Hi there, and welcome to the discussion group. As far as your test results are concerned, I won’t try to interpret the Hep B data. The pertinent Hep C information is yoiur genotype and viral load.
You already know your genotype is 1a, so that’s no surprise. The ‘HCV QUANT’ is your viral load of 1,630,000.
You mentioned ‘Get this when I was in my 40's the doctor told me I had about 10 years. So I guess I'll die soon.’ I don’t think you have nearly enough information to arrive at that conclusion; seriously.
The majority of us will die of something other than our HCV; even if we never manage to resolve our infection through treatment. Statistically, only 20% of us will develop cirrhosis, and of those, only a percentage will go on to succumb to it.
Have you had a liver biopsy recently? This is the best tool in the bucket to illustrate how much fibrosis, or scarring might have developed.
I was genotype 1a, and had to undergo treatment two times before I managed to get rid of it. As you know, it can be a challenging experience; how long ago did you do your treatment? There have been some advances in the interferon/ribavirin therapy; pegylation of the interferon has made it more efficacious than previously. Additionally, there are new medications in clinical trial right now that will hopefully be available by this time nest year.
Stick around and continue to ask questions, and good luck—
Thank you so much for your reply. I have had 2 biopsies both times they wanted me to start again on injections. The first time I had a bad accident and broke my leg and was in a wheelchair for 6 months. The rehab place I was in stop giving my my injections and I forgot because I was on too much pain meds. Second time I got so sick I couldn't even get out of bed. The doctor said it wasn't working so there was since in continuing. That's been about 6 years ago. I'm a recovering alcoholic sober since April 2009 and that didn't help me. It seems since I've stopped drinking I started feeling worse. So tired..... I had to move in and take care of my mom and dad both with Alzheimer's. I had to quit my job, move out of my place into theirs, file bankruptcy and let go of my car. My live has been very stressful. This is one of the reasons I wanted to get test again. I went to Parkland and they gave me insurance to go to the doctor. They are given me test but I never hear the results. I do get a sonogram in July and a GI. Part of me just doesn't want to know and the other part does for my son. He worries. Sorry talk talk talk
Welcome to our group!
As Bill says, a lot of things have changed in the past years. They are lots more able to fight this dragon than they used to be, and in the next few years, things will look even better for us 1a's.
Since you have been infected for so long you really should get a biopsy to know for sure what is going on in your liver. I had one ultrasound a year since 2001, and they never even knew I had hep c. They told me everything looked OK, then I got a biopsy and I'm grade 2 stage 2. First and foremost you need to find a doctor that treats lots of Hep C patients because a LOT of doctors don't know their a** from a whole in the ground when it comes to treating this stuff... like that one that told you you had 10 more years. This stuff is serious and you deserve to be treated by somebody who has your best interest at heart.
Learn as much as you can so that you'll know when the doctor doesn't have a clue. Knowledge truly is power.
As Bill said, only 20% of people with hepatits C will develop cirrhosis and, at that point, only a certain percentage of those people will succumb to it. I also read where only 2 or 4% will develop liver carcinoma.
I have to question the knowledge and ethics of the doctor who told Wolfdreams that "you only have ten years." My guess is that particular doctor was not a hepatologist or even a doctor who had much expertise and training in infectitious diseases. Frankly, it was an irresponsible thing to say.
I'm getting geared up to treat. I will have my first liver biopsy the end of June. Up to this point, all my liver function tests, including a CT Scan, have indicated that my liver is functioning properly, however, on the most recent test, I tested positive for cryoglobulins in my blood (also, I know the gold standard of the real shape the liver is in comes from a biopsy). I went and got my medical records and discovered that my viral load was "Hep C RNA by PCR, Log (Iu/MI) - 4.7. My nurse practitioner recently told me that number meant that I had a high/low to low/average viral court and further stated that it was around 1,000,000. I'm still confused about it.
I was also told that if there is no fibrosis when I have the biopsy, that the doctors at the University of Utah feel that it will not be necessary to treat me. I strongly disagree and they base this on the fact that I have suffered from clinical depression in the past. If they don't treat me, I'll find a hepatologist who will -- there are other doctors in Utah aside from those at the U. Nonetheless, just the fact that I have cryoglobins in my blood appears to me to warrant treatment. Also, I am 56 years old -- do I have to wait until I am in my late 60s, when it may be discovered that I have cirrhosis and then I'll have to treat and the fact that I am older means that attaining SRV will be more difficult? The age factor does play its part.
Honestly, this may sound sick, but I hope I do have some fibrosis so I will be treated. I am a genotype 3a, female, slender, and my viral load appears to be in, according to my nurse practitioner, a high-low to low-average. Now seems like the time and I am ready. Also, I was told that there was a study they may want me in that is coming up.
I'm starting to have some uncomfortable feelings about the Gastroenterology Department at the U of U and why would they hold off treatment to put me in a study groups?
I'm confused -- about the cryoglobulins, maybe not being treated because of depression, and this study group. Also, living daily knowing that virus is in your body gets to be a real drag year after year.
Have others here on this site felt that they were getting the run around? My opinion of the medical profession is going south, day by day. I also feel like a farm animal instead of a human being.
You sound as confused as I do. All those medical terms are over my head. I agree with you about the medical profession. I honestly don't think they really know how to treat Hep C or they would of found a cure for it. I haven't seen a real liver doctor since my biospy and that's been a long time ago. But I do go and get a scan soon. I think this doctor is waiting to see how that turns out before referring me to a specialist. I've seen 2 hep specialist and even then they were confused about the disease. I have depression and I am bipolar with early stages of dementia and that doesn't help my hep. Stress is very hard on the system. I have to take all kinds of medicine which is probably isn't good. But I need it. I have had two treatments and neither worked so I wonder do I want to go through all this testing for them to say you're geno 1a and it wouldn't do you any good. Sometimes I think the worry is worse than the illness.
Hi again Wolfdreams,
Try to hang in there… HCV management is in a transitional phase right now, with new and rather exciting options in late stage testing. There is a new class of drugs called ‘protease inhibitors’ that show very good promise. One of these, Telaprevir, is tentatively scheduled for approval sometime next year. This new class of drugs will be used initially with the current interferon and ribavirin, but will hopefully increase efficacy of treatment quite a bit.
Talk with your doctor about ‘STAT-C’; Specifically Targeted Antiviral Therapy (for hep C). The two drugs closest to release are ‘Telaprevir’, by Vertex Pharmaceuticals and ‘Boceprevir’ by Schering-Plough Pharmaceuticals.
In clinical trials, these have increased the ‘cure’ rate from around 45% to over 75% in genotype 1 patients; pretty cool stuff here.
Thank you Bill, I've been looking into clinical trials. There are none in my area right now. But I'm on a list when there is one. Thanks for the encouragement.
I would seriously get some more advice about treating if you have had past episodes of clinical depression. I never had clinical depression until the treatment and it was so difficult to recover from this aspect post treatment. Over a year later I am still on medication for this. You need to carefully think about starting treatment without being fully aware of the possible side effects and how you are going to manage them. The side effects are awful and you really need to get your head around this possible side effect, one which doctors are really aware of and are particularly cautious with.
As I have seen various figures regarding progression of HCV posted before, I have put all the data here all in one place.
The natural history of hepatitis C infection, as gleaned from cohorts of posttransfusional patients. These posttransfusional cohorts have been most informative because they are able to pinpoint the exact time of infection and are, therefore, able to estimate fairly precisely the duration of disease.
After acute infection, the predilection for chronicity is remarkable:
~ 85% of patients progress to chronic infection, whereas only an elite 15% to perhaps 25% experience spontaneous resolution.
Among those with chronic HCV infection, a stable course is seen in approximately 80% of patients
20% will develop cirrhosis
Once the liver advances to cirrhosis, a variable course is still observed;
most patients will progress slowly,
but about 25% will experience liver failure
Approximately 1% will develop HCC per year.
The number of persons with HCC is increasing.
HCC is now the 5th most common cancer for men worldwide.
HCC is now the 8th most common cancer for women worldwide.
HCC is 3rd leading cause of cancer death worldwide.
In other words, among 100 patients with acute infection, approximately 4 will develop a highly undesirable clinical outcome.
NOTE: It is possible that investigators may find that this is only a minimum estimate of the number of patients who will experience these outcomes as the cohort now matures.
Serum HCV RNA levels do NOT correlate with the level of fibrosis.
HCV RNA levels do NOT appear to correlate well with the degree of inflammation.
Serum ALT levels ultimately represent an IMPERFECT MARKER of liver disease severity.
Patients with normal ALT levels tended to have a more mild degree of fibrosis, whereas patients with elevated ALT levels tended to have more advanced degrees of fibrosis. However, many patients with abnormal ALT levels had mild fibrosis or no fibrosis, and conversely, the presence of a normal ALT level could not exclude advanced forms of fibrosis or cirrhosis.
Liver biopsy remains the only truly accurate measurement of liver disease severity because it is the only test that can accurately assess both the severity of inflammation and the degree of fibrosis. Liver biopsy is also helpful in determining the risk for development of cirrhosis in the future; in other words, it is a useful prognostic tool.
Thank you for the clarification. I've been living with Hep C for a long time and I'm still living. Hopefully soon I will f ind out my stages.
hello all my name is mikey. im 30 amd g1a stage 2 i just found all this out like 2 mounts ago and the doc said this is how to treat it he did not tell me much more than that about anything but my virel was 128000 so all i know is what i see on things like this i just took my first shot and set of pills today and hav a bad headace and thats bout the worst of it for now lol i just now took my second ribo pill. but my point to this is im scared and dont know what to look foward to so any help of support will be greatly appreciated thank u verry much oh and sorry about the spelling im not the best speller thank you
My husband was test AB+ blood type to be indicated on his idendity card.
Susbequently about 8 yrs ago, he was tested B blood after a health screen?
Why is this so? Very confusing?