It's true that Viral Load alone does not represent the amount of liver damage, however most people with liver damage from Hep C have high Viral Loads. When determining weather or not to get a Biopsy I used the following factors.
length of time with the virus... 25yr
slightly elevated liver enzymes [25yr]
tumor markers [high]
Viral Load... increase from 250,000 to 4,800,000 over 10 yr
it can be argued that all of the above are innaccurate however taken as a total pcture, they tell a story. In my case it was suspicion of early cirrhosis.
The Viral Load fluctuated over the years but the yearly trend lines were always up.
This is a pretty old thread, for this forum. To get into active conversation, I suggest hitting the "back to community" link, and then hitting the "post a new question" (or something like that) link and write out exactly what you have written here.
Honestly, there is not much difference in 37,000 and 4 million in terms of viral load (are you talking international units (IU) or copies? The current treatment includes both interferon and ribavirin. For genotype one, a new medication is added called a protease inhibitor (targets the virus) and there are two choices, Incevik and Victrelis. You will find many many folks here waiting to treat, treating, and who have completed treatment (as I have). Many of us have had the virus 30-40 years unknowingly.
I know the initial diagnosis is a sobering even and can lead to depression, but you have found a good place to get information and support. Welcome to the forum.
I found out I had Hep c (Genotype 1) when I had my daughter 11 years ago. My only way I could have 'caught' it was when I did something totally stupid when I was in my early 20's, meaning I've now had the virus for near on 30 years. Viral load 2 years ago was 37,000 odd. I panicked, but my doc reassured me that was nothing to worry about. Finally everything is beginning to scare me, an 11 year old needs her mum around for a long time yet. So I have not had ONE DROP of alcohol pass my lips, quit smoking 4 years ago and have generally tried that bit harder to stay healthy. 2 weeks ago my viral load came back as over 4 million, and to say I am very depressed is an understatement. Next week I am seeing my Liver Professional, she assures me there is new treatments out there other than interferon and riboflavin. So I will be wiser this time next week, but wanted to share my story so we can all lean on each other, as I am FREAKING at the moment!! Love to you all, Pheobe
maggie, there are some other threads on liver biopsy about the size and the amount of cores the doctors want. Yes, the damage can be uneven, but this is still the best way to determine damage. I know they can tell from a physical exam whether the liver is hardening (a bad sign) but I just wonder who your doctors could tell you had no scarring.
Thanks for your response Dee1956. and I know that is the thing--how much damage has been done. My question is: How can they really tell where to take the biopsy when there is no spot on the outside of my liver? They could take a chunk and maybe nothing will be in that location--am I right or wrong? Could the miss a bad location?
Both the operator and my doc commented that all was beautiful.No scarring, no enlargement not a spot on anything. That is mystifying to me.
Thanks again and yes I am now hoping just for 10 years. I now know that the condition of my liver is everything. I have changed my diet intirely to a strict vegetarian. It was easy actually becasuse I had already done most of it before this occurred. I am looking at just maintaining and doing nothing to make it worse--for the moment. From what I am reading, not to much will be recommended in my age category as far as going through the only treatment available. It is so sad to know that so many new treatments have been touted to be available for so many years and then nothing. Lets hope this changes--- like soon, for all of us! Once again, you all have been so great to communicate with. It really does help to somehow maintain a little bit better.
I just wanted to tell you how sorry I am. I know how shocking it can be to be diagnosed with HCV, evidently I had it for 30 years before being diagnosed with cirrhosis. I was in shock for several months. You are doing the right thing in looking for more information. Everyone above has given you excellent advice, some had to have liver transplants before treating. The most important thing to do is find out how much liver damage you have. I wish you the very best
I don't want to scare you but I always thought I'd live to be an old lady as my family lives well into their 90s. I ate well, was active and shocked beyond belief when, I was diagnosed with hep C and decompensated cirrhosis.
My point being, the only thing that is important is the condition of your liver.
Of course, life style fits into all of this and I like to think I've done as well as I have partially because of those things.
If your liver is not damaged, do indeed wait for the new orals or look into getting into a trial. Forget about what your viral load is or isn't. It's your liver that is important.
I have terrific genes behind me with a mom still alive at 96 yrs old. All of my fathers side made it to 90 yrs of age. Great grandmother made it to 90 on my mothers side. I thinkof that all the time and basically know if this blood transfusion had not have happened, I would live to be at least as long as my mom or longer. I have always said she would mke 100 yrs old. There is really no history of cancer in my family. My dad's only time in a all hospital for a bypass and home in three days. He was 79 yrs old. By the way, all my relatives were always slender and thought about what they were eating meaning quite healthy. No alcohol was every around either. So that is why I am so upset and having a hard time adjusting to this insidious disease. But, yes I will do what I can to get the word out. By the way there is a petition started at change.org to get the Feds involved with Gilead and get people aware of this.
you have a great attitude and your desire to educate others is wonderful to see. I wish you the best. We all know the hard decisions that lay before you.
As for the age thing, I don't know what to say. Do you have long genes or short genes ???? How long did your parents live? And does that matter? What is your life expectancy? You will give up 6 months or a year of your life if you treat, and you may or may not clear the virus. Does that outweigh the risk of having more liver damage. Only you can make the decision.
Advocate1955--A special thanks for the latest info. All very helpful. I knew most of it but each piece of info does help. I am extremely healthy and have always been. I don't even get a cold. I think my friends think that I am invisible. Of course, I am educating them. Because of my involvement with my hospital, I am going to request that we provide a blood test at our health fair for HCV every year. Also, provide information about it. As I have said before to my friends, "who knew that this was going on". I am not keeping it a secret at all.I think it is a responsibility now to educate.
Yes, and I will be proceeding as soon as my Doc returns. She assured me that this is what we do next. Once again, this is the best forum and what a great group of people to have to help all of us new ones start the journey.
There is no way to predict how quickly or slowly your liver damage may progress. Until you know how much damage you have right now, it will be difficult to speculate about whether you should treat now or wait until the new polymerase inhibitors are available, hopefully in a couple of years. Generally speaking, liver damage progresses more quickly as people with Hep C get older. Generally speaking treating is more difficult as people with Hep C get older. A doctor who specializes in Hep C treatment will be able to guide you much better after you know the results of a biopsy or fibroscan.
In the meantime, there is no need to worry while you're waiting to get those things scheduled as soon as possible. Liver damage doesn't progress in a day or two or even in weeks or months. As long as you make the appointments and do the follow up testing as soon as possible, in the next month or two, so that you have more information on which to base your decision is fine.
Treatment with current medications is tough, no doubt. The good news is it sounds as though you are generally healthy and not overweight. The difficult news is your age, which will make treatment more difficult for you. If you are otherwise healthy and active, you can probably manage treatment living on your own, if you plan ahead and have some strategies for having things at home that you might need to make treatment a bit easier. However, it is a tough treatment, and would certainly be easier if you had some support (someone to help with grocery shopping, someone to drive you if you're not feeling well, someone to help with heavier work around the house, etc.).
Back to your original question: liver healthy diet, no alcohol are both a big yes. Ask your doctor before taking any supplements, pain relief medications, or herbs.
First things first, get your appointments made as soon as you can, wait for the results, and then discuss treatment options with your doctor.
Thanks so much for the info. My doc will not be around to give the recommendation for a couple of weeks of who I am going to see for the next step--biopsy or the fibroscan. I understand all that you all have said clearly. I think the age thing is bothering me quite a bit now-I have seen that a few times about the progress speeding up. I now have friends who are telling me about friends or relatives of theirs who have already died from this. They were actuallly afraid to tell me. Most did not change their habits at all involving smoking, alcohol use or diet. I am still absolutely scared of the current treatments and those side affects. I don't have someone living with me and staying with my kids and my young grandchildren just seems to much to put on them. I want to hold out for something without the interferon--but that may be asking for a miracle.
I agree with most of the posters above. The VL is irrelevant. It can fluctuate daily, and a high VL does not mean more or faster rate of damage. A low VL does not mean less damage. It is the presence of the virus in the blood that leads to the liver damage. If the virus is present, it is damaging the liver. As frijole said, the progress of liver damage can be slow, but sometimes it can be faster. My husband's VL has always been in the middle range (except when undergoing treatment of course), and yet he progressed from f1/f2 in 2007 to f4/Cirrhosis in 2010. As others have said, your next step is to learn as much as you can about your specific stage of liver damage so that you and your doctor can determine the best course of action. At your age, your risk for progressing to Cirrhosis is higher, and if you progress to Cirrhosis, treating your Hep C becomes more difficult. Here is some information about viral load from my journals that another forum member, hrsepwrguy, shared awhile back: http://www.medhelp.org/user_journals/show/332522/Viral-Load-HCV-Equivalents-per-Milliliter--Viral-Load-Chart
Feel free to ask any questions.
My husband never had a biopsy either before his liver transplant. He had cat scans and ultrasounds. He was diagnosed with cirrhosis, ESLD, hepatic encephalopathy and esophageal varices (which were banded). As I recall, they felt doing a biopsy was an unnecessary risk in his case..
You can know a whole lot about the liver histology without undergoing a liver biopsy. Although there seems to be a consensus here that everyone should get a biopsy I am not in agreement. I never had a biopsy before my transplant and yet I received a liver. And yes, my liver was shot.
There is Fibroscan and blood test results that can often diagnose pretty accurately the shape of the liver.
Now, that's not to say I have anything against against liver biopsies. I've had more than I can remember but it's been at least 8 and some of them were performed in my hospital room and obviously there was not ultrasound guidance with those. I found them to be no big thing although I do prefer the ultrasound guided ones.
for my particular situation, I agree with your statement.
However, some people I know of knew they had HCV decided to go the healthy natural route, did keep track of their viral load (stayed low, very low), as well as their liver disease progression.
I respect your opinion and I agree that drawing conclusions is difficult, at times.
This is the reason most of us encourage you to have a biopsy. It truly is the only way to assess the stage of fibrosis you have. Plus, I understand the older we get the more rapidly fibrosis can progress:
". I have heard of others keeping their viral load low for a long time through healthy lifestyle.
But they don't know what their VL would have been otherwise. Drawing conclusions in regard to HCV is difficult.
I did not know I had HCV for 37 years, just recently found out this Jan. I have lived a healthy lifestyle for my adult life. I always ate right Lots of fruit and veggies, very little red meat, worked out, no street drugs, little alcohol, green tea, and some supplements. My viral load at treatment time was only 14,000. I have heard of others keeping their viral load low for a long time through healthy lifestyle. Not sure about lowering the vl, I heard that viral loads go up and down anyway.
That said, as others have said, viral load is no indication of liver damage and yes a healthy lifestyle can help your liver, but not prevent damage. This is why I started treatment even though my viral load was so low. All natural treatments will not cure you of the virus and as long as there is virus, your immune system will continue to fight it, causing damage. The only thing that will cure it is treatment. I am not pushing treatment mind you but as others have said, you need to have a biopsy done and go from there.
I don't think I can add anything here. I have recommended you get a biopsy on another thread. There is virtually no difference in 6 million and 10 million when it comes to IU/mL as will said. Those little buggers are constantly dying off and replicating and the numbers change daily - hourly. The only thing that matters is how damaged your liver is. Take heed of what orphanhawk said so consisely -- if diet and lifestyle were the key, she would not have had a liver transplant in the first place.
I told you on the other thread - and I am just a few months short of 65 - that my liver condition went to cirrhosis in the last 3 years. And never have I had a symptom and my liver enzymes have always been in range.
So do yourself a favor and at least get the biopsy.
"Am I understanding that I am capable of lowering my viral load"
Where did you read that. One thing about HCV is there are a lot of snake oil salesman out there claiming crazy things. Be careful when coming to conclusions,