other HCV Information

HISTORY OF HCV

GLOSSARY/ABBREVIATIONS

LIVER FUNCTIONS

QUESTIONS ABOUT HCV

EXTRAHEPATIC CONDITIONS

SYMPTOMS

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SEXUAL TRANSMISSION

HCV BLOOD TESTS/LABS

LABS ON TREATMENT

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ALTERNATIVE TO BIOPSY

STILL NEED A BIOPSY ?

ON BIOPSY WHAT DOES THE STAGE MEAN AND WHAT DOES THE GRADE ME ?

STAGES/LIVER DISEASE

FIBROSIS

CIRRHOSIS

TRANSPLANTS

LIVER CANCER

GENOTYPES

VIRAL LOAD

PEGASYS/ PEGINTRON

INFERGEN

HELP/SIDE EFFECTS

DRUG INTERACTIONS

NUTRITION  & HCV

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FIRST SHOT

INTERVIEWS

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This Web Site is committed to the memory of Janis Morrow.

Human liver

Have You Been Just Diagnosed?

Medical Glossary

What are the chances of persons with HCV infection developing long term infection, chronic liver disease, cirrhosis, liver cancer, or dying as a result of hepatitis C?

Of every 100 persons infected with HCV about:

  • 55%-85% of persons may develop long-term infection

  • 70 persons may develop chronic liver disease

  • 5-20 persons may develop cirrhosis over a period of 20 to 30 years

  • 1%-5% of persons may die from the consequences of long term infection (liver cancer or cirrhosis)

What is the treatment for chronic hepatitis C?
Combination therapy with pegylated interferon and ribavirin is the treatment of choice resulting in sustained response rates of 40%-80%.

(up to 50% for patients infected with the most common genotype found in the U.S. [genotype 1] and up to 80% for patients infected with genotypes 2 or 3).

 Interferon monotherapy is generally reserved for patients in whom ribavirin is contraindicated. Ribavirin, when used alone, does not work. Combination therapy using interferon and ribavirin is now FDA approved for the use in children aged 3-17 years.

http://hivandhepatitis.com

Click this link:

To learn about HCV emerging options also why is it so important to treat Hepatitis Now. 

Guidelines for the Management of Hepatitis C Virus Infection


 Page One :

Newly Diagnosed

Who do we Tell ? 

What are my legal rights?


Page Two :

Myths and Facts

The First Blood Tests

Hepatitis C the Basics

Detection of HCV RNA Using Sensitive Test Can Help Guide Therapy


Page Three:

 Managing Hepatitis C - The Decision to Treat


Page Four:

Who should be Treated?

Treatment for Hepatitis C

Is Hepatitis C Curable?

Sustained viral responders tell how they beat hepatitis C

EASL: 5 Year Followup of SVRs with PegIntron/RBV-98% Continued SVR5 -


Page Five:

Patient Assistance Programs

Complications of HCV, Related Conditions and Symptoms

Dietary and Lifestyle Advice

Living with Hepatitis C: Is an Occasional Drink Okay?

 

Page Six:

Hepatitis C -- Current State of the Art and Future Directions


Getting ready for treatment ?

Before Starting Therapy your doctor may request the following:

1- Eye exam  ( Retinal Toxicity and Combination Therapy)

2- Electrocardiogram (EKG) if you are over 50 years of age ( I was 45 when I treated and my physician ordered one, I had no heart problems prior to treating still I had an EKG)

3-For women..pregnancy test , REBETOL CAPSULES AND ORAL SOLUTION MAY CAUSE BIRTH DEFECTS AND/OR DEATH OF THE EXPOSED FETUS. EXTREME CARE MUST BE TAKEN TO AVOID PREGNANCY IN FEMALE PATIENTS AND IN FEMALE PARTNERS OF MALE PATIENTS.

4-For your own benefit see your dentist before starting treatment and if you need any work done you may want to get it done before hand.

5- Your doctor will be doing baseline blood work before treatment and will continue during treatment :

PCR should be standard procedure at  baseline , 4 weeks, 12 weeks,  24 weeks, 36 weeks, 48 weeks,  (f/u) follow up at 4 weeks,  12 weeks, 24 weeks and one year.

 

Further Reading: http://www.hepcchallenge.org/choices/allopathic2.htm

 

What You Need to Know Regarding Therapy

There are a number of things you and your doctor need to know about your situation before you decide to begin therapy and at various stages of treatment once it has begun. Most of this information can only be gained through testing.

Before Starting Therapy

Before therapy begins, you will need to have the following tests, and discuss these aspects of your medical history.

    viral genotype

    viral load

    liver biopsy grade (inflammation/necrosis) and stage (fibrosis)

    hemoglobin level

    white blood cell count with neutrophil count

    platelet count

    cryoglobulin level

    thyroid stimulating hormone (TSH) level to check thyroid status

    electrocardiogram (EKG) if you are over 50 years of age

    presence or absence of other liver diseases (for example, hepatitis B, alcoholic liver disease, etc.), autoimmune diseases, heart or kidney disease, seizure disorder, diabetes, and/or severe lung disease

    presence or history of any psychiatric disorder, especially depression or suicidal thoughts; psychiatric consultation may be required if one of these is present

    pregnancy or ability to become pregnant and the use of appropriate means to prevent pregnancy

During Therapy

During therapy, the following tests need to be done.

    complete blood count (CBC) and differential cell count (neutrophils) at 2, 4, 8, and 12 weeks, and then every 4 to 8 weeks until therapy is completed

    ALT levels are usually checked at the same time points as your CBC

    TSH (thyroid stimulating hormone) at 12, 24, and 48 weeks

    a standardized test for depression (for example, Beck's Inventory or the Hospital Anxiety/Depression Index) as well as a clinical evaluation for depression at the time of each visit to screen for the development of psychological problems

You must eliminate all alcohol and strive to take more than 80% of your prescribed interferon and ribavirin doses more than 80% of the time in order to have the best chance of achieving a durable response.

Please Read this Update about the 80/80 rule :

Reminder about Adherence First 12wks 
 

Great Links to Check out

HCV Tests :

http://www.hepcchallenge.org/choices/labs.htm

Treatment Choices :

HealthWise – Preparing for HCV Treatment: Tips for the Journey:

Part 3 of a Three-Part Series on Health Self-Advocacy

Injection Guide

http://www.janis7hepc.com/treatment_help.htm#h

Help With Side Effects

15 Tips for Managing Interferon-Ribavirin Side Effects

Interferon and Ribavirin

DDW 2007 Highlights: Part 2

Doing your Pre-Disability Homework

Articles of Interest found elsewhere on HCV

SVR and Disease Progression

Adjustment of Treatment Duration Based on Early Response

IDEAL Trial Results

Non-invasive Assessment of Liver Fibrosis in Patients with Hepatitis C

Impact of Chronic Hepatitis C and Psychiatric Illness on Quality of Life

FDA Warns About Eating Raw Wash. Oysters

New: HCV Negative: A Guide for Healthy Living without HCV

Beliefs about Disease Severity and Lifestyle Changes among Patients with Chronic Hepatitis C
 

Impact of Alcohol Use on Hepatitis C Treatment Outcomes and Quality of Life
 

3 New Combination Therapies

Talking to Your Children About Hepatitis C

Impact of Obesity on Hepatitis C and Treatment of HCV

Reader’s Feedback: Treatment Side Effects and Their Management

Hepatitis C: Current Standards of Care and Future Perspectives

Getting the Most from Your Health Insurance

A Guide to HCV Disclosure

Smoking May Worsen Liver Fibrosis in Patients with Hepatitis C

Long-term Consequences of HCV Infection

Natural History of Chronic Hepatitis C in Patients Age 65 and Older
 

 What are the chances of persons with HCV infection developing long term infection, chronic liver disease, cirrhosis, liver cancer, or dying as a result of hepatitis C?


 
Do medical conditions outside the liver occur in persons with chronic hepatitis C?

An Open Letter To Those Without HCV

Having Hepatitis C means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disease or the disability the treatment causes and their effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand.....

These are the things that I would like you to understand about me before you judge me.

Please understand that HCV and its treatment doesn’t mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.

Please understand that HCV and its treatment are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't scold me when I'm ill by saying, "But you did it before!” If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. HCV (and if on treatment) may cause a secondary/reactive depression but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it that, I would.

Please understand that if I say I have to leave/sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. HCV does not forgive their victims easily.

Please understand that I can't spend all of my energy trying to get well from my chronic illness. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness and its treatment.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had many people suggest one at one point or another. At first I tried to research or try them, but then I realized that I was using up so much energy looking for answers that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better might not happen at all. People with Chronic HCV have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

                But most importantly, I need you to understand me.               

 

Adapted Anne with permission from "An Open Letter To Those Without CFS/
Fibro" by Ricky Buchanan (aka Bek Oberin). Original is at:

 http://notdoneliving.net/foothold/openletter/

 

10 top tips - hepatitis C

26 Nov 07

GP Dr Clare Gerada gives her hints on managing hep C in primary care

1
Hepatitis C infection is common. It is estimated that about 200,000 to 400,000 people in the UK are infected. Between eight and 18 people are likely to be hep C positive in an average practice with a list of 1,800 – more in areas with a lot of substance misuse. Most of these cases will be unknown to the doctor and unknown to the patient.

2
Untreated, the cost to the NHS will be up to £8bn over the next 30 years. There will be increasing numbers of people with late complications such as cirrhosis, liver failure and liver cancers and increasing numbers needing liver transplants. Early treatment is often successful but only 1-2% of infected people in the UK receive NICE-approved treatments.

3
Think of hep C in any patient with even mildly deranged LFTs. Hep C causes slowly progressive, often asymptomatic liver disease. Most people who become infected are unaware of it at the time. Some people may briefly feel unwell, or may have nausea and vomiting and, rarely, jaundice. Many with chronic hep C infection will have no symptoms, while others will feel unwell to varying degrees. Most people will remain well and without symptoms for a number of years and this makes the infection difficult to recognise. Disease progression and severity is very variable and patients may not become symptomatic until their liver disease is advanced. Symptoms, though not common, may include muscle aches and a high temperature, mild to severe fatigue, nausea, loss of appetite, weight loss, depression or anxiety, pain or discomfort in the liver, jaundice, poor memory or concentration and alcohol intolerance.

4
About 25% of patients with hep C will naturally clear the virus with no treatment. Of the remaining 75%: • some will remain asymptomatic for life
• many will develop symptomatic or asymptomatic mild or moderate liver damage
• most will progress to cirrhosis over 20 to 40 years
• about 5% per year will develop liver failure or hepatocellular carcinoma.

5
Hep C infection is curable. The chance of treatment completely clearing the virus is maximised by early diagnosis and early referral. So it is very important that doctors are able to identify and offer testing to anyone who could be considered at current or past risk – possibly during a new patient health check.

6
GPs can also help reduce further risks and improve the chances that treatment can be successful.
• Offer harm reduction advice – remember that injecting equipment includes needles, syringes, spoons, filters.
• Provide brief intervention for heavy drinkers and/or alcohol detoxification for dependent drinkers.
• Provide smoking cessation products – smoking is an independent risk factor for hep C inflammation in patients with chronic infection.
• Provide weight reduction advice – body mass index above 25 has been associated with more rapid disease progression.

7
Initial testing should include an antibody test and a test for current
circulating virus.

Blood needs to be taken for an initial antibody blood test and this will indicate whether a person has ever been infected with hep C. About 15-20% of people who become infected will clear the virus at the acute stage but these will still have positive antibody results. A polymerase chain reaction (PCR) test will identify current circulating virus. More sophisticated PCR tests can then identify the viral load and genotype. As the mere act of taking blood may be difficult in many former and current drug misusers, some labs allow for two samples to be sent at the same time, the first asking for hep C test and the second requesting, if hep C positive, PCR and genotype testing.

8
Refer early. Patients who are antibody positive but PCR negative do not need specialist treatment but need counselling about lifestyle – either in primary or secondary care. All patients who are PCR positive need further assessment and investigation, which usually means specialist referral to a hepatologist, gastroenterologist or infectious disease specialist. NICE guidelines recommend early treatment.

9
Treatment can clear the virus in 40-80% of people. The current treatment is combination therapy with pegylated interferon and ribavirin. Primary care can continue to play an important role, offering support through the treatment process.

10
Offer practical help during treatment. Help can be given to manage side-effects – paracetamol for pyrexia, anti-emetics if nauseated and moisturisers and steroid cream for itchy skin. Also useful are harm-reduction information, support for drug dependency and monitoring of mental health, especially depression.

The RCGP has recently produced guidance for the prevention, testing, treatment and management of hep C in primary care (May 2007), available at: www.smmgp.org.uk and www.rcgp.org.uk

Dr Clare Gerada is a GP in south Londonand a member of the RCGP sex, drugs and HIV working group

http://www.pulsetoday.co.uk/story.asp?sectioncode=18&storycode=4116139&c=1

 

Common Hepatitis C Acronyms

AHC: Acute Hepatitis C
BMI: Body Mass Index
Bx: Biopsy
CHC: Chronic Hepatitis C
DNA: DeoxyriboNucleic Acid
Dx: Diagnosis
EOT: End of Treatment
EVC: Early Virological Clearance (Aviremic - HCV RNA Negative at Week 12)
EVR: Early Virological Response (12 Week PCR - UND or >2 Log Drop)
G or GT: Genotype
GI: Gastroenterologist
HCV or Hep C: Hepatitis C Virus
HVL: High Viral Load (¡Ý400,000 IU) (¡Ý600,000 IU) (¡Ý800,000 IU)
Hx: History
ITT: Intent to Treat
IU: International Unit (1 IU = 2.5 VL Copies apx )
LVL: Low Viral Load (<400,000 IU)
PCR: Polymerase Chain Reaction
RNA: RiboNucleic Acid
RT-PCR quantitative: using Reverse Transcription-Polymerase Chain Reaction to count how many virus are in blood
RT-PCR qualitative: a "positive" or "negative" using Reverse Transcription-Polymerase Chain Reaction to see if there are at least 50 IU/ml viruses detected in blood
RVR: Rapid Virological Response (4 Week PCR ¨C UND )
Rx: Prescription
SOC: Standard of Care
SVR: Sustained Virological Response (UND 6 Months post TX end)
Sx: Symptoms/Side Effects
TMA: Transcription Mediated Amplification
Tx: Treatment, Therapy (can also mean Transplant)
UND: Undetectable Viral Load
VL: Viral Load
VR: Virological Response
WHR: Waist to Hip Ratio

More Acronyms

AFP: Alpha-FetoProtein
ALP: Alkaline Phosphatase (Alk Phos)
ALT: Alanine Aminotransferase
AST: Aspartate Aminotransferase
BID: Twice Daily Dosage (from Latin "bis in die"
CBC: Complete Blood Count (almost the same as FBC)
CIFN: Consensus Interferon (Infergen/Alphacon)
EIA: Enzyme ImmunoAssay
ELISA: Enzyme-Linked ImmunoSorbent Assay
EPO: Erythropoietin Epoetin alfa (Epogen/Procrit), Darbepoetin alfa (Aranesp)
ESA:: Erythropoiesis Stimulating Agent
ESLD: End-Stage Liver Disease
FBC: Full Blood Count
FDR: Fixed Dose Ribavirin
GCSF: Granulocyte Colony Stimulating Factor (Neupogen)
GGT:: Gamma Glutamyl Transpeptidase
HCC: HepatoCellular Carcinoma (Liver Cancer)
HDL: High Density Lipoproteins (Good Cholesterol)
HGB: Hemoglobin
IFN: Interferon (Alpha 2a/2b)
IU: International Unit 1 IU (2.5 VL Copies apx)
lakh: (100,000 from Indian English)
LDH: Lactate Dehydrogenase
LDL: Low Density Lipoproteins (Bad Cholesterol)
LDR: Low Dose Ribavirin (Same as FDR)
LFT: Liver Function Test
LLN: Lower Limit of Normal
MCV: Mean Corpuscular Volume
NAFLD: Non Alcoholic Fatty Liver Disease (Steatosis)
NASH: Non Alcoholic SteatoHepatitis
Neup: Neupogen
NPIA: Non-Pegylated Interferon Alpha
PEG: PolyEthylene Glycol
PegIFN: Pegylated Interferon Alpha (2a/2b)
QW: Once a Week (from Latin quaque)
RBV/RVN: Ribavirin
RCC: Red Cell Count
RIBA: Recombinant ImmunoBlot Assay
Riba: Ribavirin
SC: Subcutaneous (Beneath or Under the skin)
SGOT: AST was called Serum Glutamic Oxaloacetic Transaminase
SGPT: ALT was called Serum Glutamic Pyruvic Transaminase
S-IFN: Standard Interferon (same as NPIA)
TG: Triglycerides (type of fat found in blood)
TIW: Three Injections Weekly (Tri Weekly, Three Times a Week, Thrice Weekly)
TMA: Transcription Mediated Amplification
TSH: Thyroid stimulating hormone (Also called: Thyrotropin)
ULN: Upper Limit of Normal
VLDL: Very Low Density Lipoproteins (Bad Cholesterol)
WBD: Weight Based Dose
WBR: Weight Based Ribavirin
WCC: White Cell Count
WHR: Waist to Hip Ratio 

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

 

The Hepatitis Help Line Call Center at Hep C Connection

1 800 522 HEPC

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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