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.
I'm sorry that you have to wait. Can you get another doctor?
When I went for treatment I was asked how much I drank per week. I can't remember actually how much I said, but it wasn't an issue, they treated me. However, I have one friend who had to be alchol free for 6 months. It depends on who is treating you it seems.
If it were me I would get another opinion if you are able to.
What nonsense! Sure, its BETTER if you aren't drinking and I certainly advise my patients not to drink more than 7 standard drinks per week (in fact, alcohol consumption at that level or lower is a prerequisite for funding therapy in Aus), but there is little evidence to suggest low level social alcohol consumption of this sort impairs your response to treatment in any measurable way or accelerates your liver disease (assuming you don't have an alcohol PROBLEM or alcohol related liver disease to start with. We are supposed to practice "evidence based medicine" and I would LOVE to see any evidence that getting people to be completely abstinent for 6 months prior to treating HCV with IFN/Riba makes any difference to outcome (other than the fact you unnecessarily delay therapy)
It is also not realistic. If I insisted on this, I'd wind up treating about 25% of the patients I have. The Puritans have a LOT to answer for. Several patients I currently treat also tell me that 1-2 glasses of wine (on the nights they inject, only) actually makes the side effects more tolerable.
I have heard that some doctors have the 6 month no alcohol rule but mine didn't mention it. IF somebody is only a casual drinker ie-has a glass of wine with dinner every now and then- how would the doctor know they have been drinking? Surely, they could pick out the alcoholics from simple blood tests.
I think the rule is totally understandable when dealing with alcoholics.
Alcohol consumption has been shown to increase viral loads in those infected with HCV. I don't recall offhand what threshold of alcohol consumption would start making the biggest difference in increasing VL, but I'm doubtful a very moderate alcohol intake (like 1-2 glasses of wine a week) would do much to increase your viral load.
I'm guessing the reason they want complete abstinence for 6 months prior to tx is for two reasons: (1) To ensure you're capable of abstaining and controlling any possible addiction you might have. Abstinence will help you adhere to your treatment protocol and thereby help to improve odds of treatment success. Alcohol consumption during treatment will further tax your already taxed body and mind, making you less likely to comply with and complete treatment - thereby lowering your odds of treatment success. It can also greatly complicate the management of your emotional side effects. Anti-D's and sleeping meds are common meds used for the management of sides. Generally you don't want to be mixing White Zinfidel with Paxil, ambiem, Tylenol, benadryl, interferon and ribavirin just to name a few.
And (2) to keep your pre-tx starting VL as low as possible. Eliminating alcohol consumption well before starting tx will help to get your viral load down and "re-equilibriated" as low as you can get it prior to starting treatment. Studies have repeatedly shown that those who start off with lower viral loads tend to respond more favorably to the treatment drugs. Those who start out with lower viral loads are more likely to go UND earlier and are generally more likely to get their SVR after completing their treatment. Anecdotally I've seen people report very significant reductions in their VL after stopping alcohol.
So while it's a bit of a mixed bag, in this layman's opinion it's probably best to just stop alcohol altogether well prior to starting treatment. If you're a very moderate drinker (i.e. 1-2 drinks a week), I'd just go 3 months without any alcohol prior to starting tx. I'd also use that time to get into shape - eat right and exercise plenty to strengthen yourself in preparation for your battle. If it's real hard (or impossible) for you to stop drinking, then I'd suggest trying getting the help required to get the alcoholism under control. SOC treatment can be a real tough fight for someone without any addictive monkeys on their backs. Treating while suffering from unmanaged alcoholism is setting the stage for failure, and one hell of a miserable experience. My $0.02 anyway, best of luck.
Most alcoholic still in denial will tell you they're only casual drinkers. Most in recovery will jokingly tell you that they casually drank, just that they casually drank when they were happy, casually drank when they were sad, or casually drank when they were neither happy or sad.
Most doctors can discern the occasional drinker from those who casually drink.
I am treating with Dr Fried's group here in the US.
I told them I am completely a casual drinker ( 1-2 glasses of wine at dinner) the 4 oz glasses not the GOBLETS! lol
I am geno 1-a
grade 1 inflammation
Actually, some hepatologists I know (and who have published on this contentious subject area) will treat HCV in people actively detoxing from heroin on maintenance methadone. I have issues with that but their stance (and I can't argue with it) is that many of these people will get off drugs but if you wait for that to occur before treating them you may delay therapy too long. Tough area to work in.
Sure, high levels of alcohol consumption will increase (to a minor degree, not by the 2-3 logs IFN/riba causes it to fall by) viral load in some people, but modest (1-7 units / week) have never been shown to impair responses to therapy.
As far as I am aware my friend who was an addict was told no alcohol or drugs prior one yaer to TRANSPLANT because they didn't want to waste a perfectly good liver (of course he went right back out there anyway and later died) but I've NEVER heard of not drinking ANYTHING prior to treatment.
I was honest with my doc and admitted I am a sober alcoholic/addict. He didn't really ask me anything more at all. He told me after treament if I had two glasses of wine a YEAR that would be the utmost that would possibly be allowed.
Told him not to worry I didn't drink anymore anyway (although I sure do want to in the summertime sometimes!).
He said my liver was already severely damaged (stage 3) and from now on NO ALCOHOL was the policy I had to follow.
But - he did not in any way question me as to drinking PRIOR to treatment.
Just about EVERYONE has a glass of wine or two a week prior to treatment in the real world. I can't imagine why a doctor would think a person wouldn't?
Find another doctor. That's all. Make sure you get a copy of all your records and go.
I've never heard of anything like this before really.
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. 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.
Incidentally, there is also the persistent paradox, demontrated in many countries in well conducted surveys, notably in the UK (but also in the US and Europe), that if you totalled up the amount people ADMIT to drinking you could only ever account for about HALF the alcohol consumed nationally.
I've heard that said before; it makes me wonder, though---I was always totally honest about the amount of alcohol I admitted I consumed; health care workers REALLY must have thought I was a lush!!! (Ohhh----2-3 bottles of beer a day, followed by 1-2 bottles (not glasses) of wine---red wine...!!) LOL
I personally know a man very well who received a liver transplant 3 days before I did while he was on methadone for prior heroin addiction. After transplant he treated with Pegasys/Ribavirin and achieved SVR. He was genotype 2. He is still on methadone and still undetectable. At my center he isn't the only methadone user who got a liver. I don't think it's a big deal - the MELD score, body size and blood types make up the big deal. Of course, an alcoholic needs to be sober/totally abstinent for 6 months before he/she will be even be evaluated for liver transplantation. Mike
Thanks for clearing things up a bit. Always wonder why my doctor told me I could go on with a normal life after I have cleared 6 months post. I had little to no damage w/biopsy and mild inflamation. He asked how much I drank before starting tx, I go to about 5-6 house parties a year. No bar hopping, no gatherings every weekend etc. He never asked me not to drink before I started, but advised not to drink during tx.
I am glad you clarified these things here, there are alot of issues with this subject and on some peoples part rightfully so. Most people with serious alcohol problems cannot ever, ever social drink again and they see things in a very different light than a social drinker does and vise versa.
Have a Great Day, and keep the straight up info. coming.
I was waiting for you to post so I can correct. It is a new email for me, it is
***@****. Leave the last four letter off the beginning. Sorry, I checked with my husband and he corrected me. Hubby is doing really, really good for just 2 weeks post of his stem cell transfusion. Counts were so high he stunned the med. staff at UCLA. What it takes people three months to get their counts back up that high, it only took my hubby one week. He still gets very tired easily and has to nap during the day. We will see in 6 months if it took care of this Hodgkins once and for all, with a pet scan.
Did you go to your doctor yet. If so, how did it turn out. Let me know.
I went Monday to try and asperate the so called cyst in my rt breast, well there is no fluid and it is a solid mass. I go for a biopsy on Friday morning. He will take the mass completely out for biopsy since I have high risk breast cancer in my immediate family (maternal). Then we will take it from there.
My hep doc mailed out my orders for me to get my 6 month post PCR. I should get it tomorrow. I will try and have the labs done this weekend; if I am lucky I will have them to go on Friday when I do my biopsy and have them drawn then. Nervous, but time to see if tx worked for me.
Amen. Amen. My docs allowed me to drink in moderation both pre-tx and post treatment. In fact, my current liver specialist wants me to drink 5-7 glasses of wine per week to try and raise my HDL cholesterol.
Irish, I don't know your stats, but if you really want to treat, the amount of alcohol consumption you mention should not be a barrier.
We've rehashed this in the past and a recent study shows no accelerated viral replications from alcohol, plus a recent study suggests that the warnings about alcohol consumption in terms of fibrotic progression only apply to *heavy* drinkers. http://www.clevelandclinicmeded.com/hcv/litreview1.htm (scoll down to commentary)
I have mentioned before that I drink an occasional glass of wine or two with dinner. For the last 6 or 7 months I have been getting labs every two weeks. My numbers have consistently been very good and they're getting better. I got lab results from yesterday's draw: ALT 14 & AST 21 & GGT 13. I am beginning to wonder if wine in moderation doesn't improve my liver function - as well as my blood sugar. Mike
Very interesting. I've also been told that certain studies showed an increase in viremia with even small amounts of alcohol. Sorry I can't name the studies, it was something my Internist told me however 2 doctors told me I - 2 drinks a week wouldn't harm me, one doc said 1-2 drinks a month was acceptable. This pertained to pre-treatment consumption. My Internist also said when asking a patient the number of alcohol beverages they consume in a given amount of time that they, the docs, automatically multiply that number times 2 figuring very few people honestly report their actual consumption!
Excellent numbers and actually almost exactly what my labs show. As to moderate wine consumption improving liver function, I wouldn't venture a guess but since alcohol is a vasodilator, it may indeed nourish the liver if taken in non-toxic amounts*. As stated, my doc wants me to have the glass of wine for benefits to my heart which study after study shows.
*Disclaimer: Pure conjecture for discussional purposes with Mr. Simon from a non-doctor and not a theory of mine nor a suggestion for anyone to drink, blah, blah, blah.
Forsee: I've gotten thrashed more then once on these issues, ha
But I always thought you were the thrasher, not the thrashee. LOL. But seriously, nice to have a civil discussion on this issue. And yes, not all docs agree, and I believer Sonic has stated that.
Of course, youre welcome to your own opinions, but I just wanted to point out, that my doc (and many others) do disagree with your point that people with hepatitis C can drink a few beers or drinks *per night*...(even though they are not alcoholic) I guess he just thinks the fact that we have Hep C changes the landscape for us...
He feels that once we are diagnosed with this, we should give up drinking entirely (cept maybe the very occasional celebratory drink, he told me a glass of champagne on New Years and My Birthday to be precise, but to err on the side of caution, and wait till SVR for any routine drinking.....and I am glad you so politely agreed to disagree with me, on those few points (I've gotten thrashed more then once on these issues, ha ha)...btw...jealous you live in Australia, wonderful place...to get off this tiresome subject - ever see an Austrailian film, *The Proposition* with Guy Pearce? Brilliant...ooops, sorry, wrong side of the forum:)
Thanks for that, all.
However, I don't wish to present myself as authoritative in any sense; as we all know argument from "authority" is a logical arrogance we could well do without. My opinions are just that and carry no more weight and is no more valid than the next punter.
However, I do wish a little more science would be brought to bear on this issue, and a more evidence-based approach would emerge. On this basis alone I see no reason for people (and their families, I might add; I have seen lots of folk whos immediate response, prompted by a well-meaning but misguided family Doc or relative, to a diagnosis of HCV is to dump all the alcohol in their house, to no longer take communion or drink at Christmas or whatever overreaction) to be made to feel guilty or to delay important treatment just because they drink occasional alcohol. Incidentally, I see this as QUITE different from smoking; there is a safe level of alcohol consumption for most people, there is NO safe level of cigarrete smoking for either the individual or those around him/her.
Keep up the stimulating posts, all.
Cheers (with a non-alcoholic beverage)
perspective is always interesting, funny, how it can feel like a thrashing sometimes, just because youre disagreed with, I try not to go there or what's the point of a discussion board?...
I saw an interesting thread here the other day on the new movie Sicko by Michael Moore (with his own perspectives, to be sure)...with one side saying the other had an *agenda*...so much of the time, the other side of the argument has the *agenda* - argumentation is interesting in all it's facets, till it ain't, ha ha ha! I saw on another thread that youre finally doing better...really glad of that....remember, we do agree on loads of things, just not all of them...
Sonic: I see this as QUITE different from smoking; there is a safe level of alcohol consumption for most people, there is NO safe level of cigarrete smoking ...
What about kick-scootering before and after treatment? http://www.xootr.com/xootr/images/scooters/roma-composite-1200.jpg
After taking up the sport, some here have called me reckless, others have called me a ten year old, and a friend at the gym couldn't stop laughing when I showed up with it. Of course, I neither drink or smoke while kicking, as the Paris Hilton situation has made me quite nervous.
hey, just wanted to give you an attaboy on your nice post to Califia the other day...you remember so much about people and are always nice and civil...this board needs civilizing influences, and youre always one of them...be well
Yes, a point well made.
I would see watching or listening to Paris Hilton before and after treatment as a much bigger risk of causing brain damage, than modest alcohol is.
I actually see this as the greatest threat to the Great Republic that is the US; infinite freedom of speech has resulted in a situation where morons with nothing to contribute (including that Judge Roy Pearson wanker who I see is suing that Korean dry cleaners for 64Million for losing his pants) are now wealthy celebrities BECAUSE of their stupidity. I am sure Thomas Jefferson would not have forseen that (and is spinning freely in his grave as we speak).
have a bad habit of scanning posts, but I see that youre going in for a biopsy?...hopefully, it will be nothing, I'm sure you have had some girlfriends, other women you know, that have had these scares and it all turned out to for naught...best of luck with this, and please report back to us, I'm concerned...sending healing vibes to you!!!!
Hold your horses, ha, ha....I don't see why a doctor would not treat a person who only drinks moderately before treatment....but I can see why some doctors are suspicious, I just can....
My doc told me that he'll get a patient on treatment, and the said patient will bow out of treatment and not be able to sustain treatment because of alcoholic issues, this has happened to him more then once, he says, over the years...
So yes, he is a little more cautious when he decides to treat someone...he'd rather have this "problematic" patient have the best chance possible to succeed in treatment, then have to start and stop, and everything in between....
If he suspects there is a problem (and there are plently of visual signs, along with everything else, usually) he gives that person the standard 6 months sober policy, and advises them to go into a treatment facility or get off of alcohol completely on their own...
Oddly enough, he will treat methadone addicts, he says methadone isn't as toxic to the liver as alcohol in any case....My doc is one of the Hepatologists who says no alcohol on treatment, and no alcohol *while* you have this disease...and or until SVR status...there are many doctors who feel this way, he isn't the only one...My Own, a member of this board, posted a very enlightening video by the famous Dr. Dietrich, I can't find it and I wish she'd post it again, where Dr. Dietrich says "no alcohol with this disease." MO could you please post the link again, I'd like to see it again, thanks!
Perhaps this poster's doctor is too cautious, and she needs to see another doctor to put her on treatment right away....My only point is, I suspect, these hepatologists aren't just cautions (for the most part) out of Puritanism, or Calvinism, or any of the isms except alcohoism...(btw, ghastly religions in my view).
They just probably have many alcholic drinkers (past and present, in their own practices) that have this Hepatitis and by now they've formed a prejudice, which is unfortunate....course I'll get holy h*ll for saying a lot of this, cause people will talk about stigmatization, and that I'm only adding to it, etc. etc. but there is that elephant in the room...There are a lot of alcoholic drinkers and substance abusers that have this disease....there I said it again...
OF COURSE, THERE ARE MANY, MANY PEOPLE WITH HEPATITIS C WHO ARE NOT SUBSTANCE ABUSERS, OR ALCOHOLICS...THEY GOT HEPATITIS FROM OTHER MEANS, TRANSUSIONS, ETC AND THEY SHOULDN'T BE LUMPED IN WITH THE ABUSERS....and of course this should be considered...and there shouldn't be any discrimination against these people because of these other issues...and once patients attain SVR, moderate drinking is okay (per my doc's orders) Hepatologists seem to disagree on this issue as well as a few others, as it pertains to this disease...
But geez, I'll just be talking to patients in the liver dept of the waiting rooms of the various hospitals I've been to, (and the various hep c support groups) and see there are many people who have this disease with alcoholic issues...Is it only me who sees this? Is it only me who has seen the upteenth person who spoke or speaks about their substance abuse issues on this and many other hepatitis C boards and forums?
Perhaps the docs should just give the benefit of the doubt to the patient....Maybe they aren't and are soley relying on "red flags" they see presenting in their patients...
Of course, where do I get off questioning a doctor, but it hasn't stopped me in the past....I just don't know about having *standardized* amounts of drinking in relation to Hepatitis C patients...7 drinks a week would be a whole lot for me, and maybe some other people as well, who aren't necessarily alcoholic....
I stopped drinking cause I would drink one glass of wine and i'd have a reaction, a headache, and a sickly feeling...then I'd try again, cause I liked my wine with dinner...and sure enough, I'd have a sickly feeling again...I finally just thought, the only reason I'm drinking wine with dinner, is I like the little buzz, the "breeziness" and the taste of the wine, but if I'm not enjoying it, better not drink anymore...so I stopped drinking....
That was 15 years ago, and I got diagnosed with this disease 7 years ago now, and you know what? I'm dam glad I stopped drinking when I did - and I wasn't drinking a lot in those days...(maybe the reaction was the hepatitis telling me something? I don't know) ...I just am....Maybe that's one of the reasons why I'm in such good shape after having had this for over 30 years...And people are just different in the way they metabolize alcohol...even from women to men...here's something I found by way of explanation...
Q. Does Alcohol Affect Women Differently?
From National Institute on Alcohol Abuse and Alcoholism
A. Yes. Women become more intoxicated than men after drinking the same amount of alcohol, even when differences in body weight are taken into account. This is because women's bodies have proportionately less water than men's bodies.
Because alcohol mixes with body water, a given amount of alcohol becomes more highly concentrated in a woman's body than in a man's. That is why the recommended drinking limit for women is lower than for men. (See Question 13 for recommended limits.)
In addition, chronic alcohol abuse takes a heavier physical toll on women than on men. Alcohol dependence and related medical problems, such as brain and liver damage, progress more rapidly in women than in men. (See also Alcohol Alert No.
I'm just pointing out what several doctors have told me, I don't mean to be disagreeable, and I really think it's great that you post here and help us, I really do, I've very much enjoyed your posts.....I just feel I wanted to post what my doctor thinks as well (He is the head of the liver dept of a major hospital here)....thanks and I hope there is no offense taken on anyone's part...
Of course! If you find alcohol, in any amount, makes you feel less well then don't drink (and I have many patiants with gut problems of different sorts, including very mild forms of liver disease, who say this). But if you do drink 1or2 beers per night 2 or 3 times per week to be sociable or to unwind after your days work has been a killer or your boss an ******* then you shouldn't feel guilty just because you have HCV.
We should also be clear in differentiatin those folk who do just the above from those who have an alcohol problem (of any sort, whether it by physical/psychological or legal) who, obviously, should not drink at all.
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.
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"....
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.
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....
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!
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!
Thanks... It's not really a vacation... more like a Quick Trip... I won't leave here till 3:00 & have to be back by 10:00 to give my puppy her insulin...
She is just gonna be near on business & already drove 12 hours to get there... so I figure I can drive 4 hours (round trip) to have dinner!
Just the rest of my weekend will be HECTIC, & scheduled..
My B'day is Sunday (Just another day to me) but my better half has to leave on a business trip that day for a big meeting on Monday... so I am sure my oldest daughter & her new hubby & my better half will want to make a big Tadoo, & take me to dinner on Sat. night & since I won't have a vehicle when he's gone, I have to go to the grocery store & stock up on Sat, too... ect Ect... I gotta tell ya... I'm looking forward to spending Sunday afternoon with just my grandson & doing NOTHING... Ahhhh! Needless to say I will be Totally BLOWING my diet over the next few days... Ugg... but then I should be good till Thanksgiving & Christmas,, Ha!
Yea, you hit the nail on the head with "Current Active Virus"... I couldn't & didn't (well except during that period between rounds) but the day I discovered the HCV, we were just sitting down to dinner, & I had only had the first sip of my wine when I got that dreaded call.... after that... it was like all I could visualize was Cyanide (sp) & I couldn't even force myself to finish my glass...
Never touched it again till I was already undetectable... (had absolutely no desire too either) & even later when I did partake, it was researved for special occations... So it really was moderate.
I think anyone that has ever done this & was being honest about it, would probably tell ya that it really isn't as enjoyable as some would think... I mean I don't know if it's from hemo's being low, or the other helper drugs that some of us take... but a little goes a long ways... so even though one MIGHT think they want a glass of wine... they might discover they can't even finish it... or loose the desire after the first sip!
Some of my friends are in AA & I have a LOT of respect for those that work the program... I also respect & feel for those that are struggling & suffering... That's why I personally would never advocate, nor condone it...
Ya know what else.. I really HATE This Subject...LoL... I'm done too!
See ya on the other side where we can enjoy lighter & more enjoyable subject matter!
Wish I would have read this before my husband and I went to Venice last March - I was dying to have a glass of red w/ my pasta on the Grand Canal! I probably wouldn't have anyhow - (best to err on the side of caution). Besides I'm probably not allowed based on trial protocol. Although I did pay $9 for a 1-liter bottle of water so it would have been cheaper to drink alcohol - lol!
AdamHCV: You asked about cooking with wine...I know everyone says the alcohol gets cooked off during the process...but I swear I got a buzz when I ate Tequila Shrimp recently - and it was flambeed tableside so I saw there was a huge flame that went on for awhile. Maybe it was just my imagination! (My brain is not what it used to be).
i would drink every other day all the way up until i started treatment. I didn't drink one bit after I started drinking. I'm now on week 9 and I found out yesterday that the HCV is not detectable in my blood. So pretreatment drinking I think has nothing to do with responding to treatment
Alcohol stays up to 40 hours in your body,since alcohol interferes with interferon it would be wise to start complete abstinence 1 week before one's first interferon shot and stay abstinent throughout treatment.This could be hard to do for a habitual daily moderate drinker,hence thats why they advice complete abstinence 6 months prior to to treatment,that way the habitual drinker will be less likely to fall back into his drinking habits during treatment.
Patients with Ongoing Alcohol Use
in those who completed HCV therapy, SVR was similar in drinkers and nondrinkers . Thus, alcohol users should not be excluded from antiviral therapy but treatment adherence should be stressed
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