Alcohol Pre Treatment

[irishrayne]

I went for my pre treatment psych eval earlier this week. Found out that the docs don't want to start treatment unless the patient has been alcohol free for at LEAST six months prior. I was SO disappointed as I was hoping to begin tx ASAP.
I enjoy a glass of red wine with dinner. I knew NO alcohol during treatment and had planned to not drink for several weeks prior to.
Now I may be delayed into the new year befor I can start tx.
I just wanted to share with those of you who haven't started tx yet so that something like this doesn't hold you up as well.

[Forseegood]

I take most of your post, good post! I just think the generalized things can cut both ways, as to saying how much a person can drink, etc etc...go ahead and drink 7 drinks a week while you have hepatitis, I do have a problem with that...because not all people could do that...and I'm not just talking about alcholics...and I think Cuteus said she only drank 2 drinks her whole treatment, if I remember right...maybe I'm wrong...

Probably most people wouldn't have a problem with that...in the end, doctors can tell us their points of view on this, but it's up to us as individuals, adults, to make our own desicions about this, and I totally respect your decisions on what you wanted to do, and your candor and honesty...I guess I just have a problem with people who say we *all* can do this or that...because we are all different...

and I'm just one of these people who want to err on the side of caution, but I don't really know how much one thing will effect any one individual, there are too many variables, science isn't that sophisticated yet to make those kind of predictions...to me...

And I'm very glad you went ahead and treated even though you smoked, or you wouldn't have been SVR now...anyway, that's my ending post...I'm beginning to bore myself, which so often happens with this subject...anyway, be well and I hope you have a great visit and vacation!

[Tater_ToT]

I usually stay the heck away from these threads, because they become redundant... but Haa, Haa.... ya'll brought out my addiction... Smoking UGG...

So Tater has to be honest even if nobody does or will appreciate it!

First of all... YUP... I hear tell that Ciggys are the worst addiction... I have even had previous addicts in here tell me that drugs, & alcohol were easier to give up than ciggys... being as I haven't had any prior addictions... I wouldn't know...

I just know it SUX, & I hate it myself... but I gave up trying to give up to avoid further disappointment in myself... & I dare NOT even try right now with my weight problemos...

I Know, I Know... excuses, excusses... I have a million of em!

BUT... to be honest... I was told NOT to worry about trying to quit on TX, & told that the stress of TX alone was enough without throwing something else in there to contend with!

Remember Success Rate Is Important!... If I'd of had to wait till I quit.. then I guess I wouldn't have treated... Just like I have some oral surgery needing to be done... but the doc wouldn't do it till I stopped smoking for 6 months because smoking affects the bone growth & mending!

Okay but the world (Even the TX World is NOT so Black & White) nothing is cut & Dry!

First of all there is a BIG Difference between alcohol USE & ABUSE!

Also you have to throw in the factor of the extent of Liver Damage... ect... ect!!!!

Okay we all KNOW that the Drinking Alcohol is Like a Miracle Grow to the virus theory is total BS.....

Example... when I relapsed... my VL went up to 6 some odd thousand... & the Alt's & Ast's Had SKY-ROCKETED... more than Quadrupled.... So the virus came back with a vengeance.. & my liver was working over time!!

I knew I was gonna treat again... So during my down time between rounds, I DRANK.... & even drank the night before having my blood work done the next day... & my VL had reduced on it's OWN to barely over 1000... & even my ALTs and AST's where back within the normal range!

So EXPLAIN THAT??? The Sky Rocket effect was PRIOR to ANY Alcohol Consumption......If it caused the virus to replicate... surely after partaking in the evil grape...everything would have gone in the other direction.... but it didn't!

The problem I see here, is that there are many folks that Can't drink...( even in moderation)... we have struggling alcoholics, & people in ESLD, who are not afforded that Luxery... some even have to use special mouth washes that contain no alcohol......but just because some can't ....doesn't mean that applies to everyone....

It's all an equation & it has to be individualized... just like with anything else pertaining to our TX!

We USED to (before folks finally started getting civil).. we used to have those that would come in here & use SCARE Tactics on newbies... almost to the point they they left more of an impression of being bitter because they themselves COULDN'T drink....& that is so unfair!!!

I seen folks swear that 1 drink was gonna cause someone to relapse... or doom there TX....we even had a person say that one drink made a friend of a friend relapse YEARS Later...LoL

This is ridiculous!

Yes we have had folks in here that have obtained SVR & Drank Moderately (Even while treating) & I hope to be & appear to be one of them.. Cutie was one, Ringer was another... we have had plenty.. & probably a LOT more would come forward & be honest IF this subject weren't always treated in such a hostile way... people walk on this like EGGSHELLS... & that doesn't seem fair either!!!

I think IDUVIDUALIZATION... & Extent of Liver Damage... & defining the difference between ABUSE & USE are Key Factors!!!!

What might be excessive to one... would NOT be excessive to another...

Maybe some docs are just hardcore... because NOT Knowing, want to give the best possible success rates, You have to have a Dr that you can be HONEST with & NOT Fear being Judged!

I have little to NO significant Liver Damage.. & treatment was optional... but newer drugs were NOT around the corner at the time... & Surely having had this Virus for 23 years Prior to diagnosis.... had I of been an alcoholic... then I'd been dead by now, or would have at least had some kind of significant liver damage from all those previous years that I might not have been so moderate.. ehh..???

My Theory is... Moderation is the key to ANYTHING in Life!

Oh well...hope I don't start WW3.... & I know many don't want to hear it...but it's the TRUTH!

Also In a seperate note I would say that I would NEVER encourage nor condone it! It's just important to be FACTUAL, & Thorough... otherwise we are like an ostriche with our heads stuck in the sand!
:)

[Forseegood]

Fingers and toes crossed for you, you sound like such a strong woman, you'll get through this, look what you've done already, as silly as it sounds, take deep breaths, and hope youre next to an air conditioner! hot huh?...please let us know...like Child always says..."big, big hugs"....

[Forseegood]

hey good post, lots of points that I agree with anyway, if that means anything, lol...one thing I wanted to point up as well...and I won't do my typical windbag...no one hates smoking more then I do, and no one thinks it's more "unhealthy" more then I do (course, I've never smoked ciggys, cept some pot in my youth, so I can't relate to the addiction, and I've heard it's the worst addiction of all, so I do have compassion for those addicted to smokes)...and I do think it might have negative consquences on this disease, as well as it's treatments, course these are subjects beyond my ken, and most peoples...

One should stop smoking before treating if at all possible, my esteemed opinion, ha ha! It's just common sense....But for the people who find that they just can't stop smoking, many have gone ahead and just treated while smoking ciggys...and some have SVRed! NYgirl and a few others come to mind on this board, and I know a few on some other boards...Before I get any letters, this is not to say that I'm advocating smoking while treating, just bringing up some points...

But how many can say they've gone ahead and SVRed while drinking alcohol? all the way through? Anything's possible in this "man's universe" but I don't think the numbers are very high...ciggy's don't alter "mood" as much as alcohol does, if fact, alcohol alters mood in some people substantially (a sub-group, to be sure, as you pointed out) and I should think that altering mood in this way would have some more substantial consequences then ciggy's - in being able to withstand the onslaught of treatment...just my view, this just makes sense to me....

[cajunlady]

Thank you for your concern.  I am now finding out that this so called fibrocyst for the last six years is not that at all.  It is a solid mass.  Very encouraging huh.  I have high breast cancer in my family (maternal), so am a little concerned.  I go in tomorrow for biopsy.  I will let you know the results.

I should be getting my orders for 6 month post PCR and CBC's.  Hope to see it in the mailbox today.  I will try and have the labs drawn this weekend.  I have put a post pcr off while dealing with my hubby. (He is doing great right now, still gets tired, but okay with all else).   Now I will have double nerves waiting for the results of biopsy and 6 month post pcr at the same time. YIKES!!!!!!!!

How are you doing, hope all is going well for you.  I only post sparatically so, I don't catch everything that is posted.  There are alot of new people and a whole lot of threads being opened it is getting really hard and time consuming to seach all there is.

Well at work right now and need to finish loose ends up before I leave today.  Have to be sure things run around here, even when I am not in the office.

Cajun

[mremeet]

Howdy sonic, it's really great to have another doctor aboard, thank you so much for your invaluable input. There's a buffet-o-sick people around here who need help and advice concerning hepatitis, and it's extremely kind and considerate of you to offer your help and advice. You can never know how much you're appreciated. We had another MD here named "hepatitis researcher" (also called "HR") that we had some fantastically informative research conversations with (many of which were over my head, but I enjoyed them nonetheless). But haven't seen him around in quite awhile, I think we finally drove him off with our relentless Q&A's lol.  Sure would be great to see him again and have both of you practicing MD's discuss the various hepatitis theories, treatment strategies and drugs under development.

Let me try and respond to some of the points in your post:

"I'd also take issue with categorising "If you're a very moderate drinker (i.e. 1-2 drinks a week)" as MODERATE alcohol consumption. I have patients who spill more than that, daily."

Yes, I think we're in agreement there. As stated in my post, I would consider 1-2 drinks a week as "very moderate" drinking (having essentially a negligible impact on someone with non-fulminant hepatitis). I wouldn't consider 1-2 drinks a week as "moderate" as you seem to have interpreted me as saying above; I agree that's a small and relatively harmless alcohol intake, even for a "standard" chronic hep C patient without cirrhosis. In my opinion, "moderate" consumption would be defined as approx 3-7 drinks a week for someone who wasn't extraordinarily petite. As far as irish is concerned, she doesn't fully clarify, but she mentions 1-2 drinks at dinner. If "dinner" is served everyday (as it is for many people), that could equate to as much as 14 drinks a week (feel free to clarify if this is incorrect irish). In my opinion, 14 drinks a week is just too much for a hep C patient to be consuming, especially if irish is a slip of a girl or is otherwise a relatively small statured person. I would consider 14 drinks a week for a chronically infected HCV patient as moderately excessive alcohol intake. I realize drawing the line between moderate and excessive may be a bit like counting how many angels can fit on the head of a pin, but there you have it.

"Now I'm NOT advocating regular alcohol intake, and personally don't drink at all, but the reality is many people do take and enjoy alcohol regularly and responsibly, and doing so, in my view should not disqualify them from getting proper treatment for a potentially serious disease."

I agree completely, drinking alcohol either minimally, moderately or even excessively should not outright exclude the availability of proper treatment for hepatitis C. I realize what you're saying in that respect and I agree completely. People are soft, squishy, imperfect beings who have flaws, foibles and personal problems (including addictions and emotional disturbances) that cause them to do all sorts of things that are often not in their own best interest healthwise. But that doesn't mean they should be denied healthcare, and doctors should be accepting of the reality concerning how many of their patients live their lives and still do their best to get them cured. If that's what your basic sentiment is (which I suspect it is), I couldn't agree more.  

My only point to irish above concerning abstinence well prior to starting treatment (and during treatment) was from the perspective of a patient with hep C preparing to do battle with the virus. I'll try and explain in more detail what I mean by that: Speaking for myself as a patient with a long term chronic hep C infection who's researched the various ins and outs concerning treatment and the various factors that "may" influence treatment outcome and success, I've come to believe it's *critical* to do everything within your power as a patient to align the planets as best you can prior to starting your treatment. I especially think this is important if you fall into one of the tougher to treat categories. For instance, if you have geno1, high VL, advanced fibrosis, high BMI, older age (40+) etc etc, then as I'm sure you're aware, the odds of being successful going into an SOC course of treatment aren't exactly overwhelmingly favorable (and if I'm not mistaken irish fits a few of these criteria).

And so considering the mediocre odds of success going into geno1 SOC treatment, I think as proactive and reasonably well informed patients we'd be well advised to aggressively seek out any and all possible courses of action that might enhance those paltry odds (even if only by a small amount). Here's just a few I've identified that could have significant impact on treatment outcome that are within the power of the patient to manipulate and influence to their benefit:

1. Understanding that increasing riba and/or IFN (especially early in treatment) beyond "standard" weight based doses and/or increasing duration of treatment beyond the standard 24 or 48 weeks, can make a huge difference in treatment outcome. But it comes with risks and must be managed aggressively and effectively by a doctor that is willing to work with you and knows how to deal with plummeting HGB and ANC's via rescue drugs and understands that ANC's can safely go considerably lower (in most otherwise "normal/healthy" patients) than what the standard pegIFN labeling dictates. The doctor also knows that rapidly dropping HGB needs to be remedied quickly and in advance using procrit etc (considering epo's lagged response) in order to preclude a riba reduction (especially in the critically important early phase of treatment). I've come to realize as a patient, that having a doctor who knows these things and is willing to work aggressively and proactively with you to keep IFN/riba doses up (especially during the first 12-24 weeks), can have a tremendous impact on increasing your odds of success (i.e. SVR). As an experienced hepatologist, I'm sure you already know all of this. It's just we've seen so many stories from so many patients who come in and tell tales of doctors who are inexperienced with hep C treatment, or are just plain lacklustre in their skillsets and don't know how to effectively manage anemia/neutropenia, especially during the critically important early phase of treatment. They invariably seem to get caught flat footed as soon as HGB and/or ANC's start to drop, and then just rotely follow the drug inserts by simply lowering meds in response to these problems - which can unnecessarily really put the kibosh on likely treatment success.

2. VL monitoring should be tracked more frequently than it normally is, and the patient should ensure their doctor is willing to go along with this and understands its importance (which in many cases they don't). I'd want to have VL testing at weeks 2, 4, 6, 8 and 12 (for starters), especially if I was engaging in "off label" higher dosage strategies. If the strategy didn't seem to be working as hoped (with the optimum objective of going UND by week 4), then depending on the situation, either cutting your losses and quitting early (thereby minimizing exposure to these risky drugs), or conversely with excellent performance possibly abbreviating planned treatment duration and/or reducing meds to more "normal" (and more tolerable) levels would be a real option that you could exercise with the knowledge the additional VL test results provide.

3. A patient should get themselves in as good a shape as possible well prior to starting treatment by eating right, abstaining from vice if at all possible (cigarettes, drugs, alcohol etc) and exercising vigorously. A stronger mind and body going into treatment will be much more able to tolerate side effects, avoid dose reductions and endure a longer course of treatment (all of which maximize odds of treatment success). I'm an avid mountain biker, and went into my treatment with an HGB of 17, which may have helped me avoid an anemia based riba reduction (my HGB never dropped below 10.5). Over the years I've clearly seen my HGB read higher when I'm vigorously exercising, and lower when I'm in couch potato mode. So I think going into treatrment with a 7 point HGB headroom helped me and would help anyone preparing for treatment.

4. Getting back to alcohol use and it's impact on hep C patients - While it's true (to my knowledge) that minimal to moderate alcohol use has not been shown to markedly increase viral loads, that doesn't mean that it might not do just that to some people. Virologically speaking, not everyone reacts the same way to IFN and riba and not everyone reacts the same way to alcohol physiologically. As you probably know, there are several studies that have found that alcohol does have a cause and effect relationship between viral loads and alcohol intake. I've recently seen some newer studies (fewer in number) that suggest there may not be a correlation between alcohol intake and increased VL. So it's a bit cloudy exactly what role alcohol is playing here. But from my experience these types of vague and not perfectly clear study results are typical of what you'll find as a hepC patient trying to get an upper hand on how to manage their disease. There aren't any easy answers and you're so often confronted with data and studies that are vague, or merely suggestive, or even offer inconsistent or contradicting results. This can be very frustrating for a hepC patient, as it probably is for doctors and researchers as well.

But we have to make the best with what we have and apply as much "horse sense" to what we have when deciding to accept or reject study results that are ambiguous. In the specific case of alcohol consumption, to me it's a simple matter. Even moderate alcohol consumption may very well serve to increase viral loads. And going into SOC treatment with a higher VL than necessary would be a mistake. I certainly can't prove moderate alcohol consumption does this conclusively, but there is a reasonable body of evidence spanning several years now that suggests it may do this in some HCV+ people. Plus, just "intuitively", you would think that drinking alcohol in any appreciable amount (even if not excessively) just wouldn't do anything good for someone with a chronic case of hep C. Moderate alcohol consumption may or may not have a significant effect on VL in some people, it may turn out to be benign and insignificant. But it certainly isn't helpful, I think most would agree with that. Therefore, given a choice, I would think it prudent to err on the safe side and avoid alcohol altogether well prior to starting treatment because it may raise my viral load to a level significantly higher than it would be if I abstained completely. I don't know that for an absolute fact, but it could be true. And what's the downside if it turns out not to matter? Well...there isn't a downside. The only downside is that I'm temporarily deprived of the relaxing and tasty allure of alcoholic beverages (and I do appreciate them as a former homebrewer, I can assure you). But since I'm not an alcoholic and "can quit anytime I want", it's not a problem (it's merely an inconvenience). So considering (a) I can quit anytime I want, with (b) the gravity of the situation at hand when viewed within full context (i.e. as a patient with a life threatening illness preparing to treat with dangerous drugs for an entire year with crappy odds of success) - then why wouldn't I just cool it for a year and half?? (i.e. 6 months prior + 48 weeks)  Seems sensible to me, and I would confidently provide the same advice to anyone preparing to treat.

As a brief aside, speaking for myself I also incorporated the findings of another semi-supported study into my own healthcare during my treatment (I'm in Vertex prove 1 study, btw). There have been a few recent studies you're probably aware of showing a rather dramatic increase in viral response and subsequent SVR performance with patients who went into treatment with high LDL levels. They also seemed to have a reasonably logical explanation of how a high LDL level might interfere with the virus' ability to latch on to the host cell (as best as I could understand it anyway). Is this study the end all be all? Does it prove conclusively that eating greasy burgers and lard sandwiches will make me much more likely to get an SVR?? Of course not, but it is suggestive and seems to have some premise in reality (with some good data to back it up). This is another example of incorporating fragmented and inconclusive data into your healthcare (in regards to HCV treatment, NOT arteriosclerosis! ;-) with the hope that it might end up having a valid premise and therefore serve your interests during treatment (I ate pizza, ice cream and potato chips galore prior to and during my treatment, incidentally).

Anyway, sorry to drone on as I have! Nice chatting with you, great to have another MD onboard.