This Web Site is committed to the memory of Janis Morrow.
Have You Been Just Diagnosed?
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.
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 :
Page Two :
Detection of HCV RNA Using Sensitive Test Can Help Guide Therapy
Page Three:
Managing Hepatitis C - The Decision to Treat
Page Four:
Sustained viral responders tell how they beat hepatitis C
EASL: 5 Year Followup of SVRs with PegIntron/RBV-98% Continued SVR5 -
Page Five:
Complications of HCV, Related Conditions and Symptoms
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
15 Tips for Managing Interferon-Ribavirin Side Effects
Doing your Pre-Disability Homework
Articles of Interest found elsewhere on HCV
Adjustment of Treatment Duration Based on Early Response
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
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
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
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