thanks a lot Eureka!
i've got already the first two shots, still need to have one more in december.
for now i've decided just to eat better, and to get more vitamines, milk thristle, omega, etc
i can't get rid of the virus, but at least i can try to support my liver for now...
Hi andy,
You got excellent advice above from a couple of very wise men. One thing about hcv diagnosis, management, and treatment: it begets anxiety and requires patience, but that's the norm. You'll find you'll be getting a lot of "hurry up and wait," but you can make the waiting "good" instead of "bad" by educating yourself and preparing for what's ahead.
The best thing is to learn what you can about hcv so you can be well-informed when it comes time to meet your GI. There is no cut-and-dried approach to hepatitis c, and deciding what's right for you should be a mutual decision between you and your health providers. Also, as mentioned, you can also seek out trials or other options if you find you want to treat and are unable to do so through the usual health care system
Welcome to the forum; my husband is a geno 1 like yourself, and has probably had the disease for over 40 years, but that's only an educated guess. Most people with hep c don't know when they got it, or how. When I sought out this site after my husband's diagnosis, I found invaluable information here, and I hope you do too. Best wishes to you on the journey ahead. ~eureka
PS. You should still get the Hep b vaccine if you didn't already.
And, you might find this website a good resource for future reference:
www.hcvadvocate.org
You’re welcome, Andy. In the meantime, the best thing you can do to prevent accelerated liver damage is to avoid alcohol… the two don’t mix. Feel free to continue reading and ask questions as they arise; we have quite a few Canadian members here that might be able to offer suggestions pertinent to your health care providers there.
Take good care—
Bill
thanks a lot Brent!
You and Bill have answered my question.
it looks like in canada, they don't approve the treatment for ppl with not advanced stages of desease.
i'm 41, not sure when i got it, don't remember the acute fase of it. have noticed that i feel like running on low batteries for a last couple of years, but was thinking that i'm just getting older...
last year i've had some persistent rushes and itching. was thinking about STI and have seen different doctors. they were not able to find anything, one of the doctors offered the test for hep A and B and the blood was tested for Hep C as well (nobody knows why)
so, i'm here now asking the questions...
thanks a lot for answering !
Andy
Hi again, Andy—
Yeah, I know, the waiting can test your patience. However, it’s a product of HCV taking a long time to progress into serious, irreversible damage.
Even if frequent testing revealed changes in those particular labs, I’m not sure what that would change in terms of disease management. Viral load will change spontaneously, and in the end, really doesn’t mean much until treatment commences; at that time, it’s used to gauge response to antiviral therapy.
More pertinent info can come from liver biopsy, if the specialist feels it’s indicated. Unlike many other viral infections, viral load isn’t particualy important; with HIV and Hep B, disease management is all about reducing viral load.
We watch HCV and make treatment decisions in response to liver fibrosis (scarring). If biopsy results indicate fibrosis progression, then treatment takes on urgency, obviously the more fibrosis present, the more urgent treatment becomes.
Fibrosis can be expressed on a scale of F0 thought F4, with F4 being synonymous with cirrhosis. Generally, treatment is optional if stage damage is limited to stage 2; less so if stage 3 is present.
Your GI will cover more of this with you, but this is a quick overview.
Again, good luck—
Bill
I’m feeling a little windy too Brent, but attributed it to the chiles rellenos last night!
OK Bill. I have to learn to type faster or quit being so windy! :-)
Welcome to the discussion group, Andy. I have HCV genotype 1 and have been through treatment and have been a member of this forum for a few years. I'll try to answer your questions as best I can.
Your tests in and of themselves are conclusive that you have chronic hepatitis C, and that you have genotype 1, which is the most common genotype in North America and also the most difficult to treat. But RELAX, this is not anything like a death sentence! Lots of us are still here kicking , many rid of the disease and some still treating.
Treatment difficulty arises from the fact that the course of treatment is relatively long, 48 weeks versus 24 weeks for some other types, and that the success rate is not very good, 50% versus 80-90% for other types. For this reason, and because the treatment course is difficult, expensive and not without risk; the decision to treat should not be taken lightly.
Your doctor has referred you to a gastroenterologist to get the additional information and help you make a good decision on how to proceed. Probably the most important thing will be to stage your disease. This means to determine disease progression or how much damage has been done to your liver. This is generally done by a needle biopsy procedure to take a sample of liver tissue for microscopic inspection. It sounds terrible but is really no big deal.
To simplify everything, you and your doctor will have to decide between options:
1. Treat with the existing drugs (pegylated interferon and Ribavirin) which will be a 48 week treatment with 50/50 odds of ridding your body of the virus.
2. Wait on FDA approval for new protease inhibitor drugs (Telaprevir or Bocepravir) to be admisistered in conjunction with the current drugs. One or both of these drugs should be avaiable early next year. They typically have a 6 month treatment period and have a significantly higher success rate for genotype 1 infections.
3. Try to enroll in a clinical trial with one of the drugs mentioned above, or others that are currently being studied. One of the benefits of a clinical trial is that the drugs are paid for by the providers. Also, at minimum, you should be guaranteed of getting the new drug or a placebo. Generally the placebo group will get the standard treatment with current drugs.
The key factor in this decision is in how far advanced your disease is. If your liver is already in advanced stages of the disease, then waiting very long might not be a good option, although the wait for Telaprevir and Bocepravir is starting to look like a very short wait. If your liver shows relatively little damage (fibrosis or scarring), then waiting for a drug that offers a shorter treatment and better success odds really makes sense. You may even want to wait for the next generation of drugs after these two protease inhibitor drugs. Many others are under study.
HCV generally progresses very slowly, especially in the first decade of disease. if you know when you likely contracted the disease, you might factor that into the decision.
I think the most important thing is that you get a doctor who specializes and is experienced in treatment of HCV. Preferably this would be a hepatologist. Some GI doctors don't work that much with HCV and are not as current on the newest treatment options and techniques. Mostly he needs to be someone in whom you can put your trust and communicate with clearly.
I hope you'll keep posting and getting information here. There are lots of knowledgable people here in situations similar to yours (several in Canada). I hope this helps you and that you will learn a lot more about the disease we have.
Best of luck,
Brent
hi Bill,
thanks a lot for answering!
i will wait for appt with a GI, anyway i don't have other choice.
honestly, i'm not really sure if it is good or bad that i have to wait for an appt until next year.
maybe will try to get tested in december or january, just to see how it changes...
thanks again
Andy
Hi Andy,
Welcome to the discussion group. Really the only thing that can be ascertained by the labs you provided is that you do indeed have HCV.
Your viral load could also be expressed numerically as 1,620,000; this is a very average, run of the mill viral load, but it’s important to know this doesn’t necessarily correlate with disease progression.
Genotype 1 is the most common genotype is North America; however, it’s also the least responsive to current treatment drugs.
The liver enzyme result ‘ALT 71’ is consistent with chronic HCV infection; not much to be concerned about with that result; this number should eventually normalize if or when you are successful with antiviral therapy.
Your GI doctor will most likely suggest periodic testing; perhaps at six month intervals, if you choose to postpone therapy now. Much more frequent testing is necessary if you decide to undergo treatment, though.
Feel free to ask questions as they arise, and good luck—
Bill