Newly Diagnosed -Where do you begin to search for hepatitis C information on the Internet?

When diagnosed with a serious disease such as hepatitis C, it's normal to feel completely out of  control. Life as you know it has changed.

The initial diagnosis is nothing less then traumatic, what ensues is a unexpected life adjustment, but not before going through several challenging phases. The first phase for me was shock, then came the denial, fear, and eventually acceptance. Not until the latter was achieved was I able to begin my journey to wellness and regain back some control over my life.

After testing positive for HCV most of us imagine the worst-case scenario, which is easily validated after spending a few hours online pouring over conflicting research. Although, some of the information provided to us is reliable and up to date; some is not. Today, I hope to point the newly diagnosed in the right direction by providing a few substantial links to relevant HCV information.

Where do you begin to search for hepatitis C information on the Internet?
Knowing the buzz words or the key words are essential for a successful search. Let us begin at the beginning - with the natural history of hepatitis C.

*Reference applies to HCV-positive untreated population.  

So What Will I Find Out About Hepatitis C?
The Natural History Of Hepatitis C - Topics will include the following

1- The acute phase of hepatitis C - Acute hepatitis C infection involves short-term illness that happens within the first six months after a person has been exposed to the HCV virus.

2-What spontaneous viral clearance means- Approximately 25% of patients acutely infected with HCV will clear the virus spontaneously, and 70-85% of patients will develop chronic infection.

3- All about chronic hepatitis C - A persistent hepatitis C infection with periodic evidence of HCV RNA in the blood for at least 6 months.

4-  Symptoms

5-Extrahepatic conditions - Conditions outside the liver associated with Hepatitis C infection. Several extrahepatic complications have been associated with HCV including hematologic and dermatologic diseases as well as autoimmune and kidney diseases.

6- Finally, information on disease progression and how host factors influence the progression - The rate of disease progression in hepatitis C infection is influenced by both virus- and host  

A Few Links To Get You Started
Review
2006 - The Natural History of Hepatitis C Virus (HCV) Infection

Natural History Of Hepatitis C
2013 - A collection of articles and research 

What About Liver Health, Support and Treatment?
Provided below are helpful links to additional information on HCV including: Testing, disease progression, liver health, diet, transmission, books, videos, treatment with current direct-acting antivirals and investigational antivirals, lastly support.

What  to do with a positive hep C test 
 Lynn Rapsilber, MSN, ANP-BC, APRN
September 13, 2012
HCV antibody testing is sensitive and inexpensive. Anti-HCV screening assays include the enzyme immunoassay (EIA) or the enhanced chemiluminescence immunoassay (CIA). Positive results are reportable and should be confirmed with a repeat test. The recombinant immnunoblot assay (RIBA), a more specific serologic anti-HCV assay, is no longer used. Once the antibody test is positive, HCV-polymerase chain reaction (PCR) RNA test measures how much HCV is in the bloodstream. 

Continue reading........ 

May 20, 2012
Hepatitis C Testing- the Fine Print
A positive Hep C Antibody test (the screening test) cannot tell you how long you have been infected. More testing is now required. The next step will be to have a different blood test that measures "viral load"- actually looking for the amount of Hep C virus present in your system. Other blood tests will measure your liver "function" to see if it looks inflamed. Your doctor may also test to determine the subtype of Hep C in order to better advise you regarding the potential response to therapy. By the way, All positive tests for Hep C will be reported to the health department. This should not to make you paranoid, as your insurance company will obviously know as well, but simply something to note.
Continue reading.. 

The Disease 
Liver disease in people with hepatitis C affects everyone differently, while it may progress slowly in most people, it can also progress quickly in others. A few host factors including duration of infection, co-infection with HBV or HIV, age, race, gender, genotype, alcohol use, smoking, other underlying disease (diabetes), all have an impact on liver disease progression.

Beyond the Basic: Understanding Hepatitis C

Clinical Features of Hepatitis C Virus Carriers With Persistently Normal Alanine Aminotransferase Levels

Conditions outside the liver associated with Hepatitis C infection

The High Comorbidity Burden of the Hepatitis C Virus Infected Population in the United States
Chronic hepatitis C (HCV) disease can be complicated with comorbid conditions that may impact treatment eligibility and outcomes.  The aim of the study was to systematically review comorbidities and symptoms in an HCV infected population, specifically assessing  comorbidities associated with HCV anti-viral treatment and disease, as well as comparing comorbidities between an HCV infected  and uninfected control  population

Liver Health - 2013

Meal consumption confounds liver stiffness measurements in patients with chronic HCV

Hepatitis C-Moderate, excessive or heavy alcohol consumption:each is significantly associated with increased mortality

Coffee and Liver Disease

Consumption of coffee associated with reduced risk of liver cancer: a meta-analysis

Some Omega-3 Oils Better Than Others for Protection Against Liver Disease

Binge drinking can dramatically amplify damage to the liver

Ways You Can Take Care of Your Liver

Managing Your Medications

Natural Approaches to Hepatitis C and Liver Health

Diet
Dr. Galati- Watch: Is there a Special Diet for Hepatitis C?

HCV Education - CME activities
HCV-Education
Includes CME activities in various media formats covering the following topics: treatment regimens, resistance, current direct-acting antivirals, investigational antivirals, interferon alfa-free regimens, effects of HCV on the liver, diet,drug-drug interactions, and managing side-effects

Transmission
Sexual transmission of HCV among monogamous heterosexual couples: The HCV partners study

Need Some Answers?
Updated 2012
Best List Of HCV FAQs
Informational site providing resources, education, and support for the hepatitis C community.
168 Pages Of Hepatitis C FAQs

Treatment
A ‘Killer’ of a Reason to Treat Hepatitis C
Dr. David Johnson stresses the importance of treating patients with hepatitis C and advanced hepatic fibrosis, given that those with sustained treatment response have a lower all-cause mortality rate.

Update on the Management and Treatment of Hepatitis C Virus Infection
Recommendations from the Hepatitis C Resource Center and the National Hepatitis C Program Office, May 2012

Guidance for Hepatitis C Treatment Monitoring
Monitoring Patients on Pegylated Interferon + Ribavirin ± Protease Inhibitor (Boceprevir or Telaprevir), March 2012

An Update on Treatment of Genotype 1 Chronic Hepatitis C Virus Infection: 2011 Practice Guideline by the American Association for the Study of Liver Diseases
Ghany MC, Nelson, DR, Strader, DB, et al. Hepatology, Vol. 54, No. 4, 2011, 1433-1444.

Potential IFN-Free Regimens For HCV
Enthusiasm is growing for the various interferon (IFN)-free therapies on the horizon for patients with hepatitis C virus (HCV) infection. At the recent annual meeting of the American Association for the Study of Liver Diseases (AASLD), The Liver Meeting 2012, four of the six late-breaking abstracts and a slew of other studies discussed new oral regimens that can be used to achieve high rates of sustained virologic response (SVR) in a variety of HCV patient cohorts, including null responders.

Current Prospects for Interferon-free Treatment of Hepatitis C in 2012
Numerous other DAAs are in clinical development, and phases 2 and 3 trials are evaluating interferon-free combination DAA therapy. Interferon-free sustained virologic responses have now been achieved with combinations of asunaprevir and daclatasvir; sofosbuvir and ribavirin; sofosbuvir and daclatasvir; faldaprevir and BI207127; ABT-450, ritonovir and ABT-333; ABT-450, ritonovir and ABT-072; miracitabine, danoprevir and ritonavir; and alisporivir and ribavirin. Some drugs are genotype-specific in their activity, whereas others are pan-genotypic, and differential responses for the genotype 1 subtypes 1a and 1b have emerged with many DAA combinations. Viral breakthrough and resistance are important considerations for future trial design. The prospect of interferon-free combination DAA therapy for hepatitis C virus is now finally becoming a reality.

Treatment Action Group publishes Guide to  Clinical Trials for  People With Hepatitis C
There are many new hepatitis C drugs being  studied in clinical trials. People with hepatitis C have many options to choose  from. Whether you have hepatitis C or another medical condition, deciding to  participate in a clinical trial can be complicated. Having more information can  help you decide whether or not to participate in a clinical trial, and which  trial, or trials, may be right for you....

Do I Need To Treat? Should I Wait? Or Treat Now?
Treat Now or Wait?
The debate rather to treat HCV now or wait is ongoing, in the journal "Liver International" factors which affect the decision to treat now or delay therapy are discussed.  

Excerpt From The Article-
When deciding whether to treat a patient with HCV now, or to defer treatment, most clinicians would decide to treat patients with bridging fibrosis and cirrhosis (Metavir stages 3 and 4) now because they have an increased risk of hepatic decompensation and hepatocellular carcinoma. There is a feeling by many that patients with less severe fibrosis can wait for better or less toxic therapies. The irony of this approach is that HCV treatment is more successful in patients with mild than advanced fibrosis. This is true whatever the baseline factors including genotype, race and IL28B status and whether patients are being treated with PEG-IFN/RBV dual therapy or triple therapy with a protease inhibitor [2-5]. Future HCV treatments will probably also be less effective in patients with advanced fibrosis and cirrhosis. Excluding patients with mild fibrosis from treatment now will only reduce the overall SVR rate in the treated population, increase the overall cost per SVR, and most importantly increase the risk that a patient who could be ‘cured’ of HCV now fails to achieve SVR in the future.

View the article here: Patients with HCV and F1 and F2 fibrosis: treat now or wait?

Updated March 2013
A collection of articles available @ Hepatitis C New Drug Research and Liver Health:
Chronic hepatitis C: Treat or wait?

Where Can You Find An Easy To Understand Website With Accurate Information ?
HCV Advocate is the go to site for all your questions, filled with information, news, HeathWise articles, fact sheets, new drugs currently in the pipeline, clinical trials, and a monthly newsletter.

The Links
HeathWise articles can be found in the HCV Advocate Newsletter, Fact Sheets , HCV Drug Pipeline , News Updates , Clinical Trials, and Hepatitis C -Everything You Need to Know

Personal Experience
Lucinda K. Porter, RN
Starting 12 weeks of sofosbuvir, GS-5885, and ribavirin

Defeating Hep C
Contracted HCV genotype 1a via blood transfusion during chemotherapy treatment for leukemia at age 12 (acute myelocytic leukemia). 

Books
Lucinda K. Porter, RN:
FREE FROM HEPATITIS C

Coming in September 2013
A second book authored by Lucinda K. Porter, RN:
Hepatitis C Treatment One Step at a Time: Inspirational Readings and Practical Tips for Successful Hepatitis C Treatment

Curing Hepatitis C - View Chapter 6
Curing Hepatitis C, View Chapter 6: The Future of HCV Treatment-Beyond Triple Therapy
Chapter six of the new book "Curing Hepatitis C" written by Gregory T. Everson, M.D. is available for downloading.
To order the book click here. 

Multimedia
For the hands on reader check out the Multimedia section of the web site. This page contains udpated HCV educational podcasts, and videos.

Hepatitis C – What Are Your Treatment Choices: New Webinar
If you have hepatitis C and need more information on your treatment choices, there is a new tool available on the American Liver Foundation Hepatitis C website. Watch as Dr. Joseph K. Lim, Associate Professor of Medicine and Director of the Yale Viral Hepatitis Program at the Yale University School of Medicine shares with you treatment options for viral Hepatitis C.

Need To Talk To Someone ?
Help is available, recently "Project Inform" announced the launch of a new national helpline, 877-HELP-4-HEP (877-435-7443), run by and for people affected by hepatitis C. The helpline operates Monday through Friday 9am to 7pm EST. To learn more, visit www.help4hep.org or email info@help4hep.org.

Online Support - Message Boards
HCV Support
"HCV Support gives me the strength, knowledge and support that I need to fight this disease. The members genuinely care about one another and they completely understand how you feel."
 
Thanks to all the members who are an integral part of the community, MedHelp has become a destination for people looking for answers to their medical questions. As the community has grown, so has the number of questions on the site. While the top community members devote time each day to helping others get answers or support in their time of need, there seem to always be more questions than answers.
 
Hepatitis Central
Hepatitis-Central is providing this board only as a forum for discussions on hepatitis, treatments, etc.
This message board will allow you to keep in touch with other patients, or caregivers, exchange ideas, as well as give and receive support.
 
Discuss Hepatitis C with others who understand what you're going through
 
Help, Support and Information For Those Affected By Hepatitis C
Have Questions About Hepatitis?
 
Articles, general discussions relating to Hep C and treatment
 
Yahoo HepCWarriors
This group is for ALL PEOPLE AFFECTED BY HEPATITIS C (HCV), who spend time researching the web for info on Hep C. We are "Web Warriors". We fight the "dragon" with a vengeance. Knowledge is vital to surviving or defeating Hepatitis C. HepCWebWarriors is is a valuable resource for the latest HCV news, published papers, treatment and new drug trials.

Hep Mag
Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

May you find a way to manage the uncertainty and new changes this disease can bring. Wishing you a successful and safe journey.


0 comments:

Post a Comment