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A nine year infection in a 27 year old is not predictive of serious liver damage although you can expect some fibrosisCystic fibrosis Cystic fibrosis - resources Neonatal cystic fibrosis screening and inflammation.
You will be prescribed unpleasant drugs which you will have to take for a long while.
The doctor may order a biopsy.
Stay off the booze,comply with the doctor and you will probably be perfectly O.K
Go get a biopsy and find out for sure exactly what is going on. Then you will know either way and you can turn the worry into action and do something if it's time or you can have peace. A liver biopsy is NOT a painful experience, there are no nerves in the liver to feel anything so it's sort of like getting a shot (although the anxiety that it IS going to hurt beforehand makes you crazy).
I don't know how much you have been drinking or how much dope you did. Can't really even take a guess at how much damage your liver has to it with those conditions you know? While it probably is safe to say it would be minimal liver damage - everybody is different and some people who have not been IVDs or drank alot have a lot of damage while others who drank like crazy do not.
So go speak to a hep doc and see if you can get the tests to let you know for sure. Find out your liver panel so you can see how high the liver enzymes are first off. Every time a liver cell dies it releases an enzyme...so the higher the number the more death going on. It's a place to start and just a simple blood test. Then get the biopsy. Since you are relatively 'clean' now your enzymes might not be as high as they once were when you were using so you'd really want to double check that way.
That's my advice to you. There's a good chance that you can get some peace of mind out of this and knowing your biopsy results will be handy for you for the future...you WILL need to monitor your liver damage from now on - liver damage is not linear it's not like it will take 20 years to get to stage 2 and then 20 years to get to stage 4. it can just sort of blow up all at once and take a measly five years to progress that fast. But knowing where you are now and then watching and waiting (if applicable) will make sure you don't ever get to end stage liver disease without knowing it (hopefully). They don't call it the silent killer for nothing - you DO need to be proactive and take care of your health.
A couple thoughts:
1. If you have HCv and are drinking (even once a week or two) then you are engaging in self-destructive behavior.
2. You have had this disease for 9 years. Why have you not taken treatment to get rid of it. It will only continue to destroy your liver - each and every year - until you get rid of it.
3. You are getting married in 4 months. Have you told your future wife that you currently have HCV ? Are you aware that the current statistics for transmission between monogamous spouses engaging in unprotected vaginal intercourse is 2% risk per year for transmission? That means in 10 years time your wife will have a 1 in 5 chance of being infected.
The above are hard things to think about. But for your own well being and the safety of your future spouse perhaps you should consider these things.
I am an open advocate of treatment. Without treatment your health will inevitably continue to deteriorate and you will remain a risk to others around you.
One more hard thing to think about. You said , "I was a heroin addict for about 2 years and have been clean for about 8 years." Then you said " i have drank heavily at times and sometimes daily. I owned a bar which kept me drinking alot for about the last 2 years."
You are going to hate to hear this but you need to. You have NOT been clean for 8 years. You have simply changed your substance abuse from heroin to alcohol.
If you care about yourself and your new wife - I suggest AA. Or NA - whatever you feel appropriate. In order to get rid of the disease that is slowly killing you now - you will have to stay off alcohol for up to one years time. Not even a glass. No marajuana or other drugs either. If the thought of that seems impossible to you - then you should be thinking about AA.
The decision to treat and when to treat is an intensely personal thing, and many factors must be considered.
You sound as though you have changed your behavior for the better and I wish you well in your marriage and with whatever course of action you elect regarding Hep C.
The facts are simply that everyone infected with HCV has a life threatening virus that will, in each and every case, cause liver damage as well as increased risk of cancer of the liver and pancreas.
All HCV patients will eventually develop liver damage. One out of five HCV patients will develop cirrhosis of the liver at some point their lives. One out of twenty HCV patients will develop liver cancer - essentially a death sentence without incredibly good health insurance.
Additionally HCV has been linked recently to highly increased rated of diabetes as well as destruction of mitochondria which is a major cause of fatigue.
And HCV is transmissible. Anyone here who has HCV got it from another person. Period.
Those are the facts. You ignore them or not at your own peril.
I began treatment 60 days after I was first diagnosed. One month into treatment I had no detectable virus and my blood tests (liver, glucose , etc) which had all gone WAY out of spec had returned to normal. 7 months into treatment I remain undetectable. I am going to live a long and healthy life and I encourage others to take the steps needed to do the same.
All HCV patients will eventually develop liver damage. One out of five HCV patients will develop cirrhosis of the liver at some point their lives. One out of twenty HCV patients will develop liver cancer - essentially a death sentence without incredibly good health insurance.
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This assumes that someone does not treat within a certain window which for many may be many, many years. I am also an advocate of treatment -- I treated myself -- but I only advocate treatment when someone begins to develop significant liver damage. Before that, one can reasonably wait for better drugs and avoid many of the potential side effects (short and long term) of these very toxic drugs.
You said : "This assumes that someone does not treat within a certain window which for many may be many, many years. I am also an advocate of treatment -- I treated myself -- but I only advocate treatment when someone begins to develop significant liver damage."
I am not sure it does assume that Jim. What I do know and have seen in the Journals is the the effectiveness of the current treatment is absolutely correlated with
1. How long you have had the virus in your system
2. Your current state of health
It was those tho things that were the key to my decision to treat immediately. If you wait until later, when you are sicker and the virus has resided in the body longer - current forms of treatment will be less effective then if you had treated today. This may or may not hold true for upcoming treatments but - we do not know either way.
The healthier you are and the less time you leave the virus in your system - the better your chances of success with current treatments..
HCV is a very slow progressing disease. Waiting a few years may not make any difference at all - or it may make all the difference in the world for an individual. No one can say. I prefer to give myself every possible chance.
AND: "...What I do know and have seen in the Journals is the the effectiveness of the current treatment is absolutely correlated with
1. How long you have had the virus in your system
2. Your current state of health
It was those tho things that were the key to my decision to treat immediately. If you wait until later, when you are sicker and the virus has resided in the body longer - current forms of treatment will be less effective then if you had treated today...
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Actually, this is not accurate, and in fact study data suggests that those who were infected at a younger age actually have a better chance of SVR than those infected at an older age. So in these cases, the *longer* you've had the virus, the better your chances, not as you state.
As to current health -- and I assume you're talking level of fibrosis -- again, studies suggest that only stage 4 have decreased chances of SVR with SOC. A stage 3 has the same chance as a stage 1.
Here is the study for "Win-R" that demonstrates that only stage 4 is consistent with a diminished chance of SVR. I've posted this study numerous times, and I could be wrong but practically certain that I posted it before in response to one of your posts similar to the one above. You and your doctor may not agree with the findings, but hopefully the next time you make these sorts of statements you will at least acknowledge the study to give people a better balanced viewpoint.
In conclusion, the authors write, “WBD of RBV is important to increase SVR in patients with more advanced stages of liver disease. However, overall only cirrhosis is a negative predictor of SVR when individual fibrosis stage and SVR is evaluated.”
Hey man, I'm 32 and since I found out I had Hep C I've had 3 actual drinks in a 3 month period. I used to drink everyday - just a couple beers, nothing crazy.
- Don't drink.
- Go see your Dr.
- Find out what genotype you are
- Decide whether to treat now or later
- I decided to treat now and it's working great
Relax, you're young and you know about it NOW, which makes a HUGE difference. It's like see the crocodile a mile away starting to crawl toward you. Plenty of time to deal with it.
The Andromedae Strain that was my favorite book/movie when I was little :)
HepC is not the AS - I would assume someone who is concerned enough about the disease to look it up and find an internet forum would be one of the large population of people that do indeed respect the health and welfare of others and would take the minimal precautions that are needed to protect their loved one from infection.
Perhaps this person only recently found out that they had the disease. They certainly konw when they were an IVDU and can assume that is when they got out the outset.
Certainly going from daily heroin and bouts of heavy drinking to someone who is now a mature person and drinks occasionally shouldn't be lumped in with the general alcoholic/addict you picture with a bottle of ripple in one hand and a syringe in the other laying in a ditch. People DO grow and change, thank GOD.
I have advocated no drinking and pro-treatment harder than just about anybody here. But to assume this person is in need of immediate treatment is absurd. MANY people do have the capacity to wait for many more years until they "need" to treat if they do not choose to. Not everyone is that freaked out by just having the virus and they choose instead to go by quality of life. Quality of life something that for me was pretty well ruinned by chosing to treat. However I had no choice and had to (by my standards at stage 3).
Get the biopsy and liver enzymes and make an EDUCATED decision with a doctor. Remember not everybody on the internet is rational and some people are downright pedantic. (Word of the day, thanks JD much more fun than "insipid").
ps Worried - the ultrasound is good but will only tell you if you have tumors (or cancer stuff). You DO need the needle biopsy to get a clear picture of how much damage you have.
You said: "Actually, this is not accurate, and in fact study data suggests that those who were infected at a younger age actually have a better chance of SVR than those infected at an older age. So in these cases, the *longer* you've had the virus, the better your chances, not as you state."
I'm sorry but we seem to not be connecting. I was talking about legnth of time of infection ie. how long the virus has actually been in your system. Your statement above only refers to age at time of infection. What you are talking about is something different then what I was saying Jim :)
You said "As to current health -- and I assume you're talking level of fibrosis "
No , I was talking about overall state of health. The following articles refer to this as they indicate that things such as anemia, cholesterol levels, glucose levels and amount of virus in the blood all are indicators of the probability of success with current treatment.
Thank you for posting the study indicating that stage 4 liver disease correlates to an decreased chance of successful treatment.
There are many predictors of success or failure regarding current treatment - high glucose levels, high cholesterol levels, high amounts of virus in the blood and stage 4 liver disease all are among the indicators of higher failure rates of treatment. And all of them are things that HCV will cause to occur in the vast majority of people with the disease as it progresses.
If you think about it, you will see that the "age of infection" thing translates with many of us into "length of time infected" which you have focused in on.
But that aside, there is nothing in the literature that suggests that the length of time infected impedes SVR.
As to the rest of what you posted, there is no reason to believe that one's health deteriorates because they hold off treatment, and in fact, the opposite could just as easily be the case, i.e. that someone's health improves during a "watch n' wait" period while living a liver healthy lifestyle. I could pick apart the rest of what you posted item-by-item but hey, I've got tendonitis, and possibly from treating!!! But here's one -- the viral load. Viral load does not necessarily increase as time goes by. It goes up and down for reasons known only to who knows who. My VL was 30 million plus three years before I treated. It then dropped down to around 100,000 a few months before I treated. Maybe you will explain to me how waiting the three years hurt me in terms of viral load :) I agree that there are many reasons to treat but just not some of the ones you mentioned.
Thank you for posting the study indicating that stage 4 liver disease correlates to an decreased chance of successful treatment.
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LOL. You ought to run for office with a spin like that. The point was that ONLY stage 4 makes a difference in terms of SVR. In other words you have the same chance of SVR as a stage 3 as you do as a stage 1. To me, this helps the "watch n' wait" argument as long as you watch intelligently. BTW there's still a Senate seat open in NY!
"As to the rest of what you posted, there is no reason to believe that one's health deteriorates because they hold off treatment, and in fact, the opposite could just as easily be the case, "
A fact that I admit I was a perfectly healthy 'young' woman before I treated - now, in addition to autoimmune diseases, high cholesterol and all sort of aches and pains that cause me to feel like an 80 year old woman on a good day - I know that my thyroid will never recover and although I'm SVR I still have advanced liver disease to live with forever.
My viral load after 25 years of infection was only 568k - if that is "up" and relevant than I shouldnt have been a stage 3 who had to extend because of slow response.
You said: " I am going to live a long and healthy life .....".
Your profile states that you are 101 years old.
I'd say you've already lived a long and hopefully, a healthy life but you porbably don't have a lot of time left.
I hope the little time you have left is HCV free.
Mike
Welcome to the forum and I hope you'll stick around, even if some posts on your thread seem to ignore you.
In answer to your question, most of us here can relate to you very well, in one way or another.
Staying positive about yourself and optimistic about your future is one of the best things you can do.
Before you give weight to someone's opinion, hang around and get the lay of the land. It takes time to sort out the participants and decide whose opinions you respect.
You're very young and as a mother bear of boys about your age, I want you to get the wisest advice possible. I resent if someone falsely pulls the fire alarm when you come looking for advice but hey, that's the dual nature of a public forum. There is nothing to be alarmed about, unless you're a knee-jerk alarmist.
The one thing I urge you to do is arrange for a LIVER BIOPSY. It's easy, easier than picking up your towels from the bathroom floor. Only then can you put together a plan.
Yes, it's really best for your liver to not drink AT ALL but many people here drank for decades, not knowing they had HCV.
You do need to tell your fiancee. HCV transmission is not a problem for nontraumatic, unprotected vaginal sex. Traumatic anal or traumatic vaginal sex is different.
I've had HCV for forty years and perhaps as long as fifty-eight years and had none of the dire consequence cited in some posts above. In fact, before treatment, I never felt a day over twenty but on treatment, I feel like a ghost, mentally and physically. And I'm one of my doc's 'best' patients, with minimal side effects. Being a ghost doesn't count for much to a doctor.
If you take two things away from all this, get your LIVER BIOPSY and tell your FIANCEE. I won't advise you about alcohol. Everyone else will rail against it, with some exceptions.
PA: Everyone else will rail against "alcohol", with some exceptions.
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Is that where I'm filed now, under *some exceptions*. LOL.
Look, heavy drinking can really screw up the liver but a number of us have and still do drink socially before and after treatment. With our doctors approval.
If we put as much attention here to diet, weight loss, cigarettes, etc, as we do to alcohol, I think we'd be a healthier lot :)
Trin - you're wrong I sure as heck DO have cooties, that is why when I found out I was hcv positive i made a cootie catcher. Surely you remember them! I put down the little numbers and on the inside flaps wrote "catch the cooties" "kill the cooties" "catch the cooties" "kill the cooties" and then I used the catcher to see what would happen.
Surprise surprise it worked! you know my two year anniversary is Feb. 8th already!
I should go into business - then all heppers would TRULy be cootie free in no time!
I'd like to beta test that cootie catcher. We only have a short time, though as I expect my PCR results for my 6 month post-ts test any minute now. Come on phone - RING!!!
- Dont' worry about a biopsy - you don't need the results from it to decide whether to treat or not, so it's a wasted procedure, in my opinion.
Huh I disagree 100% - why is this a wasted procedure since it's the ONE thing that will tell him for certain now if he has time to watch and wait or not? I totally assume he does but... Wouldn't it be better to know now and then be able to determine and judge going forward with a realistic number rather than a good ole fashion guess?
Don't let anyone talk you out of your clean time. Two yrs. off the H is something to bragg about. I have been an addict and am clean now. For sure andromedae has not been a junkie and don't know the disease. Congrads on the 2yrs. (but drinking is not good for your disease) You work out your own salvation with fear and trembling. And may we all clear this plague we have.
you are already getting a large amount of info by many very experienced people here. i wasn't aware of how necessary a biopsy was bc i never had one and went straight to tx with my hepa's ok. i might have had it for longer than i would like so decided to start tx now bc i was told the earlier and younger you tx, the better. so here i am almost on wk 32/48. and really actually starting to feel some of the sx now. but i have it easier than a lot of the people here.. everyone responds differently to tx.
im 27 Gt 1a Stage 2.. i needed the BX because i didn't know how long i had the disease for... i still dont know and i will never know.. I never try any hard drugs just some weed probably smoke weed like 20 times in my life.. i was a social drinker probably more than that.. you definitly will need the bx if you are a Genotype 1.. the doctors do not recommed a biospy if you are a Gt 3.. so find out your Genotype it is important if you deside to treat your HCV... like everyone said stay away from alcohol as much as you can and it is very good that you got off the junk .. dont be so worry about the Bx it is an important procedure and it will help you on making the desion to treat your not.. start reading everything you can on this forum about HCV... there are other websites to learn more also... i dont know them right now other people here do.. Stay away from the stupid natural BS treatments it doesn't work.. Im in my 2 week of treatment right now... I wanna be rid of this **** right now not later..
I hear people telling you a biopsy is important, yet everyone is pushing you to treat anyway. That sounds a little confusing. You're 27 and you've had it for 9 years. Most likely you don't have SIGNIFICANT damage but a biopsy will tell you FOR SURE.
Do you NEED a biopsy before you start treating?? NO
Fact: You have hep c
Fact: If you want it gone or want to start down the path to rid it from your body, then start treatment.
You do NOT need a biopsy to tell you what you need to do. Is it a the best way to tell you how your liver is doing? Yes. So what??
I started treatment without a biopsy. Why? Because knowing how my liver is doing won't help me. Treating will.
There are so many individual circumstances to someones choice for treating or not treating. I have probably had it for 30+ years, closer to 40 years, I'm 59 stage 1, grade 1 Geno 1 !!! no insurance, living with 86 yr. old mom, and I am going to wait. I'm trying to create a better circumstance for treating. I work in a dysfunctional situation for very little pay, I am waiting for better drugs, and will probably look into a trial.
Everybody has the right to ascertain their situation and do what they think is best. I know ppl who went through treatment with horrible sides, could not continue. Some dont realize the cure after treating, some are succesful.
I wish the best outcome from everybody...
Lets do what we can to support each other. Gnite
GC:
I hear people telling you a biopsy is important, yet everyone is pushing you to treat anyway...
Fact: If you want it gone or want to start down the path to rid it from your body, then start treatment.
You do NOT need a biopsy to tell you what you need to do. Is it a the best way to tell you how your liver is doing?
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First, not everyone is suggesting treatment. Second, you seem to have made up your mind -- either treat or treat :) Fact is that Watching and Waiting is a reasonable choice for those with little or no liver damage. The pro's and con's have been discussed in this thread and others. The biopsy gives critical info to make an intelligent decision unless of course your mind is already made up. The other thing, even if your mind is made up, a biopsy can guide you how agressively to treat should things get rough during treatment. Someone with low liver damage may reasonably treat less agressively in light of significant sides.
27 infected 9 years from IV use & heavy / binge drinker at periods through-out the 9 years of infection.
Everrybody reacts differently to HCV, but this is my current situation.
I got referred to a liver specialist and had a biopsy done. THe results came back Fibrosis 2, which really isn't good news for a 27 yr old.
Realising that new treatment isn't likely to be available in Australia untill 2012+ i felt i had no option but to start tx. I'm due to start in 2 weeks.
You should definately get a biopsy done, even though the results can be tough, it really is important to know where you stand.
I hear what you're saying Jim, regarding the watching and waiting. But really, the only reason anyone should watch and wait is if they've failed tx already. Or the sides were too much for them to handle. That's my firm opinion. It's been proven that waiting doesn't help anyone in itself.
So, if someone has just been diagnosed with hep c, then start treatment. Period. If you fail treatment or can't handle the sides, then get a biopsy and see if you can AFFORD to wait till new meds come out. OR, get on board with some of the trials going on with new drugs. Those are the three choices. Treat, trial, wait AFTER you've failed. Choosing to wait when you don't even know how you'll react to the current meds is stupid.
Welcome and big congrats for kicking stuff, I was hooked for a long, long time. I don't want to sound like I'm talking war stories or anything like that, but you have reached a height that not many ppl are able to attain. I'm sure you're starting to trim down the use of the alcohol because that will take you out quicker than a person who can still think could ever imagine. It's been suggested already, so I won't say it again, but if you worry about something you have no control over then you will become known as a worry wart. My message is only that it doesn't do any good to worry. If you live the good life then things will fall into place. You're getting married and your dropping the bottle, so think positive, live positive and treat everything and everyone well. If you found out you were HepC positive at 27 and HepC is known to stay inactive for 6months to a year and a half or so, you really haven't been chronic for that long. You should get a biopsy, so you can get a better picture of what your damage is to your liver. good luck.
GK:....the only reason anyone should watch and wait is if they've failed tx already. Or the sides were too much for them to handle. That's my firm opinion. It's been proven that waiting doesn't help anyone in itself...So, if someone has just been diagnosed with hep c, then start treatment. Period... Choosing to wait when you don't even know how you'll react to the current meds is stupid.
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I guess we have a lot of "stupid" people here and I'll include myself as doubly stupid per your definition.
The "Watch n' Wait" versus "Treat Now" has been debated here numerous times and while I most certainly fall into the "Watch n' Wait" camp, I do respect many of the arguments presented by the "Treat Now's" and their variations, and hopefully many of them respect my arguments as well.
But in all due respect, I just have the feeling that you really haven't done your homework here so there's really nothing to discuss except you might find more respect here if you refrain from calling people names like "stupid". Personally, I don't care because I think it just makes you look that way for those who have put time into this subject.
Oh, and that "stupid" suggestion I made to you when you first started treating about increasing your riba to weight based -- since when do you listen to stupid people :)
I want to add myself to the really stupid ones.... I insisted on wanting to have a biopsy, even though I am a geno 3 and had decided to treat right away. My 'clever' decision of treating right away was based on Stupid reasons... like I could financially afford to treat at this time, that it was actually a suitable time in my life to treat etc.
So it really doesn't matter, just treat without a biopsy. Even if you have decompensated cirrhosis, have no money at all, are too weak to treat at the moment, have no help or support group, or whatever. It's a no-brainer... just treat! NO MATTER WHAT... don't watch and wait. Even if you have hardly any damage. Don't wait for the new drugs, you should treat for twice the amount of time with a lower chance of beating this. If you don't beat it, treat again! The more exposure to the drugs, the better.
Okay.... enough of my Saturday ribacasm..... I just couldn't resist. I cannot even believe that we are having this nonsense debate here on the forum.
EVERYBODY should know that, if you can have a biopsy, have it! It is important to know the state of your liver. If for medical or other reasons, you cannot have one that is something different.
That feeling great you talk of sounds like there is a hint of low level Riba Rage coming out and is just about right on time. I have done and said some asinine things in the past two years but using the stupid word while feeding from the hand was not one of them. Lol
why would anyone treat without biopsy if they could have one considering soc really only works on about 40 percent of geno 1 in 1 year so if you had minimal damage why not wait 2 years increase odds about 30 percent in half the time lets see you have now told jim he is stupid desperate husband is a stupid coward if he does not leave wife when you now nothing of him happy to have experiance of hep lets see how happy you would be if treatment did not work or if did and turns out there is still lingring infection in your liver and ongoing fibrosis but you will never be able to understand any of that because you will probably clear in your 6 months i too have had this deasease since birth documented red cross traced back to 1958 6 body transfussions spent month in hospital at 8 over this it does not matter how one got this we our all in same fight i have treated to many times and probably wrong decision at times just maybe you our the stupid one or you have side effects and do not realize it
Jackson: soc really only works on about 40 percent of geno 1 in 1 year, so if you had minimal damage why not wait 2 years to increase odds about 30 percent in half the time
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That's the stupidest thing I heard. I know that because I say that all the time but I'm stupid.
I used the "stupid" word when I was new here and it was EPIC FAIL. I was the big moron who didn't recognize that it was probably a little of the drugs and probably a lot of ignorance on my part.
Fortunately we have things like compassion, love and forgiveness as humans with hearts. The words "I'm sorry" go a long way. And shutting up.
I'm stupid. I tx'd once in 1994 without doing any research (no computer then). The tx was unsuccessful which made me not "tx naieve". I was put on the 'watch and wait'; tx'g again was not forthcoming unless I had 'significant progression'.
Once blood tests appeared to show progression, I had to do a biopsy to be eligible, and the bx had to show significant progression before tx'g became an option (G3, not tx naieve).
I had blood tests done since 1994; they showed very little abnormality, as I tried desparately to look after myself. When I didn't take care my body and bloodtests soon showed me. The 'watch and wait' almost backfired on me (and my specialist). Eventually, even looking after myself religiously did not stop my bloods from starting to look awry.
I don't recommend anyone "tx'g or not tx'g"; it's a very very personal decision, and I find it hard to understand how anyone can recommend for or against. I'm thankful I found this site which allowed me to make an informed decision to tx, knowing more about what I was letting myself in for. I feel desparately sorry for those who come through tx heavily disappointed with sx's, lack of support etc. I cannot 'blame' anyone for my decision to tx this time around, come what may.
I may have watched and waited too long. I may have done tx earlier and reacted more severely. By grace I managed to sustain the 6 months tx. If I was younger, fitter, and less damaged I may have tried to wait for newer drugs.... but that could have also allowed my state of denial to run rampant.
I'm sorry I do rave on, but I think it's better than giving brief, definitive statements which may have huge bearing on another hepper and their family.
And BTW, the more I read, the less I know!! Everytime I get another sx, I do some research, and realise that sometimes I have 'guesstimated' incorrectly, when drawn by overzealous empathy to be of some assistance. There are too many many variables for us to 'sell' the tx'g argument.
AND (phew), it appears that many of my sx's have been related to my thyroid - next week, no doubt, I'll find out something else new (to me, but not to some of the really knowledgeable folk who thankfully keep posting!!)
"To: TMO
Don't let anyone talk you out of your clean time. Two yrs. off the H is something to bragg about. I have been an addict and am clean now. For sure andromedae has not been a junkie and don't know the disease."
Now that is one of the most unstupid comments I've heard in a long, long time. It is something AMAZING to brag about and anyone who isn't intelligent enough to understand that and give kudos where due shouldn't really be paid any attention to anyway.
Don't let anybody EVER take that away from you TMO - EVER!
Granite, I have to respectfully disagree with your assessment. I would feel that the goal here is to educate oneself about options and then decide a course of action. Deciding without really doing any investigation and education it not a well reasoned course of action.
Deciding whether to treat is likely one of the most important decisions one will make in a lifetime. I hope that no one ever decides based on reading a thread. (well; it would have to be one hell of a thread.) Just as I would suggest not deciding whether to treat based on one thread I would also suggest that we don't offer advice to treat in a persons first thread. ; )
One of the most important purposes of reading in a forum is to arm oneself with information about HCV and its treatment. I think getting a biopsy might be a very important step in that process. The results can illuminate whether one must treat now or could possibly wait for shorter and more effective treatments. There are many people on this forum who have failed treatment a number of times and who have had to re-treat. There are many people who responded slowly to treatment and who had to extend to longer treatment durations. There are many people who have suffered some form of temporary and sometimes long term issues which may be associated with current treatment.
In deciding whether to treat one may be faced with an approximate 40% SVR rate for genotype 1 naives. It appears to me that the Telaprevir and Boceprevir trials are coming out with better than 70% SVR rates. The Vertex seems to offer cutting the treatment time in half for a large group of fast responders. This will mean cutting the exposure to some toxic drugs and quite possibly some of the post TX issues which accompany current treatment.
I'd suggest;
1) Get a biopsy
2) Decide to become informed about HCV, current and future forms of treatment before deciding a course of action. It could just be that these people who have done a full course of treatment know something that others who haven't don't. ; )
Have you noted that TMO only posted once and that was about a week ago?
I don't know if he's read the thread or will return to post again.
When I was in college in the sixties, there were many pushers everywhere. Some were pushing LSD, some were pushing Marxism-Leninism, some were pushing burning bras. They all shared the same underlying personality. They were aggressive and bullying about their convictions, used intimidation as their primary tool to spread their product and were wild-eyed, blowing their own horn.
Things haven't changed much - it still seems the most ignorant are the most sure. Still pushing.
I have been clean from H for 8 years now not 2. And yes my fiance' does Know. Iam getting my blood work done this week and biopsy should be next week or after. Hope everyone is doing good
Many people, at least me, have taken you under our wing and want the best for you. Please disregard stupid posts. They're only a reflection of the people who posted them and not at all about you.
You're doing fantastically and congratulations on all your successes.
You will be prescribed unpleasant drugs which you will have to take for a long while.
The doctor may order a biopsy.
Stay off the booze,comply with the doctor and you will probably be perfectly O.K
I don't know how much you have been drinking or how much dope you did. Can't really even take a guess at how much damage your liver has to it with those conditions you know? While it probably is safe to say it would be minimal liver damage - everybody is different and some people who have not been IVDs or drank alot have a lot of damage while others who drank like crazy do not.
So go speak to a hep doc and see if you can get the tests to let you know for sure. Find out your liver panel so you can see how high the liver enzymes are first off. Every time a liver cell dies it releases an enzyme...so the higher the number the more death going on. It's a place to start and just a simple blood test. Then get the biopsy. Since you are relatively 'clean' now your enzymes might not be as high as they once were when you were using so you'd really want to double check that way.
That's my advice to you. There's a good chance that you can get some peace of mind out of this and knowing your biopsy results will be handy for you for the future...you WILL need to monitor your liver damage from now on - liver damage is not linear it's not like it will take 20 years to get to stage 2 and then 20 years to get to stage 4. it can just sort of blow up all at once and take a measly five years to progress that fast. But knowing where you are now and then watching and waiting (if applicable) will make sure you don't ever get to end stage liver disease without knowing it (hopefully). They don't call it the silent killer for nothing - you DO need to be proactive and take care of your health.
Good luck.
1. If you have HCv and are drinking (even once a week or two) then you are engaging in self-destructive behavior.
2. You have had this disease for 9 years. Why have you not taken treatment to get rid of it. It will only continue to destroy your liver - each and every year - until you get rid of it.
3. You are getting married in 4 months. Have you told your future wife that you currently have HCV ? Are you aware that the current statistics for transmission between monogamous spouses engaging in unprotected vaginal intercourse is 2% risk per year for transmission? That means in 10 years time your wife will have a 1 in 5 chance of being infected.
The above are hard things to think about. But for your own well being and the safety of your future spouse perhaps you should consider these things.
I am an open advocate of treatment. Without treatment your health will inevitably continue to deteriorate and you will remain a risk to others around you.
You are going to hate to hear this but you need to. You have NOT been clean for 8 years. You have simply changed your substance abuse from heroin to alcohol.
If you care about yourself and your new wife - I suggest AA. Or NA - whatever you feel appropriate. In order to get rid of the disease that is slowly killing you now - you will have to stay off alcohol for up to one years time. Not even a glass. No marajuana or other drugs either. If the thought of that seems impossible to you - then you should be thinking about AA.
You sound as though you have changed your behavior for the better and I wish you well in your marriage and with whatever course of action you elect regarding Hep C.
All the best,
jd
All HCV patients will eventually develop liver damage. One out of five HCV patients will develop cirrhosis of the liver at some point their lives. One out of twenty HCV patients will develop liver cancer - essentially a death sentence without incredibly good health insurance.
Additionally HCV has been linked recently to highly increased rated of diabetes as well as destruction of mitochondria which is a major cause of fatigue.
And HCV is transmissible. Anyone here who has HCV got it from another person. Period.
Those are the facts. You ignore them or not at your own peril.
I began treatment 60 days after I was first diagnosed. One month into treatment I had no detectable virus and my blood tests (liver, glucose , etc) which had all gone WAY out of spec had returned to normal. 7 months into treatment I remain undetectable. I am going to live a long and healthy life and I encourage others to take the steps needed to do the same.
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This assumes that someone does not treat within a certain window which for many may be many, many years. I am also an advocate of treatment -- I treated myself -- but I only advocate treatment when someone begins to develop significant liver damage. Before that, one can reasonably wait for better drugs and avoid many of the potential side effects (short and long term) of these very toxic drugs.
-- Jim
I am not sure it does assume that Jim. What I do know and have seen in the Journals is the the effectiveness of the current treatment is absolutely correlated with
1. How long you have had the virus in your system
2. Your current state of health
It was those tho things that were the key to my decision to treat immediately. If you wait until later, when you are sicker and the virus has resided in the body longer - current forms of treatment will be less effective then if you had treated today. This may or may not hold true for upcoming treatments but - we do not know either way.
The healthier you are and the less time you leave the virus in your system - the better your chances of success with current treatments..
HCV is a very slow progressing disease. Waiting a few years may not make any difference at all - or it may make all the difference in the world for an individual. No one can say. I prefer to give myself every possible chance.
1. How long you have had the virus in your system
2. Your current state of health
It was those tho things that were the key to my decision to treat immediately. If you wait until later, when you are sicker and the virus has resided in the body longer - current forms of treatment will be less effective then if you had treated today...
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Actually, this is not accurate, and in fact study data suggests that those who were infected at a younger age actually have a better chance of SVR than those infected at an older age. So in these cases, the *longer* you've had the virus, the better your chances, not as you state.
As to current health -- and I assume you're talking level of fibrosis -- again, studies suggest that only stage 4 have decreased chances of SVR with SOC. A stage 3 has the same chance as a stage 1.
In conclusion, the authors write, “WBD of RBV is important to increase SVR in patients with more advanced stages of liver disease. However, overall only cirrhosis is a negative predictor of SVR when individual fibrosis stage and SVR is evaluated.”
http://www.hivandhepatitis.com/2006icr/ddw/docs/052306_e.html
- Don't drink.
- Go see your Dr.
- Find out what genotype you are
- Decide whether to treat now or later
- I decided to treat now and it's working great
Relax, you're young and you know about it NOW, which makes a HUGE difference. It's like see the crocodile a mile away starting to crawl toward you. Plenty of time to deal with it.
HepC is not the AS - I would assume someone who is concerned enough about the disease to look it up and find an internet forum would be one of the large population of people that do indeed respect the health and welfare of others and would take the minimal precautions that are needed to protect their loved one from infection.
Perhaps this person only recently found out that they had the disease. They certainly konw when they were an IVDU and can assume that is when they got out the outset.
Certainly going from daily heroin and bouts of heavy drinking to someone who is now a mature person and drinks occasionally shouldn't be lumped in with the general alcoholic/addict you picture with a bottle of ripple in one hand and a syringe in the other laying in a ditch. People DO grow and change, thank GOD.
I have advocated no drinking and pro-treatment harder than just about anybody here. But to assume this person is in need of immediate treatment is absurd. MANY people do have the capacity to wait for many more years until they "need" to treat if they do not choose to. Not everyone is that freaked out by just having the virus and they choose instead to go by quality of life. Quality of life something that for me was pretty well ruinned by chosing to treat. However I had no choice and had to (by my standards at stage 3).
Get the biopsy and liver enzymes and make an EDUCATED decision with a doctor. Remember not everybody on the internet is rational and some people are downright pedantic. (Word of the day, thanks JD much more fun than "insipid").
I'm sorry but we seem to not be connecting. I was talking about legnth of time of infection ie. how long the virus has actually been in your system. Your statement above only refers to age at time of infection. What you are talking about is something different then what I was saying Jim :)
You said "As to current health -- and I assume you're talking level of fibrosis "
No , I was talking about overall state of health. The following articles refer to this as they indicate that things such as anemia, cholesterol levels, glucose levels and amount of virus in the blood all are indicators of the probability of success with current treatment.
http://www.hepctrust.org.uk/news/2008/News+From+AASLD+Liver+Conference+2008/AASLD+2008+-+IDEAL+Researchers+Look+at+Predictors+of+Response+to+Pegylated+Interferon+plus+Ribavirin.htm
http://www.natap.org/2006/HCV/080806_02.htm
http://www3.interscience.wiley.com/journal/118744890/abstract
http://www3.interscience.wiley.com/journal/112595705/abstract?CRETRY=1&SRETRY=0
Thank you for posting the study indicating that stage 4 liver disease correlates to an decreased chance of successful treatment.
There are many predictors of success or failure regarding current treatment - high glucose levels, high cholesterol levels, high amounts of virus in the blood and stage 4 liver disease all are among the indicators of higher failure rates of treatment. And all of them are things that HCV will cause to occur in the vast majority of people with the disease as it progresses.
.
But that aside, there is nothing in the literature that suggests that the length of time infected impedes SVR.
As to the rest of what you posted, there is no reason to believe that one's health deteriorates because they hold off treatment, and in fact, the opposite could just as easily be the case, i.e. that someone's health improves during a "watch n' wait" period while living a liver healthy lifestyle. I could pick apart the rest of what you posted item-by-item but hey, I've got tendonitis, and possibly from treating!!! But here's one -- the viral load. Viral load does not necessarily increase as time goes by. It goes up and down for reasons known only to who knows who. My VL was 30 million plus three years before I treated. It then dropped down to around 100,000 a few months before I treated. Maybe you will explain to me how waiting the three years hurt me in terms of viral load :) I agree that there are many reasons to treat but just not some of the ones you mentioned.
-- Jim
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LOL. You ought to run for office with a spin like that. The point was that ONLY stage 4 makes a difference in terms of SVR. In other words you have the same chance of SVR as a stage 3 as you do as a stage 1. To me, this helps the "watch n' wait" argument as long as you watch intelligently. BTW there's still a Senate seat open in NY!
A fact that I admit I was a perfectly healthy 'young' woman before I treated - now, in addition to autoimmune diseases, high cholesterol and all sort of aches and pains that cause me to feel like an 80 year old woman on a good day - I know that my thyroid will never recover and although I'm SVR I still have advanced liver disease to live with forever.
My viral load after 25 years of infection was only 568k - if that is "up" and relevant than I shouldnt have been a stage 3 who had to extend because of slow response.
Your profile states that you are 101 years old.
I'd say you've already lived a long and hopefully, a healthy life but you porbably don't have a lot of time left.
I hope the little time you have left is HCV free.
Mike
Welcome to the forum and I hope you'll stick around, even if some posts on your thread seem to ignore you.
In answer to your question, most of us here can relate to you very well, in one way or another.
Staying positive about yourself and optimistic about your future is one of the best things you can do.
Before you give weight to someone's opinion, hang around and get the lay of the land. It takes time to sort out the participants and decide whose opinions you respect.
You're very young and as a mother bear of boys about your age, I want you to get the wisest advice possible. I resent if someone falsely pulls the fire alarm when you come looking for advice but hey, that's the dual nature of a public forum. There is nothing to be alarmed about, unless you're a knee-jerk alarmist.
The one thing I urge you to do is arrange for a LIVER BIOPSY. It's easy, easier than picking up your towels from the bathroom floor. Only then can you put together a plan.
Yes, it's really best for your liver to not drink AT ALL but many people here drank for decades, not knowing they had HCV.
You do need to tell your fiancee. HCV transmission is not a problem for nontraumatic, unprotected vaginal sex. Traumatic anal or traumatic vaginal sex is different.
I've had HCV for forty years and perhaps as long as fifty-eight years and had none of the dire consequence cited in some posts above. In fact, before treatment, I never felt a day over twenty but on treatment, I feel like a ghost, mentally and physically. And I'm one of my doc's 'best' patients, with minimal side effects. Being a ghost doesn't count for much to a doctor.
If you take two things away from all this, get your LIVER BIOPSY and tell your FIANCEE. I won't advise you about alcohol. Everyone else will rail against it, with some exceptions.
----------------
Is that where I'm filed now, under *some exceptions*. LOL.
Look, heavy drinking can really screw up the liver but a number of us have and still do drink socially before and after treatment. With our doctors approval.
If we put as much attention here to diet, weight loss, cigarettes, etc, as we do to alcohol, I think we'd be a healthier lot :)
-- Jim
Trin - you're wrong I sure as heck DO have cooties, that is why when I found out I was hcv positive i made a cootie catcher. Surely you remember them! I put down the little numbers and on the inside flaps wrote "catch the cooties" "kill the cooties" "catch the cooties" "kill the cooties" and then I used the catcher to see what would happen.
Surprise surprise it worked! you know my two year anniversary is Feb. 8th already!
I should go into business - then all heppers would TRULy be cootie free in no time!
And won't breathe until you tell us. Am I done for?
- find out what genotype you are from a doctor (YOU NEED TO SEE A DR)
- after that, you'll know whether you should treat now or later (I suggest now)
- Dont' worry about a biopsy - you don't need the results from it to decide whether to treat or not, so it's a wasted procedure, in my opinion.
Huh I disagree 100% - why is this a wasted procedure since it's the ONE thing that will tell him for certain now if he has time to watch and wait or not? I totally assume he does but... Wouldn't it be better to know now and then be able to determine and judge going forward with a realistic number rather than a good ole fashion guess?
-- Jim
I am continually stunned at what I see here.
Mike
best of luck to you!
Do you NEED a biopsy before you start treating?? NO
Fact: You have hep c
Fact: If you want it gone or want to start down the path to rid it from your body, then start treatment.
You do NOT need a biopsy to tell you what you need to do. Is it a the best way to tell you how your liver is doing? Yes. So what??
I started treatment without a biopsy. Why? Because knowing how my liver is doing won't help me. Treating will.
Everybody has the right to ascertain their situation and do what they think is best. I know ppl who went through treatment with horrible sides, could not continue. Some dont realize the cure after treating, some are succesful.
I wish the best outcome from everybody...
Lets do what we can to support each other. Gnite
I hear people telling you a biopsy is important, yet everyone is pushing you to treat anyway...
Fact: If you want it gone or want to start down the path to rid it from your body, then start treatment.
You do NOT need a biopsy to tell you what you need to do. Is it a the best way to tell you how your liver is doing?
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I started treatment without a biopsy. Why? Because knowing how my liver is doing won't help me. Treating will.
GC:
I hear people telling you a biopsy is important, yet everyone is pushing you to treat anyway...
Fact: If you want it gone or want to start down the path to rid it from your body, then start treatment.
You do NOT need a biopsy to tell you what you need to do. Is it a the best way to tell you how your liver is doing?
------------------------
First, not everyone is suggesting treatment. Second, you seem to have made up your mind -- either treat or treat :) Fact is that Watching and Waiting is a reasonable choice for those with little or no liver damage. The pro's and con's have been discussed in this thread and others. The biopsy gives critical info to make an intelligent decision unless of course your mind is already made up. The other thing, even if your mind is made up, a biopsy can guide you how agressively to treat should things get rough during treatment. Someone with low liver damage may reasonably treat less agressively in light of significant sides.
27 infected 9 years from IV use & heavy / binge drinker at periods through-out the 9 years of infection.
Everrybody reacts differently to HCV, but this is my current situation.
I got referred to a liver specialist and had a biopsy done. THe results came back Fibrosis 2, which really isn't good news for a 27 yr old.
Realising that new treatment isn't likely to be available in Australia untill 2012+ i felt i had no option but to start tx. I'm due to start in 2 weeks.
You should definately get a biopsy done, even though the results can be tough, it really is important to know where you stand.
All the best
So, if someone has just been diagnosed with hep c, then start treatment. Period. If you fail treatment or can't handle the sides, then get a biopsy and see if you can AFFORD to wait till new meds come out. OR, get on board with some of the trials going on with new drugs. Those are the three choices. Treat, trial, wait AFTER you've failed. Choosing to wait when you don't even know how you'll react to the current meds is stupid.
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I guess we have a lot of "stupid" people here and I'll include myself as doubly stupid per your definition.
The "Watch n' Wait" versus "Treat Now" has been debated here numerous times and while I most certainly fall into the "Watch n' Wait" camp, I do respect many of the arguments presented by the "Treat Now's" and their variations, and hopefully many of them respect my arguments as well.
But in all due respect, I just have the feeling that you really haven't done your homework here so there's really nothing to discuss except you might find more respect here if you refrain from calling people names like "stupid". Personally, I don't care because I think it just makes you look that way for those who have put time into this subject.
Oh, and that "stupid" suggestion I made to you when you first started treating about increasing your riba to weight based -- since when do you listen to stupid people :)
-- Jim
So it really doesn't matter, just treat without a biopsy. Even if you have decompensated cirrhosis, have no money at all, are too weak to treat at the moment, have no help or support group, or whatever. It's a no-brainer... just treat! NO MATTER WHAT... don't watch and wait. Even if you have hardly any damage. Don't wait for the new drugs, you should treat for twice the amount of time with a lower chance of beating this. If you don't beat it, treat again! The more exposure to the drugs, the better.
Okay.... enough of my Saturday ribacasm..... I just couldn't resist. I cannot even believe that we are having this nonsense debate here on the forum.
EVERYBODY should know that, if you can have a biopsy, have it! It is important to know the state of your liver. If for medical or other reasons, you cannot have one that is something different.
jasper
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That's the stupidest thing I heard. I know that because I say that all the time but I'm stupid.
Where do these people come from?
Mike
Fortunately we have things like compassion, love and forgiveness as humans with hearts. The words "I'm sorry" go a long way. And shutting up.
Once blood tests appeared to show progression, I had to do a biopsy to be eligible, and the bx had to show significant progression before tx'g became an option (G3, not tx naieve).
I had blood tests done since 1994; they showed very little abnormality, as I tried desparately to look after myself. When I didn't take care my body and bloodtests soon showed me. The 'watch and wait' almost backfired on me (and my specialist). Eventually, even looking after myself religiously did not stop my bloods from starting to look awry.
I don't recommend anyone "tx'g or not tx'g"; it's a very very personal decision, and I find it hard to understand how anyone can recommend for or against. I'm thankful I found this site which allowed me to make an informed decision to tx, knowing more about what I was letting myself in for. I feel desparately sorry for those who come through tx heavily disappointed with sx's, lack of support etc. I cannot 'blame' anyone for my decision to tx this time around, come what may.
I may have watched and waited too long. I may have done tx earlier and reacted more severely. By grace I managed to sustain the 6 months tx. If I was younger, fitter, and less damaged I may have tried to wait for newer drugs.... but that could have also allowed my state of denial to run rampant.
I'm sorry I do rave on, but I think it's better than giving brief, definitive statements which may have huge bearing on another hepper and their family.
And BTW, the more I read, the less I know!! Everytime I get another sx, I do some research, and realise that sometimes I have 'guesstimated' incorrectly, when drawn by overzealous empathy to be of some assistance. There are too many many variables for us to 'sell' the tx'g argument.
AND (phew), it appears that many of my sx's have been related to my thyroid - next week, no doubt, I'll find out something else new (to me, but not to some of the really knowledgeable folk who thankfully keep posting!!)
"To: TMO
Don't let anyone talk you out of your clean time. Two yrs. off the H is something to bragg about. I have been an addict and am clean now. For sure andromedae has not been a junkie and don't know the disease."
Now that is one of the most unstupid comments I've heard in a long, long time. It is something AMAZING to brag about and anyone who isn't intelligent enough to understand that and give kudos where due shouldn't really be paid any attention to anyway.
Don't let anybody EVER take that away from you TMO - EVER!
Deciding whether to treat is likely one of the most important decisions one will make in a lifetime. I hope that no one ever decides based on reading a thread. (well; it would have to be one hell of a thread.) Just as I would suggest not deciding whether to treat based on one thread I would also suggest that we don't offer advice to treat in a persons first thread. ; )
One of the most important purposes of reading in a forum is to arm oneself with information about HCV and its treatment. I think getting a biopsy might be a very important step in that process. The results can illuminate whether one must treat now or could possibly wait for shorter and more effective treatments. There are many people on this forum who have failed treatment a number of times and who have had to re-treat. There are many people who responded slowly to treatment and who had to extend to longer treatment durations. There are many people who have suffered some form of temporary and sometimes long term issues which may be associated with current treatment.
In deciding whether to treat one may be faced with an approximate 40% SVR rate for genotype 1 naives. It appears to me that the Telaprevir and Boceprevir trials are coming out with better than 70% SVR rates. The Vertex seems to offer cutting the treatment time in half for a large group of fast responders. This will mean cutting the exposure to some toxic drugs and quite possibly some of the post TX issues which accompany current treatment.
I'd suggest;
1) Get a biopsy
2) Decide to become informed about HCV, current and future forms of treatment before deciding a course of action. It could just be that these people who have done a full course of treatment know something that others who haven't don't. ; )
best,
willy
I don't know if he's read the thread or will return to post again.
When I was in college in the sixties, there were many pushers everywhere. Some were pushing LSD, some were pushing Marxism-Leninism, some were pushing burning bras. They all shared the same underlying personality. They were aggressive and bullying about their convictions, used intimidation as their primary tool to spread their product and were wild-eyed, blowing their own horn.
Things haven't changed much - it still seems the most ignorant are the most sure. Still pushing.
Do you mean that people actually try to come back and read them? I wonder if MH knows this.
; )
-W
Many people, at least me, have taken you under our wing and want the best for you. Please disregard stupid posts. They're only a reflection of the people who posted them and not at all about you.
You're doing fantastically and congratulations on all your successes.
Port