Beacon

Definition of fatigue in HEP C:

Tiredness chronic fatigue in illness related to activity occurs with no activity, rapid onset, short, intermittent constant, recurrent, overwhelming fatigue. Not affected by rest or sleep minor impact on activities and QOL major impact on activities and QOL. Of patients with HEP C, 67% have fatigue, of HEP B patients, 29%, of those with hemochromatosis, 46%, and those with PBC, 85%.

Correlates:
· Mood disturbances: depression, anxiety
· Symptom distress: Body pain, nausea, muscle and joint aches, serum cytokine levels.
· Factors NOT associated with fatigue: AST/ALT, severity of disease, length of infection, serum cytokine levels (viral fighting activity)

Self Care Strategies:
· Change activities:

Rest, nap, take things easy, stop activities.
· Change sleep & wake pattern:

Go to bed early. Sleep most of the day.
· Psychological distractions:

Listen to relaxation tapes and music, read, watch TV.
· Increase social activities:

Have dinner, go to movies, start hobbies.
·Push yourself:

Make effort to visit friends, etc.
· Maintain normal life:

Work, housework, cook, shop
· Nutrition:

Take vitamins, change meal times
· Alternative approaches:

Homeopathic remedies, acupuncture.
· Other comfort measures:

Hot baths, calling doctors & nurses (compassionate listening helps).

Nursing Interventions:
· Patient prep. Education
· Psychological
· Attention restoring
· Exercise/activity
· Energy conservation

Educational Interventions:
· Info for patients & families about disease, treatment, side effects reduces anxiety. Don't overload the patient with too much information.
· Use written materials for them to take home. Accuracy is important.
· Use daily journal to document fatigue, so they notice when they feel more tired. Look for a pattern and take advantage of the best times.
· Positive impact on self-care
· Enhance Functioning and QOL
· Alleviate stress
· Reduce negative effects
· Patient's adaptation to therapy.
Two patient were discussed. One stopped having friends over for dinner because she worried about contamination. Another refused treatment because she thought she'd lose her hair. Education is important.

Psychosocial Interventions:
Reduction of fatigue through muscle relaxation training. Attention restoring intervention: Mental fatigue can be alleviated through activities related to nature. These should be diversion activities where you don't have to think, such as a walk in a garden or park, bird watching, gardening. The benefits are enhancement of attention capacity, etc.

Exercise:
This should be an enjoyable activity, such as walking, cycling, stretching, low impact aerobics, dancing. Exercise reduces fatigue and promotes well being, and reduces the progression of HEP C by reducing obesity, helping the heart and reducing the risk of diabetes.

Conservation of Energy: Set priorities. Modify activities. Get understanding from family. Accept help from others.

Summary: Fatigue is common in HEP C.
1. Use a combination of approaches.
2. Get involved in exercise and activities.
3. Develop your own program.
4. Assess the efficacy of your strategy.

The Natural History of Hepatitis C Virus Infection, Harvey Alter, MD CDC

Dr. Alter gave a very enjoyable presentation, starting out with a cute joke and a slide that was shown without comment that said, "I'm not really bald. I'm a hair donor." He went on to present the risk factors of those infected:

40% IV Drug Use.
28% Transfusions before 1990.
62% Coke snorting.
39% Sexual promiscuity (defined as having had more sex than the investigator) He explained that this group had other risk factors, as well.
10% Of those diagnosed are identified at the time of the onset of the disease. 70% are discovered to be infected later at a routine exam or because they try to donate blood, but are asymptomatic. 10% Are later diagnosed due to symptoms. I didn't catch the last 10%, but I imagine that they would be diagnosed because of more severe complications.
85% Become chronic carriers.
15-25% (and growing) Clear the virus spontaneously. A few have a late spontaneous clearance, without treatment. Why is there this difference? Because of the interplay between the virus and the host.

Hep C is an RNA virus, and it mutates. Dr. Alter showed us a graph of the quasi-species of 1 patient who had 20 different quasi-species. He went on to discuss the evolution of the quasi-species. He said that one strain is usually dominant, but that another strain can later become more dominant than the first strain or quasi-species. Even if one is suppressed (by treatment or the immune system) another can take over. In all spontaneous recoveries, cell mediated lymphocyte response occurs. Something, perhaps in the virus itself, inhibits people's immunity to the virus so that in most cases people don't clear the virus. In a study done on chimpanzees, one infectious clone was given to each of two chimps. One cleared the virus. The other didn't. Host response is important.

Therapeutic vaccines are this doctor's hope. There is a natural immune response that may be able to be enhanced.
There are 3 types of transfused patients with Hep C:

1.     Those who resolve the disease spontaneously, but the antibodies persist (15-20%+)
2.     Those with slow progression over 20 or more years (70%)
3.     Those with severe chronic infection, who die within 10 years (15%)

Looking at Hepatocellular Carcinoma (HCC) in Japan, 63% of the cases are due to Hep C alone, while 6% are blamed on co-infection with HCV and HBV.

Some investigators suggest that it takes an average of 7.5 years to move from one stage of fibrosis to another, but others have found that the progression is not linear, and that most people don't progress, however those reaching stage 3 have a high chance of progression. Fibrosis is worrisome, but if you don't get cirrhosis, you're OK.

Alcohol and HCV:

Drinking alone gives people 15 times the possibility of getting cirrhosis. Those with HCV who drink have 147 times more possibility of getting cirrhosis than those who don't (I'm pretty sure that's what he said.)

Co-infection with HIV:

The Irish women infected by blood products were studied 17 years after they were infected. 55% had mild inflammation and 57% had fibrosis. In blood donors after 10 years, 2% had cirrhosis. Of children transfused before 1991 and studied 20 years later, it was found that 45% had spontaneously cleared the virus. Only 1 out of 400 had cirrhosis, and that person also had congestive heart failure. Some people clear both the virus AND the antibodies, leaving no trace of infection. This was discovered only because the original blood samples were available which contained the antibodies. There was a study (with which we are familiar) of 17 military men who had their blood stored in someone's freezer, and it was found that 7 had died, but only one of liver disease, and 10 were still alive-50 years later! Dr. Alter showed a flow-chart that went something like this:

Acute Hepatitis:

15% Early recovery
5-10% No symptoms
85% Chronic Infection
65-70% Stable--may progress
20-30% Progressive Cirrhosis -- progress HCC 1-5%

Treatment/Cure 25-40%:

Even with only 10% of patients who might progress to cirrhosis (this is a low proportion), there would be so many people affected, that there would be a VERY serious impact on the healthcare system, so even though this statistics may feel minimizing to the individual, the sociological effect is in no way minimal.

Notes by Joan King

July 27th-29th "The Traveling Wall" Join the Veterans at Crown Hill Park in Bellevue for this special event honoring Vietnam Veterans. Frontline Hepatitis will participate in this function as well as many other groups in the State. There will be information and hopefully free testing for Veterans at this event.

Contact: sfcol49@gte.net Colonel Mike for information

August 2-5th in San Francisco ~ The HCV Global 2001 Conference

HCV Global Foundation's
4th Annual HCV Conference
Moving Hepatitis C to
The Top of the Agenda

Contact and information:

Phone: 650.369.0330 - fax: 650.369.0331

VERSANT HCV RNA Qualitative Assay

HCV using the conventional PCR test were actually positive when tested by the new TMA test.

A study presented at this year's 51st American Association for the Study of Liver Disease (AASLD) meeting reported on results using a new hepatitis C virus (HCV) test which utilizes a molecular diagnostics technology called "transcription mediated amplification" (TMA). The results of this study showed that more than one-third of the patient samples that tested negative for HCV using the conventional PCR test were actually positive
when tested by the new TMA test.

Dr. Stefan Zeuzem of the Zentrum der Inneren Medizin, Frankfurt, Germany, presented results of a study in which 47 patient samples that had previously tested negative for HCV with existing PCR-based assays, were re-tested with the VERSANT HCV Qualitative RNA Assay from Bayer Diagnostics. The results of this new study showed that 36% of patient samples that were negative using the PCR assay were positive by the new TMA test. After being tested with the conventional PCR test, all of these patients had relapsed after treatment was stopped. Dr. Zeuzem speculated that the results may have implications for the treatment of chronic Hepatitis C, such as keeping patients on therapy longer to avoid relapse. Further research is necessary to confirm these early stage results.

The VERSANT HCV RNA Qualitative Assay, is currently available for Investigational Use Only (the performance characteristics of this product have not been established) in Germany and other parts of Europe. Qualitative testing for HCV using TMA technology is available in the U.S. as a service of the Bayer Reference Testing Laboratory in Emeryville, California.

11/15/00

Reference:
Sarrazin C and others. Detection of residual HCV RNA by
transcription-mediated amplification in patients with complete virological
response according to PCR-based assays. Abstract 787. Program and Abstracts
of the Fifth Congress on Drug Therapy in HIV Infection. October 22-26, 2000,
Glasgow, Scotland.

Source:
HIV and Hepatitis Treatment Advocates. www.hivandhepatitis.com

Frontline Hepatitis Awareness is a 501C(3) Foundation with the main headquarters located in Seattle Washington. Our mission includes education as a means of empowerment following diagnosis of Hepatitis C and HCV/HIV Co-infection. We provide outreach services, educational presentations, musical benefits, advocacy for patients, national educational interests and compassionate dealings with all patients and their family and friends.

The articles in this newsletter are not intended to be medical advice. Please consult your doctor for treatment options.