now, it was no problem.

[Charlene Marshall]

Hi @bevwilliams62

Thanks so much for sharing and I hope the process of preparing for transplant isn’t too gruelling for you and your husband. It is a long one! I haven’t heard of a doctor saying no more alcohol for the rest of your life, even post-transplant with all the medications. This might be a good question to ask other patients and/or for a second opinion. Like all things, it would be important to consume in moderation I would imagine but I haven’t heard of alcohol being an absolute no. I am not a medical expert or physician of course, but just relaying my experience.

Has anyone else post-transplant been told this information?
Char.

[Carlo De Pellegrin]

Wow! This discussion has been going on for two years!

I am a wine drinker, almost always red Tuscan Italian and one glass almost every dinner and occasionally a second or part of a second with fruit and cheese after dinner. When I spoke with Dr Shapera ( when I entered the IPL clinic at TGH in September, 2020 ) he had no objection to this.

Occasionally with a seafood or fish dinner I will drink a glass of white.

Because I take Esbriet with my meals, I always wash down the tablet with lots of water.

[Charlene Marshall]

Thanks so much for sharing your experience with us Carlo, I know it will help others to hear what your Doctor said about consuming wine with PF and/or on the anti-fibrotic medications. I think the discussion remains open is because patients are getting varied responses from their physicians. One person reported their Pulmonologist said absolutely zero alcohol. It helps hearing others’ experiences 🙂

Thanks for sharing yours, I’m glad your Doctor had no objections to this… I enjoy the occasional glass of wine as well.
Take care,
Charlene.

[Les Viegas]

Hi Charlene,

The reason most pulmonologists advise IPF ( particularly post-transplant) patients against drinking alcohol is because many of the drugs that these patients take put a tremendous stress on the liver and drinking alcohol can exacerbate the problem. Drugs such as Imuran, Cellcept and corticosteroids are very toxic to the liver and if the liver enzymes (ALT, AST, Bilirubin, etc) increase beyond acceptable ranges, those drugs may have to be discontinued or dosages decreased to the point where they become ineffective.

Therefore, if any IPF patient is interested in drinking a glass of wine ( not hard alcohol) occasionally, it should not be a problem as long as the liver enzymes are tested routinely and before it gets to a point of no return. As my lung transplant pulmonologist told me several years ago: “you are not going to live forever, so enjoy life, drink wine occasionally, but DO NOT overdo it!” and I have followed her advice religiously for the past 7 years. SO far there has been no impact to my liver enzymes or kidneys.

Hope this information helps.

Les

[Charlene Marshall]

@les-viegas

That helps very much! Thank you for sharing and taking the time to explain that 🙂
Char.

[john styles]

My favorite time was with my wife splitting a bottle of wine, now I have a glass of water.  I would only say ” not so fast on drinking” I have some liver scaring. weather from fat or Hep C that was cured 5 years ago. When I had my liver biopsy they confirmed scaring and fat. When I had a lung thoracotomy ( lung biopsy where the widen your ribs and take samples from the lung, I had a connective disease with the lining of the lungs on the exterior that the doctors did not know what was causing it, this can not be seen with the cat scan.  3 weeks ago I got sick with what I thought was the flu and my pulmonologist prescribed a week of penicillin and I was not feeling good so I stopped drinking and stopped eating high fat deserts and cut back on tea and coffee. My lung saturation went from 86 to 89 sitting to 93 to 95 sitting and sometimes 96. Still lower when I move around.  I would say not so fast on drinking, I thought I was safe with normal low liver enzymes. Now I am afraid to have a glass of wine,  I think all the doctors can do for us is treat the symptom’s of our lung disease. I would think auto immune.

[Jerry Genesio]

Charlene: I often have a glass of red wine with dinner. Also, every weekend since the pandemic confined us to quarters just about one year ago,  my wife and I play Scrabble to entertain ourselves and usually have a vodka tonic or highball, but never more than one. I was diagnosed with IPF in January 2020, but I have never been on a prescribed drug specifically for IPF. I was offered Esbriet but declined due to possible side effects and possible incompatibility issues. I’m on nine prescribed drugs for several other conditions, but the wine, vodka, and whiskey have never been an issue (Hallelujah! Hallelujah!)

[Charlene Marshall]

So great to hear Jerry, thanks for sharing! I’ve never had an issue with an occasional glass of wine here and there, either. I suspected alcohol in excess would likely cause inflammation, leading to other issues but I am similar to you and try to keep the amount I drink at once minimal and reserved to only weekends. Thanks for writing,
Char.

[Les Viegas]

People with IPF can all share their individual personal experiences with drinking wine which may not all be the same. However, extrapolating from those individual samples of “ones” is fraught with risk. There are two ways to get a definitive answer: either based on a proper statistically valid cause and effect analysis, or relying on the advice of experts who have treated thousands of IPF in general or lung transplant patients in particular especially if the primary concern is the efficacy of medications that affect the liver or kidneys and given the well known fact that alcohol does have a variable effect on the liver.

[JoAnn Uhl]

Hi i have been on Ofev for around 2 weeks with no side effects so far. The specialty pharmacy that sends me Ofev told me it was ok to have a few glasses of wine per week! Just make sure your Doctor does liver test !

[ChArles Bietsch]

Charlene…. It would depend upon what type of medication you are on. Some such as cellcept and prednisone are toxic to the liver and kidneys and preservation of their function is necessary for king yet survival. Alcohol of any kind is not recommended

Same if one is contemplating a transplant. Liver and kidneys need to be fully functional to be approved, and once approved alcohol in most programs is for forbidden

Just a few thoughts

Chas

[Charlene Marshall]

All really good points @chas2712 – definitely important to consider your personal medication regimen before decided whether or not you can safely consume alcohol. There’s so much for us to consider so its always important to discuss first with your treating physician. Thanks for taking the time to write and contribute to this conversation thread.

Regards,
Char.

[Charles]

WOW! I am glad that my doctor doesn’t say what all of you have said. So many variables. The one thing that i have noticed is that most of you have not had this illness for as long as i have. I was diagnosed in late October 2013. Up and until then i was a drinker of any and all types of alcohol. As time passed i could feel the difference of the hard stuff. So i pretty much quit it. I continued to drink red wine. That also started to affect me a little different, so i went to white wine. Lately i have reduced my drinking to a handful of beers a week, with an occasional glass of white wine when have some BBQ’d salmon or a glass of cab with a filet. All of these pretty much have the same result. I get tired and want to take a nap and makes all of my extremities very heavy with and my breathing also suffers. I am working on nine years and probably don’t have much longer. So, i am not trying to scare you however you might take it as a precaution. But what i am really trying to say is that drink and enjoy the hell out of it now, because you might not be able to do it as your IPF progresses. Just as a note, i know that it is not the real stuff, but i have been trying SAKI (a rice wine) and it seems that i am having no problem with it.