HELP/ CONFUSSED SCARED

[patchyskin]

I WAS DIAG. W HEP. C ABOUT 8 YRS AGO HAVE ALWAYS HAD WHAT WAS CONSIDERED A LOW V/LOAD
THEN STARTED TACKINK EMBREL FOR PSORACTIC ARTHRITIS ABOUT 3MO AGO. NOW V/LOAD IS 12100000
WHAT DOES TJIS MEAN? AM I IN SERIOUS CONDITION? AM I GOING TO DIE ? WHAT DO I DO NOW DOES THIS REQUIRE IMMEDIATE ACTION? DO I NEED TO PUT ALL PLANS ASIDE AND GET TREATMENT PRONTO!!??

[joyce889]

hi..i was just diagnosed that i have reactive hep c antibodies. got my hcv rna test yesterday and it's <15IU/ml. my alt is 31. do i have to retake my hcv rna test? thanks a lot..

[Diane12855]

I had depression issues after my first son... bad issues, so my doctor started me on anti depressants 2 weeks before my treatment started. I'm glad he did! I'm only going on shot #5 so I don't know how bad things will get in the future, but so far... no depression.

I think pre-treating would be the way to go for you too since this has been an issue in the past.

Diane

[Deb9991]

Again Bill, thanks so much for the valuable information that you have given me.  I will also check out the web site you indicated and also check out more recent posts.  

I am going through the Gastroenterology/Hepatology Department at the University of Utah and at this point, I have only talked to a nurse practitioner and taken all the liver function tests.  She is a smart lady, but by no means a hepatologist.  After I have the biopsy in June, I will then get to talk to the specialist and start treatments.  When I asked her what 4.7 (log) viral load meant, she had a blank look on her face and quickly said that it was a medium viral load.  I knew at that point she really didn't know what she was talking about.  

I'm glad to hear you didn't suffer much of the blues.  Depression can be a horrible curse for some people and that is my greatest fear.  But, as you said, everyone is different and I guess I won't know until I start the treatment.  I think what is bothering me so much now is that I have to wait for the biopsy -- and I'm eager to get on with it!  The earliest I can get the biopsy is the end of June (Utah must have a lot of people with liver issues), and it is their rules and regulations that I can't start treatment before the biopsy results are known.

Anyway, continue on answering all the questions people have for you.  You are a great source of viable information and courage.  You've got a big heart too -- I just know it.  You've really helped me and given me a lot of information and courage.  When I start my treatments, I know that you will be here for me as you have been for others.

Deb

[Bill1954]

Hi Deb—

You tagged onto a post that was started nearly three months ago; the posters might not see your comments here. If you have like you can always start a new thread by scrolling to the top of the page and clicking on the green ‘post a question’ button. You’ll probably get more attention to your question that way.

A viral load expressed as ‘LOG 4.7’ translates to a viral load of roughly 50,000 (IU/mL). The LOG is another way of expressing large numbers using logarithms. This is a low viral load, by the way. Low HCV viral load is defined as <400,000 IU/mL.

For more on viral load and how it’s expressed, take a look at the following page:

http://janis7hepc.com/Viral_Loads.htm

Some patients tend to deal with depression, anger, anxiety, etc as a result of interferon therapy. It’s common for doctors to initiate an antidepressant prophilactically; rather than wait until emotional issues develop. Not all of us are affected this way; I personally did reasonably well throughout, only to get the blues shortly after I stopped. I returned to normal a couple of months later; and this only happened after my second treatment.

Best of luck—

Bill

[Deb9991]

What I have learned is viral load has nothing to do with disease progression.  Everything you have read on this post is correct.  

I am going to treat the first of July after I have a liver biopsy.  I've had hep C for 19 years.  In my opinion, I believe people should treat before something goes wrong.  As I have said in other posts, why wait until you have to and why go through the mental torment of carrying this burden around with you mentally?  I wish I had treated before now and deeply regret not doing so, however, my doctors always told me that if there was nothing wrong, then there is no reason to treat.  I believe they are starting to take a different approach.  

I have a question to ask.  I also suffer from depression and I have for most of my life.  I am under the care of a good psychiatrist.  I was disqualified from a study because of depression.  Anyway, I will start treatment the first part of July and I have to tell you all that I am afraid -- not so much of the physical effects, but of what I will go through mentally.  What have been your experiences with the mental aspect of treatment?  

Also, with regard to my viral load, I was given a log number of 4.7.  Does anyone know what that means?  Does it mean 4,700,000 or 470,000?  I'm confused.  I called my doctor's office and talked with someone who said that it was a log number, which didn't tell me much.  My nurse practitioner told me I was in the mid-range of viral load.  What is considered mid range?  

Good luck to all of you and if anyone can help me out with my questions, I would greatly appreciate it.

Deb

[patchyskin]

thanks for the key message! i will c a doctor this pm

[Bill1028]

The above could be a little intimidating, but the key message is:

“On the other hand, the viral load in chronic hepatitis C has nothing to do with prognosis,” Dr. Snyder continues. “There is no correlation between the level of virus and the state of the disease.

[patchyskin]

AS FAR AS RELIEF FROM THE EMBREL IT WSA MINIMAL AND ACTUALLY HAD AN INCREASE IN SKIN LESIONS W/TREATMENT
               THANKS FOR INFO

[Bill1028]

What do viral loads mean?

By Tamra B. Orr/Jan 2009

Most of us carry around a long list of important numbers in our heads, ready to be pulled out whenever they are needed. We remember our social security numbers, telephone numbers, addresses and zip codes, birth dates and others such as checking account numbers or lock combinations. For patients living with chronic hepatitis B or C, there is another number that joins the ranks: their viral load. It’s a number they usually learn soon after they are diagnosed with the condition, and over the years, although the number typically goes up and down, it remains an important one to remember.

Simply put, a viral load is the amount of virus found in each milliliter (mL) of a person’s blood. “It is reported as copies/mL, or more recently as IU/mL, or international units per milliliter,” explains Dr. Paul Thuluvath, director of the Institute of Digestive Health and Liver Disease at Mercy Medical Center in Baltimore. Converting IU/mL to copies /mL is complicated because several different assays can be used to measure viral load. According to Hepatitis C Support Project’s “HCSP Fact Sheet,” 1 IU can equal between 0.9 copies and 5 copies of the hepatitis C virus, depending on which test was used.

“Most labs give both values, and in the future it may be given only as IU/mL,” says Dr. Philip Rosenthal, medical director of the pediatric liver transplant program at University of California, San Francisco. “Viral load refers to the number of viral particles or amount actually present in the blood or other body fluids. Obviously, the more viral particles present in the blood or fluid, the more likely the virus can be spread to another person.”  

The number does not stay constant, however. “It fluctuates and is not considered absolute,” says Dr. Silvia Degli-Esposti, hepatologist and gastroenterologist at the perinatal hepatitis program at the Women and Infants Hospital in Providence, R.I.

One of the first steps following the initial diagnosis of either hepatitis B or C is establishing a beginning viral load. It is typically done through specific blood tests known as quantitative HCV RNA or HBV DNA. This number helps determine what – if anything – is going to happen next.

Knowing the numbers

“Viral load is a measure of the severity of the viral infections,” says Dr. Rosenthal. “The higher the viral load, the more virus that is present and the more chance for the virus to cause harm or injury.

”For those with HBV, knowing the viral load is an essential element in deciding on treatment strategy. An HBV patient’s viral load “could be billions or many millions,” says Dr. Thuluvath. “When it is less than 10,000 IU/mL, the standard practice is not to treat it. We monitor the levels during treatment. Viral loads in HCV could be many thousands or millions.” Treatment for either virus is assessed by a decrease in viral loads; it’s a key to judging overall treatment response – hopefully all the way to where the virus is undetectable.The viral loads in hepatitis B and C are different. Dr. Ned Snyder, chief of clinical gastroenterology and hepatology at the University of Texas Medical Branch in Galveston, explains, “In hepatitis B, there is a close correlation between the height of the viral load and prognosis. The higher the viral load, the more likely one is to develop cirrhosis or hepatocellular carcinoma (primary liver cancer). Also there are minimal levels of the virus below which treatment in most cases is not necessary.

“On the other hand, the viral load in chronic hepatitis C has nothing to do with prognosis,” Dr. Snyder continues. “There is no correlation between the level of virus and the state of the disease.

One may have 100,000 IUs and cirrhosis, and someone with 5 million IUs may have minimal disease. In hepatitis C, the viral load is primarily useful in guiding treatment. The goal of treatment is to make the viral load undetectable and have it remain undetectable after treatment is completed.” The viral load in hepatitis C has a direct connection to treatment success. Research indicates that for a patient with a high hepatitis C viral load, pegylated interferon and ribavirin are only about 40 percent effective, while those with low viral loads have an effectiveness rate closer to 56 percent. The success of various treatments also depends on other factors including the amount of liver damage already present when the diagnosis is made and how long the person has had the virus, as well as the person’s weight, age and ethnicity. While liver damage can be significantly influenced by lifestyle choices and diet, the viral load for hepatitis B and C patients is not. “Unfortunately, there is not much patients can do themselves to alter their viral load,” Dr. Snyder says. “Milk thistle and other herbs have not been shown to make a difference.” So although they do not change the viral load, Dr. Rosenthal reminds patients to avoid “medications, herbs or drugs such as alcohol that are known to be hepatotoxic” because they increase the damage being done to the liver.

Other tips

What other information should patients and their families know about viral load? Drs. Rosenthal, Snyder, Thuluvath and Degli-Esposti suggest the following:

For either virus, the higher the viral load, the more likely the virus can be transmitted to another person.
Viral loads should always decrease with appropriate treatment.
It is not useful to monitor hepatitis C viral loads when you are not receiving any treatment.
High viral loads do not necessarily indicate severe disease in hepatitis C.
The HCV RNA or viral load will vary significantly from month to month in patients not receiving interferon/ribavirin, but this does not mean anything.
Do not panic if you hear the viral load is in six or seven figures as this is the usual range with hepatitis C.
In hepatitis B, high viral loads may predispose patients to liver cancer even in the absence of cirrhosis.
In adults with chronic hepatitis B, there is some evidence to suggest that the longer the viral load is high, the more the risk of development of hepatocellular carcinoma.
The field of hepatitis B has changed markedly in recent years, and many generalist physicians are not aware of some of the new concepts and treatments in hepatitis B.
Viral loads can be complicated and confusing for many of us. Dr. Degli-Esposti says, “Explaining viral loads to patients is one of the hardest things I do. They rarely ever understand exactly what I am trying to convey to them.” Instead, our viral load is just one more number we tuck away on our individual internal lists and recall whenever it’s time for a new test. But understanding the significance of that number can help us make informed treatment decisions.

http://www.liverhealthtoday.org/viewarticle.cfm?aid=392

[Bill1954]

Enbrel acts as a  immunosuppressant, (it is a TNF inhibitor) so an increase in viral load isn’t necessarily surprising. However, high Hepatitis C viral loads aren’t always an indicator of disease severity. Can you talk with your rheumy about substituting a different RA drug, with a different action? Try to get your reumy talking to your GI or hepatologist, and let them come up with a solution. I don’t believe this is cause for panic, but it should probably be addressed by your doctors. Did you get any relief from the Enbrel?

Good luck—

Bill

[FlGuy]

I forget who it was, but someone in the forum did the HCV treatment (PegInterferon and riabvirin) while on treatment, with Embrel,  for some auto-immune disorder.  I recall that it was a tricky balance.  Tricky because Embrel somewhat reduces/suppresses, or placates, the immune sysytem while the intent of PegInterferon is to kick the immune system into high gear.  Before you ponder undertaking both, get some sound medical advice.  And if you do proceed with both maybe enlist a hematoligist for guidance.

[patchyskin]

THANKS NYGIRL7 I GUESS I AM CONFUSSED ABOUT JUST WHAT 12100000V/L MEANS NOBODY SEEMS TO WANT TO SAY. I DID HAVE A BIOPSY ABOUT 7 MO. AGO AND WAS TOLD VERYTHING LOOKED GOOD NOTTO WORRY YEA RIGHT!!

[nygirl7]

Actually I think Enbrel is one of the liver safe drugs out there. And it wouldn't have anything to do with your viral load rising - that happens up and down cause it's a virus. If it were an unsafe liver medication most likely it would raise your liver enzymes greatly but not your VL.

To find out if you need to treat get a biopsy and see how much liver fibrosis you have and also monitoring your liver enzymes can be of use sometimes but the biopsy is the best way to determine how much liver damage you already have.