I was diagnosed and successfully treated for hep c 1b 10 years ago with peg and rebitol. I have been undetectable until this year and am about to begin triple tx tomorrow. I believe i reaquired the virus through some inappropriate behavior several years ago but after reading other posts I am questioning my drinking as a possibility for the reoccurance. My question is should I completely abstain from alcohol (after I finish tx) I am obviously not drinking now but wonder if I am done forever. Thanks for a great forum.
My question is should I completely abstain from alcohol (after I finish tx) I am obviously not drinking now but wonder if I am done forever.
If this is your only question I must admit ,for the first time here I am totally stumped. Maybe someone else knows.
Maybe it's not the drinking as much as it is the "inappropriate behavior " you mentioned.
About the drinking, the good thing is that you know you can't drink while you are treating and you seem to be OK with that. You are going to have a lot of time on your hands to reevaluate and reflect on things over the next couple of months. Try not to be so hard on yourself. I would just focus on living healthy and getting better. We are here for you and you don't have to go through this alone.
If it were me, my decision would be based on the condition of my liver. If your liver has no fibrosis, it doesn't seem like drinking in moderation, would be any more harmful to you than to anyone else unless you can't control your drinking.
It's interesting, my sister had the same experience you describe. I had wrongfully assumed that because she drank moderately when she had achieved svr, that somehow the drinking caused it. It may have accelerated her cirrhosis but it did not give her hep. c again.
I understand your confusion.
BTW, i need to add that your drinking days should be over even though alcohol didn't give you the virus. Your liver really needs some tlc.
Yes, there is stage 3 fibrosis. 1st time through tx I was stage 2 and doc said moderation was ok after tx. Perhaps my definition of moderation is a little more vague. I have been through tx before so I know what I am up against and have read some of the other posts in this forum asking about abstaining completely. Just wondered what others were doing or learned. Being svr for 9 years and told my life is back to normal I though that included the occasional. I am told liver can heasl itself if not cirrotic so assumed I was OK.
Lets not forget that no one ever learned anything by speaking but by listening. Thank you those for speaking because I am listening.
by the way, inappropriate behavior was several years ago, I thought I dodged a bullet but maybe not. I deserve what I got and now its time to pay the price. Its great to be human - not perfet- but not an excuse. cheers all, I started this morning at 6:50 am. Calendar is filled out and journals started.
Congratulations on starting your treatment today. Hopefully it will be very successful.
If I had Stage 3 fibrosis, I think I would be very careful about drinking. It is true that some people's livers do improve after successful treatment but without another biopsy, how would you know. Why take the chance of further damaging your liver by drinking alcohol.
success so far. all I have left is my incivik at 11 tonight. think I will indulge in some cake frosting for my fat load. did the girl scout thin mints for afternoon (10 cookies) tomorrow will choose a more healthy fat.
I was surprised the Duncan Hines frosting really did not have that much fat. You would have to eat like the whole can! A much better choice for me was almost a cup of Ben and jerrys ice cream. So many flavors and a lot of them had huge pretzel, chocolate or cherry chunks which helped with absorption .
omg, i just did the math and its about 1/2 can. that's not gonna happen tonite! Probably won't ever happen unless its on a dare which i would encourage of course. Have to do the ice cream and some peanuts. Not trying to do a meal, just the fat for the inc. I can't meal at 10:30 but I can sure snack, he he.
I am with OrphanHawk you can have a couple here and there but not all the time no drinking on the boat with guys! By the time your healed after all work it takes to get there I cant even think of drinking but I will admit once in awhile I may have one or two but I am never going through this again.
too late on the peanut thing, did the ice cream and whipped cream, thought chocolate would have some fat but nooooooooooooooooo we get the fat free crap. anyway got the pills down, they feel about 3/4 the way down my throat, little heartburn. Hope I don't get the fire butt in the morning but i am laughing right now while I can. you guys are great.
Not concerned about the drinking right not, I am celebat for tx. will have to reevaluate life choices after tx done. going to be interesting on the boat as the boys don't know about this. Glad they are not lushes.
anyone know how to turn on spell check for these posts?
Vertex says to take the Incivek WITHIN 30 minutes AFTER eating a substantial meal containing at least 20 grams of fat.
I am not sure what they would consider a substantial meal, but I always ate something solid like buttered whole grain toast along with a big dish of Greek Gods yogurt. Or, if I ate the chedder cheese, I also ate a piece of toast or an egg. I think you need something solid in your stomach as well as the fat.
Here is a link to a thread that has suggestions for foods containing a lot of fat. Scroll down to 80mecheng's post. His is the big long one with all of the food listed:
with eating the fat, I have spent the last number of years avoiding fats. It seemed that every thing a wanted to eat was filled with it. now I can't believe it is so hard to get. My fall back is lays classic potato chips, 1 gram of fat in each chip. this afternoon I had McDonalds, regular fries 20 grams, tonight ice cream.
i can so relate to the 20grms of fat!! i pick up something i think will be loaded with it and its like 1 or 2 grms.lol annyway about the drinking thing...im currently on the triple tx. 2nd round of tx. i have 2 friends who have had the virus for 27-30 years and are both dying of liver cancer....i love to drink and did alot! but after watching what they are going through i think i will be okay to never drink again....just a thought...good luck with your tx....
Welcome back to treatment. Hope fully your sides will be minimal. Sometimes for a fast cheat I eat the 2 Costco frozen angus cheeseburgers w/ a small dallop of cheddar slice for good measure. Good and quick....or, 1/2 large avacado in a healthier moment if you can have that with fat....On week 9 of incevik...Looking to the end of week 12 for sure...Best wishes
Crigger - haha I think it is whether or not a SVRed lucky person can drink alcohol again in limited amounts - moderation? Not sure
Rog - Congratulations on diving into the restorative waters, the baptism of your renewal - triple attack. Good Job! You are going to do better than you think once you get use to the water.
A doctor at NIH in Bethesda - Dr. Rotman who was in clinical trials instructed me to continue my daily glass of wine with dindin. It seemed contradictory. I really couldn't bring myself to accept that risk. I do however have one last bottle of my mothers Spanish wine that I plan to toast with only on my first years anniversary of SVR (hopefully). Bona suerte
Rog....I'm thinking,(fearing) that maybe after you SVR (again) and have a few glasses of wine (or what-ever your alcoholic vice was), that more "inapropriate behavior" may commence to happening....and I dont htink we are politely talking about sharing someone elses' tooth-brush here, or even rough bloody unprotected sex? Just sayin....
One thing I dont understand, about your recent relapse: Were you tested, within a year after you feel like you were exposed to blood products ( several yrs back), because the Hep C virus shows up, within two weeks to 6 weeks of exposure. It doesn't wait several years, and then pop up, from my medical understanding~
I mean, did you have a negative Hep C test, say..two yrs ago, but this year, it was positive? Or did younever goet tested, after High Risk behavior occured?
if i had been thru what u have been thru with your liver i would stay away from all alcohol and minimize any substances that add stress to your liver including medication unless necessary and even many supplements. moderate drinking has different meaning to different folks. if u insist on drinking i suspect u have some addiction issues, sorry. maybe only early stage but why push your luck? i have experienced and read of too many sad stories about liver damage to see why one needs to take such a risk. there are some wonderful beverages with out alcohol. do some research at your local health food store. if u miss the booze a lot there is the answer. welcome back and best of luck, babs
oops i almost forgot. why not try some heathy fats like avocado or nut butters. if u are lucky enuf to live longer u may want to have taken care of your body to prevent further damage. greek yogurt is great in a smoothie with avocado raspberries and oj. good luck
re testing. good question. I have been tested annually since I was svr. with no detectable. Got a little cocky and played, safely, then stopped. it was a couple of years later (after stopping) that alt and ast spiked. I retested and showed vl about 200,000. So back to gastro and told them what I did and they wanted to recheck my geno again. When this test came back there was no type because the virus was once again nondetectable. thought I dodged a bullet but following year (Jan this year) detectable again. vl 280,000 got geno 1 b vl 380,000 then something doc didn't like about alt and ast, they were a littler higher than they should have been so we scheduled ultra sound,then mri then biopsy. Keep in minnd I am trying to time my insurance to max out deductible and treat this in one calendar year so I am getting a little anxious about the delays. after a few more blood tests to rule out mri issues we got set up for tx. Same geno as before so maybe it was stresses on my liver from moderate excessive drinking. I am stage 3 fibrosis now, (last time 2) but am told that the liver can heal itself. I used to drink alot but not so much anymore. 6 pack lasts in fridge a month and maybe a drink out at dinner, big problem is gold and fishing, those are my weaknesses and caution flags. I do not have suseptability to falling down with the drinking, my circle of friends is different.
I will say that after looking at the stage 3 pics, I was disgusted. There is no urge what so ever for a drink right now. I will have to be careful if I decide to play that it is with fire. This mind thought is usually enough to say no thanks.
Hope I got all questions answered, good to see new faces, on day 3 and feeling a little better today.
Thanks for the Reply Rog~ I know I can be very curious, when it comes to this Hep C disease.
It seems quite coincidental that you have the same exact genotype you had before.(10 yrs prior, and yr original genotype)
Like you said, you "played safely", and it is pretty rare for people to reinfect, after Tx, even people who actively use, according to stats, and like you said, your slip up soiunded brief.
I am thinking maybe because you are a Genotype 1, who was cured with the old SOC, back in 'the day"..that a tiny bit of your old virus was hiding (in your liver, so it wasn't detected in your blood)
So my second guess is that, yes, you may have "released the dragon", by drinking alcohol. It really is like throwing lighter fluids on burning coals, to add alcohol ot our livers now.
I quit drinking 20 yrs ago, when I found out I had Hep C, and I am now at Stage 2 (and Triple Treating) I hope you stay away from alcohol now, as well.
Good luck with your fatty foods, and I think your Tx will work better, with the healthier ones
I reinfected myself. Body cleared 1b on its own...years later I got 1A. I feel there really is no "playing safe" with IV use....drugs cause us to be not fully aware of our surroundings...we trust people telling us "that ones clean-" overlook using the same "works." We also will use the only needle there is in desperation.
If a person is Genotype 1, then that person is either Genotype 1 (with no subtype), Genotype 1A ,or Genotype 1B. Therefore, if a person attains SVR and then subsequently gets reinfected through a new exposure that person has an 80% chance of getting reinfected with Genotype 1. Rather high odds, I would say. Because Genotype 1 is the most prevalent Genotype in the USD, naturally a person is much more likely to contract it than some other less prevalent Genotype. This would be true whether it was the first infection or a subsequent infection. So being reinfected with Genotype 1 is not coincidenctal. It is directly related to the fact that Genotype 1 is the most common Genotype in the US.
"a tiny bit of your old virus was hiding (in your liver, so it wasn't detected in your blood)" .....
"and it is pretty rare for people to reinfect, after Tx, even people who actively use, according to stats,"
I highly doubt the Hep C virus was undetectable but was still hiding in the liver for 10 years. And it is NOT rare for people to reinfect if they have another exposure.
"High incidence of hepatitis C virus reinfection in a cohort of injecting drug users"
"Conclusion: Our data suggest that HCV infection in IDUs is more likely following prior infection and clearance than in HCV-naive individuals, implying no increased immunity against further infection. This result has important implications for the future development of an HCV vaccine. "
"So my second guess is that, yes, you may have "released the dragon", by drinking alcohol."
Alcohol is not good for the liver, especially if the liver is compromised by Hep C, but there is no evidence that drinking Alcohol "releases the dragon" or in any way reactivates Hep C once a person has attained SVR.
Its possible that that I relapsed but unlikely. I was always told that undetectable is just that, undetectable, not necessarily not present. My doctor was surprised at the length of time before relapse and was ready to restart me on tx until I came clean with him. I hate the disappointing head shake with the silent tsk tsk. I f'ed up and came clean with him so we retested geno. yes it was the same so it is chance that I just relapsed. Sounds like the new triple does better job than previous.
If you relapsed after 10 years you should be contacting the HCV scientific community so they may study you as this has never once been documented.
There was one case I believe documented that was after 8 years and this was considered "extremely rare"
If you were engaging in what would be any "high risk " behaviour since your last treatment attempt then this would be assuredly the reason for another contraction of the virus ..regardless of Genotype..
Rog its ok your in treatment now and you can move forward from here! Dont punish yourself you admit it and your going to get well hey you did it before and you will do it again and stay that way! Were all human so we try and learn from our mistakes sometimes its not always the first round. I am almost done with "The Shack" Love It!
Keep your head up high and keep pushing...
If you wondering if you can have a drink after what you've been through maybe you need a meeting instead of a drink.
Insanity is doing the same thing but expecting a different result. Maybe I'm missing something here. If I had lung cancer would I smoke?
Hahahhh. Where do I get this stuff? Like I have told you guys over and over agian, form my Most Beloved Doctor, Dr. Diana Sylvestre. She is an Internal Medicine Doctor, and an Addiction Psychiatrist.
She gives us a weekly 45 minute Lecture/Seminar, after our weekly HCV Support Group. I have been attending these weekly Lectures for 7 months now, so that is a total of 28 Seminars, I have attended.
I got my Stats from her Lectures, concerning reinfection. The thing is, the OP was infected with Hep 1b both times, where as, I actually think 1a is the common one, in the U.S., and I dont know where the OP is actually from, region-wise.
Like willBB stated, up above, there has been one rare case of a person being reinfected, after 8 yrs, etc. And what the OP also stated, was that he has gotten tested YEARLY, since he reached SVR, so, a year after his High Risk Behavior, his reinfection was NOT picked up, on his VL test.
After SEVERAL years, it was picked up...and then, when they tested him again, they then found NO vl again!! Then they tested him again, and found VL, and the gentype 1b, the same type he had, originally.
So, you see..his case IS unusual. And the problem with Medical Science, and Disease, is that these anomalies DO occur, rare, albeit, but yes, they occur!
I'm just wondering if any of my constant "doubters" attend Hep C Seminars, by a Docotr who specializes in treating Hep C, and she has been doing so for years now. Dr. Sylvestre has written books, won awards, and in-fact, I just had an Acting part, in a Hep C Eductional Video, that she put out! When I find the URL, I will post it on this Forum : )
It is true that Dr. Sylvestre is a highly reputable and competent Dr. I have heard of her from several people and I have read a bit of what she has written.
I won't comment on this particular issue except to restate that my sister too, was reinfected after 8 years. Her Docs were not shocked, it was unusual but they didn't consider it to be off the chart weird.
You are right anomalies do occur, you use your wonderful imagination to try to put into images what may have taken place. Sometimes it is funny, sometimes off the wall and sometimes right on.
I take the stuff I consider "out there" with a grain of salt, well several grains, really but BoceGal you are an example of how people think differently. Not better or worse just differently. I like that you just keep going, keep your humor and your friendliness.
I have actually learned a lot from the more scientifically minded people here. I have learned to slow it down and carefully reread what people are saying and I know better (Usually, not always) than to try to delve into something I don't understand until I have taken the time to really consider what the point is..whether it is a reference or a post.
Sometimes I get angry with the way some folks treat you (and myself and others) but honestly aside from learning how important it is to be kind to people, I have learned from them to stop think, read and think again.
It is part of the growing and at this moment, anyway, I am feeling da love.
Regardless of the type of HCV, they all cause the same disease -- hepatitis C. In the United States, about 57% of people with hepatitis C have genotype 1a, which is the most common type. Genotype 1b is in about 17% of people. Genotypes 2 and 3 are the next most common.
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