Hep C Discussion Forum

Miriam,

With 800 bottles, you can cook a lot of Mussels! How about an auction and going on a nice vacation? Wine auctions are big business down here.

Hey Marjim,

You are right! This IS an interesting thread, and, I too, REALLY enjoyed seeing tig's old graph on "alcohol burn-off" rates. Really good info to know about that (alcohol left in foods after cooking)! Very interesting indeed. Of course, this aligns with your original question in the other thread (about whether to eat the mussels), so good there is lots of info here!

I had no idea about alcohol burn off rates, I always wondered about it tho. I had my definite suspicions, but I never bothered to find out/figure it out. I too had always kinda assumed much of the alcohol would burn off, but the residuals in tigs graph surprized me some! I do not drink, period, (maybe one drink at New Year kinda thing) so, I have never really had or will have any real concern, although ... I did consume enough alcohol as a young teenager to seriously pickle me and last me about a full lifetime I recon! I practiced back then, WELL, an intense immersion programme so to speak, and with large quantities. My whole family practiced up well with alcohol, and most of them still do. I believe my early repeated (inadvertent aversion therapy) alcohol poisoning episodes, luckily, helped prevent me from becoming addicted/dependent on alcohol! I could have easily gone the other way.

I still cook with a bit of wine here and there in certain dishes and sauces, so found the graph info interesting. Until my liver has regain further health and function I avoid cough syrups/analgesics/fats/etc., just about anything that requires extra "work" from my liver. Needless to say (and luckily for me) alcohol is an "easy" one (for me) to forgo. For others, alcohol is not an easy thing to drop. 

I had a dear friend once who loved to cook and entertain, it was always such a pleasure to be treated to a dinner at his house, I got invited to one of his famous fondues - it was absolutely delicious (smashing I should say) as being a tee-totaler by then, I was surprized to find myself fairly well soused from the vast quantities of expensive wine and kirsch he had imbued in his delectable fondue. It surprized me HOW drunk I got from that fondue! After that, i always did wonder just how much alcohol got left behind in cooked foods - never bothered to find out - until now!!

Good info to know. tig is such a good knowledgeable info finder guy.

But bummer if it spoils looking forward to your mussels. Drat that anyway.  C.

 

I gave it all up, with the exception of the occasional NA beer. I know it has a .5% alcohol content, but I'm a risk taker and that to me is an acceptable one for this almost 60 year old thrill seeker. Going back to the hard stuff and full strength spirits isn't in the cards any longer. It's a personal choice and I was one of those people that could never drink just one.... I enjoyed it too much.If you hear anything, I will deny it, lol   I prefer to live out my days without all that drama and potential health complications.

An interesting interjection is the difference between male and female Hep C statistics. It is uncommon for females compared to males to develop late stages of fibroses due to Estrogen (of course it does happen also.) Women have this protection until they reach menopause. However, there is the consideration some people (they don't know why) continue to climb the fibroses scale AFTER reaching SVR, where as most regress, again in the male population more than females. I've never been a drinker anyway, just the odd social glass of wine. Saying that, I've nearly been infected I suspect the best part of 20 years. Of course as soon as I knew I had Hep the I abstained straight away. But, even if there was an error of 20-30% that would still give me a very low fibro scale score to F1-2. One thing alcohol does is kill liver cells, so the average person that drinks frequently will have most probably some degree of fibroses without having Hep C. So, one way to look at it, is the liver needs at least a few years to heal after years of inflammation etc. There is also the added weight (I read recently) there is a 30% more chance of people with Hep C developing Parkinson's disease. So, in general we have to look out for the fact its not just our livers, new evidence suggests it attacks our central nervous system too. With all the extra additional burden on our overall system, our entire bodies have to heal. I guess drinking the odd glass of wine will just regress the healing at what ever stage fibroses is, because its not just our livers. I do know there is mixed evidence some stating we are totally cured, and others not, but general advice is if you have no fibroses you can return to normal life again and just have the odd check with your GP. At the end of the day, it is up to everyone how they wish to continue. It is your body and your life. There is no right or wrong, just different opinions. The biggest thing to consider, is the average life expectancy with Hep C is 55 years - world total without curing. That is scary enough to take note and take care, also to respect the fact we have a second chance. Have a lovely day. :)

-- Edited by Loopy Lisa on Tuesday 2nd of August 2016 06:44:25 AM

I have heard that it's undesirably to drink just after training! http://bigessaywriter.com/blog/is-it-worth-to-start-drinking-alcohol will tell much more information! It's my source of knowledge!

Groupergetter wrote:

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Isis, here is a good site that give scores related to fibrosis/cirrhosis from lab results.  MELD, Fibrosis 4, AST/ALT ratio and others.  Just plug in your lab #'s

http://gihep.com/calculators/hepatology/ast-to-alt-ratio/   

My ratio's changed somewhat for the better once I got on tx.  I'm not sure if the results are more accurate with elevated lab results (prior to tx) or when you reach UND and lab numbers are improved? Not sure which gives a truer picture?

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Thanks, Groupergetter, but I think you intended that reply for Dee Dee, who asked about blood work as a diagnostic tool.    I haven't been here for a long time and didn't remember how to use the quote function properly.  The writing above the line in my post was a quote from Dee Dee.   Sorry for the confusion.  

Hi Tig,

Good references.

I have read a recent article about persistence of the virus post-SVR, but can't find it. It also included some autopsy findings.

These references are old, but still relevant. Cheers.

http://onlinelibrary.wiley.com/doi/10.1002/hep.20518/full

http://www.healio.com/infectious-disease/hepatitis-resource-center-2013/late-relapse-after-svr-may-not-be-new-hcv-infection

Thanks for your reply. I understand your position and have seen a number of viewpoints on the topic. I'm not here to decide what anyone should or shouldn't do. This is an individual decision and I agree that anyone that has experienced a problem, such as advanced fibrosis from Hepatitis C or anything else alcohol related, then the answer is clear, no drinking.

The question still remains and many reports and professional opinions state, that people with no indication of viral activity (SVR) and fibrosis can consume alcoholic beverages in moderation. It's not for me to agree or disagree with their findings, just share them. In the articles I provided and the associated links, there were actually studies provided that used individuals that continued to drink while on treatment, as well as after achieving SVR. The rates of success were interesting. Those drinking on treatment experienced typically half the success rates than those that didn't. But following SVR, those that started again, didn't show a significant difference in relapse rates from those that continued to abstain. Some doctors recommended follow up biopsies for their patients to actually determine their fibrosis level. So the degree of fibrosis can be determined if desired.

I encourage you to read those articles in particular. While many don't want to believe what some data suggests, the numbers present interesting findings. There is no drawn line that will provide set permissions for people to refer to, just educated opinions and research.  I'm not providing these recommendations or opinions to change anyone's position, the medical community at large are. It's going to be a debatable subject considering the nature of the topic. For those that want to know, the information is available and I'm trying to provide resources to answer the questions. The more documentation we (as a group) can provide, simply allows people the information to make an informed choice. Nothing more, nothing less. I encourage people interested to read the data, while it's lengthy and sometimes confusing, it's also informative and will indicate why these doctors came to their conclusions. Those that don't want to drink and have already made this decision, then the need to research it doesn't exist. But the question still remains for some and if I can help them find their own answer, I'm glad to help. Thanks again!

Tig

Hello,  I've been searching for information on the topic we've been discussing, "Alcohol use post SVR". As I researched the subject, things really started to open up into a multi faceted discussion. Seems there are opinions, as well as educated reports by medical professionals on the issue. As you might expect to find, there are comments from both sides. Please note that there are continuing links and source information included on all of these items. I encourage you to continue the research using them, I've found much of it to be very enlightening. So, instead of applying my own opinion to this (surprise!), I think the best approach is to let you read what I've found thus far and let you come to your own conclusions. As a news outlet says, "We (I) report, you decide".... 

 Tig

The impact of lifetime alcohol use on hepatitis C treatment outcomes in privately insured members of an integrated health care plan. (2012)

http://onlinelibrary.wiley.com/doi/10.1002/hep.25755/pdf

 

Sustained Virologic Response to Antiviral Therapy for Chronic Hepatitis C Virus Infection: A Cure and So Much More (2011)

http://cid.oxfordjournals.org/content/52/7/889.full

 

Management of Hepatitis C Virus Infection in Heavy Drinkers

http://alcalc.oxfordjournals.org/content/early/2013/03/20/alcalc.agt020.full

 

Hep C, Alcohol and Pain: Response; Douglas T. Dieterich, M.D.(2004)

http://www.thebody.com/Forums/AIDS/Hepatitis/Q161467.html

http://www.thebody.com/content/art39624.html    (Dr's Bio)

 

Med Help Community Discussion (2004) Even though this is dated, it provides some additional peer responses for those wondering what others have to say. Note the dislike of the name calling. When discussion is requested, it should be delivered without ugly criticism IMO.

http://www.medhelp.org/posts/Hepatitis-C/Drinking--Alcohol-after-SVR/show/89379

(See related discussion links at page bottom)

 

PS: I read in multiple articles and reports that it was (is) recommended that all moderate to heavy alcohol consumers follow an abstinence program for 6 months prior to starting anti viral treatment. I'm curious how many of you were aware of that? My doctor made no mention of that whatsoever. 

 

I have had the occasional glass of wine or two over the years. My doctor said once in awhile that one glass was ok. I did have guilt about it though. Always assumed that I was SVR, that an occasional glass would be alright. I'm beginning to see I may be wrong about that.

I would never do it for months before or during treatment for sure. I can't say whether or not I ever will again. Right now I don't want to, but its difficult to say I never would again. 

This is an eye opening subject. If I were to find out that drinking could bring the hep c back, then I'd never drink for sure. I've never heard that it would though? I'd like to see some studies on it as well.

Tig56 wrote:

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Hi PW,

I sense your irritability and think I understand what fuels it. But please don't be too harsh yourself, we're all warriors here and it's something many are very vehement about. If I may be so bold, I know them all well and the last thing they mean to be are unfriendly and  judgemental. Let's call it passionate concern for their welfare and that of others. We dislike conflict, nor do we encourage it in any form. It's good to get your position out there and I think that many have done just that. Hopefully we can move forward and calm responses will prevail.

With that said, I'd like to encourage anyone to present opposing viewpoints, educated, and calm viewpoints on the subject of SVR and suspected causes following relapse. Like you PW, I found Mallani's statement that SVR simply means undetectable, entirely thought provoking. I've been concerned about the thought that if SVR simply means undetectable, does that actually mean an immune system failure or weakening will result in relapse? All of the recent literature and reports indicate those with SVR 12 have 1% or less chance of relapse overall. But in the article mentioned yesterday by "Oldenslow" stated that with SVR 24 or 48 those numbers in some instances, may increase out to 2.5%. If the recent claims of "cure" aren't completely supported by fact, I'd like to see that fact. If  an immune crisis were to strike us for any reason, should there be some type of rescue drug therapy applied that would improve our odds against relapse? I think that's something we need to know. It's also something I'm unable to find in black and white. Are you aware of such information PW? Can I ask you to help me research it? I'd appreciate any help on this subject. Thanks for all ideas!

Tig

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 Tig,

I took a couple of the responses as hostile and responded in kind, which I shouldn't have done.  Maybe I misunderstood - in any case it's not place place to play thread cop.  I just want people to feel comfortable asking questions.  I'll shut up now. :)

With regard to the relapse rate after SVR, that is interesting and I'll look into it as time permits.  I wonder how well controlled that data so there's nobody included in that number that may have behaved in a way to reinfect themselves (IV drug use)?  I'll see what I can find.

I do have a question for you guys... you all mention stages of cirrhosis .. My doc has never mentioned that to me at all. My VL has always been low and I did have a biopsy in 2005 and the doc just said it looked good. ( he's pretty vague) can you find out that info by your blood test results? I am guessing I've had HCV for about 30 years .. 2005 VL was 459k and 3/2014 it was 673k. 

_________________________________

This is an excellent question and, IMHO, proper staging of liver disease is an important and often overlooked concern for Hep C patients.  We are pretty fortunate to have a forum physician and as he has already indicated there are only 2 stages of cirrhosis: compensated and decompensated.  You would know if you had decompensated cirrhosis but you might not know if you have compensated cirrhosis.   Diagnosing the degree of liver fibrosis is not as easy as it sounds.  

Doctors rely on clinical findings, biochemical markers, and specific liver diagnostic tests including fibrosure, fibroscan, and liver biopsy to stage liver fibrosis. The "gold standard" for diagnosing liver disease in the US has long been considered to be the liver biopsy but since the fibroscan was FDA approved last year the fibroscan may replace the biopsy as the gold standard in the US for staging fibrosis as it has in many European countries.  

We often forget, however, that even liver biopsies have an error rate of 20-30%.  Add to that it has been 9 years since your biopsy and you may not have an accurate idea of your actual liver damage at all.   Knowing the extent of your liver damage is important not only for treatment decisions but also for lifestyle decisions such as diet, alcohol consumption, exercise levels, etc.   

Also consider that your liver can actually get worse with some treatment drugs.  We are often told that tx  will give our livers "a break" but unfortunately this is not always the case.  

I went from stage 2/grade 2 at the beginning of my triple therapy with Incivek to early cirrhosis 6 months post- treatment.  More likely than not this rapid progression in fibrosis was caused by the treatment meds, but this could have been a pre-treatment staging error, or even an unusually fast progression due to my own physiological and genetic make-up.   

For me, my Hep C diagnosis alone, was enough to ensure that I exclude alcohol from my life but I appreciate that this is a personal choice.   It actually wasn't a big sacrifice since I seldom drank before.  Being super cautious I have also stopped cooking with liquor.  That has been a bit of a sacrifice as my Marinara and Mushroom sauces have never quite recovered from the shock.

I strongly encourage you to find out as much about the state of your liver as you can.  Fibroscan is still a little hard to get in the US (because the machines are pricey and not to many docs have them) but they are super easy, very reliable, and relatively inexpensive.  I had mine in Canada prior to US approval; it cost about $400. out of pocket, plus the trip to Vancouver, which was pretty fun.   Insurance might cover them in the US now but I'm sure it depends on your policy.   Best regards.  

 

 

 

 

Hi PW,

I sense your irritability and think I understand what fuels it. But please don't be too harsh yourself, we're all warriors here and it's something many are very vehement about. If I may be so bold, I know them all well and the last thing they mean to be are unfriendly and  judgemental. Let's call it passionate concern for their welfare and that of others. We dislike conflict, nor do we encourage it in any form. It's good to get your position out there and I think that many have done just that. Hopefully we can move forward and calm responses will prevail.

With that said, I'd like to encourage anyone to present opposing viewpoints, educated, and calm viewpoints on the subject of SVR and suspected causes following relapse. Like you PW, I found Mallani's statement that SVR simply means undetectable, entirely thought provoking. I've been concerned about the thought that if SVR simply means undetectable, does that actually mean an immune system failure or weakening will result in relapse? All of the recent literature and reports indicate those with SVR 12 have 1% or less chance of relapse overall. But in the article mentioned yesterday by "Oldenslow" stated that with SVR 24 or 48 those numbers in some instances, may increase out to 2.5%. If the recent claims of "cure" aren't completely supported by fact, I'd like to see that fact. If  an immune crisis were to strike us for any reason, should there be some type of rescue drug therapy applied that would improve our odds against relapse? I think that's something we need to know. It's also something I'm unable to find in black and white. Are you aware of such information PW? Can I ask you to help me research it? I'd appreciate any help on this subject. Thanks for all ideas!

Tig

JIme wrote:

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This question always baffles me. I have been cured of a life threatening disease but I want to know if I can do something that might make it come back?

It reminds me of the guy who relapsed after smoking weed while on tx. And he argued that it was ok.  Ya think he might want to do tx again without smoking weed? I think he might.

But hey, whatever blows your dress up, as they say. Good luck! 

 

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 Nobody asked if they could do something that may make it come back.  They asked if it would make it come back.  Let's not be harsh and judgmental to people asking a perfectly understandable question.  I think we're all better off being open to questions and discussion than jumping down people's throats at the slightest hint of nonconformity.  Nobody learns anything if people are afraid to ask questions.

I quit drinking several years before my HCV was detected, so making the 'no-alcohol' lifestyle transition was a non-issue. Every once in a while I think about using a central nervous system depressant like alcohol to alleviate my muscle stiffness, but the risk(however unknown) far outweighs any short term benefits, in my mind.

mallani wrote:

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Hi PW,

The virus is not cleared, it's 'Undetectable'. It persists for an unknown number of years. I, for one, will not take anything that's toxic to the liver. If 'quality of life' requires 'a couple of drinks', go for it. Sorry to be judgmental- I treasure my SVR. Cheers.

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 Thanks for explaining.  That's important information I wasn't aware of.  It's a little disappointing but compared with the illness it's a small thing.

mallani wrote:

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Whether to have a 'couple of drinks to loosen up ' is a question that makes me wonder why so much sufffering, time and money has been spent to control this disease.

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 Hi Mallani.  I've been learning quite a bit reading your posts as you seem very knowledgeable.  I'm going have to call you out on this statement though as it comes across as a bit judgmental and without any explanation.  This is a quality of life issue for some people, me included.  Quality of life is what we are all after here.  There's no harm in asking.  Nobody wants to get sick again so if there are actual risks then of course it should be avoided, but would you mind elaborating on what you feel the risks are if the virus is cleared and fibrosis stage is low?  I'm not saying you aren't right...I'd just like to understand the reasoning.

Hi Nadine,

There are only two stages of cirrhosis- compensated and decompensated. A compensated cirrhotic can live for many years with no clinical problems. The biochemical markers are platelet count, serum bilirubin, albumin and ALP and prothrombin time (or INR).

Whether to have a 'couple of drinks to loosen up ' is a question that makes me wonder why so much sufffering, time and money has been spent to control this disease.

Of course the standard response to this is "check with your doctor", but if you want speculation from a non-expert... As others have mentioned here as well, my opinion is it will depend on the condition your liver is in more than anything. If you're stage 4 at the end of treatment you might not ever want to drink again (I don't know). If you're stage 1 then maybe you can...your doc should be the one to give you the green light. One thing you don't have to worry about any more is the issue of alcohol speeding up viral replication, since the virus is gone.

My hopes are that I will be able to enjoy the *occasional* (i.e. maybe once or twice a month) social gathering with alcohol, but I won't without my doc's blessing. I have a highly respected doctor and he's told me in the past (when all my indicators were better than now) that once in a blue moon, like going to a wedding or something, is ok....but don't even think about regular consumption. That was advice for a patient that still has the virus, but with low fibrosis and good overall indicators.

This is one of those questions with a grey area because obviously the best thing is to never drink at all if you only look at it from the HCV perspective. But this is a quality of life issue more for some than others. It is a big one for me as it's had a major impact on my social life. I've always been a little shy and introverted and depended on a little alcohol to grease the wheels at social events. Without it I often just don't even want to go. For me no alcohol is a bigger sacrifice I think than for someone who is an extrovert and just has fun regardless.

Also I've never in my life had any issue where I wanted daily intake of alcohol or anything else, but some people do have this problem which is another thing to consider. For alcoholics having a couple drinks on Friday may open the flood gates and if they have HCV that would be a disaster (I'm not suggesting you are an alcoholic...just speaking generally).

Long story short I think the answer to your question depends on the circumstances of each individual. That's my unprofessional, highly conditional, non-answer to your question. :)

Hi Dee Dee, that`s a good question and I`m glad you asked!  The subject has been discussed at length here on the forum in the past and can be quite a contentious issue for some, and it`s always worth bringing up again.

Basically, the usual advice is that once you`ve had hep C you should continue to avoid alcohol completely even after achieving SVR.  That`s especially so for anyone who has cirrhosis of course, but also any degree of fibrosis will only be aggravated by drink, and we all want to do what we can to help get our livers back to optimal health post treatment.

The other reason is that the PCR viral load tests currently available cannot detect quantities of virus below a certain number, and so even though SVR is considered to be equivalent to a `cure` there could theoretically still be very small amounts of the virus still present, but at such low numbers that our immune systems are keeping it under control.  It`s extremely rare for the virus to become quantifiably active again post SVR but the general view is that it`s best not to give our livers the added burden of having to process such a toxic substance as alcohol.

At the end of the day this is something we all have to weigh up and make our own decisions about, although a lot of people feel that after going through tx and achieving the prize of SVR the risk just isn`t worth taking! 

Hey Dee Dee

After having HCV for a number of years your liver has been damage or compromised, if you achieve SVR it will takes years before your liver will heal itself if it can possible do so.

Drinking even moderately will stop any healing and continued drinking will damage you liver even more. Your liver is working with less capacity to deal with toxics and alcohol takes a completely healthy liver to filter it out.

So No! No!! No!

matt