Alcohol & Anti-Fibrotics (OFEV & Esbriet)

[Maureen Lake]

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.

[Charlene Marshall]

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.

[Joyce Douglas]

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.

[Charlene Marshall]

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.

[Paul Caden]

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!

[Mark Koziol]

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

[Suzanne R Brennan]

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…

[Frank Loeffler]

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.

[Christine McCann]

You should ask your Pulmonary Dr. questions about IPF and any lung issues, primary care physicians don’t always know a lot about specific illness issues.

[Sara Tanner]

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!!

 

 

 

 

 

[Mark Koziol]

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.

[Charlene Marshall]

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.

 

[Charlene Marshall]

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.

[Craig Decker]

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.

[Charlene Marshall]

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.

[Christine McCann]

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.

[Denise Stogdill]

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.

[John Penn]

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

[Tim Ortiz]

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.

[Christine McCann]

Blood oxygen levels drop to there lowest while sleeping so you should always use your oxygen at night or whenever you sleep.

[Paul Caden]

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.