—Alan Franciscus, Editor-in-Chief
AASLD/IDSA recently released hepatitis C treatment guidelines that limit treatment of hepatitis C to those who are considered the most seriously ill. In this respect, people with debilitating fatigue are recommended as the “highest” in need of treatment along with those with advanced disease, other conditions or diseases in addition to having HCV, and HCV populations who are at high risk for transmitting HCV.
One of the most important strategies that people can do is to make sure that all of their symptoms are reported to their medical providers and documented as part of their medical records.
The article below provides tips to help people report and document their symptoms.
Very soon there will be treatments that will cure almost everyone of hepatitis C. These new treatments will have:
- Minimal side effects, especially compared to the therapies that came before them
- Cure rates that will be approaching up to 100%
- Treatment periods that will be limited to 12 weeks—at least for some treatments
Hurray! Good news for everyone with hepatitis C.
But of course there is a downside – the price of the new
medications. We don’t know yet what the price for the next generation
of interferon-free medications will be, but generally once a price has
been set there is little chance that medications that come along later
will be priced lower—I really, really hope that I am wrong. But even
if they are somewhat lower they are still going to be expensive.
The problem of the high cost of current medications is already
impeding access to treatment. Insurance companies, government payers
(Medicare, Veterans Healthcare, etc.) are trying to come to terms with
the expense of the medications when the great number of people who need
to be treated is factored into the equation. There have already been
denials of coverage because people are not deemed ‘sick enough’ to
qualify for treatment. Plain and simple: It is unethical to deny
people a medication because they are deemed to be ‘not sick enough.’
Another sore point—being ‘sick enough’ is being narrowly defined as
having severe liver scarring without any consideration for other
(extrahepatic) symptoms and side effects that many people with
hepatitis C experience.
Everyone with hepatitis C should have access to these life-saving
medications. In response the HCV Advocate will be publishing a series
of articles, fact sheets and tools to help patients navigate through
the medical care maze and help them to self-advocate.
Topics will include:
- Medical appointments:
- How to maximize your medical appointments, questions to ask,
reporting symptoms, how to dress, being respectful and respected, what
to do if you disagree, working with the gatekeeper (the nurse), and
many more strategies to make the transition from a passive to an
assertive patient. How to talk to your doctor about treatment.
- Medical insurance – what, when and how. How to fight rejection
letters. Open enrollment and what that means for your drug coverage.
Questions you should ask yourself about your coverage.
- Patient Assistance Programs – getting started before you start
treatment. Knowing your options, and what services are offered.
- Finances – what to expect if you are on treatment.
- Getting support
We are going to be adding more educational tools as we hear more
from people about some of the obstacles they are facing. But please
check out our fact sheets and guides—we already have many resources
that can help people access services and treatment.
Symptoms of Hepatitis C
As I mentioned before, some insurance companies are basing approval
of the medications on the degree of liver damage. People living with
chronic hepatitis C have many other symptoms and conditions that are
not necessarily related to the scarring of the liver. This is why it
is so important to make sure that all of the conditions and symptoms of
hepatitis C are recorded in your medical records. It is also important
to record how the symptoms and conditions affect your daily
The symptoms of hepatitis C range from mild to moderate to severe.
Personally, I believe that everyone with hepatitis C has symptoms, but
they come on so gradually and over such a long period of time that
most people don’t notice them or believe that they are part of the
aging process. The list below contains some of the more common
symptoms reported by people with hepatitis C, but the list is not all
inclusive. If you have symptoms that are not listed here be sure to
mention them to your medical provider.
- Fatigue is the most common symptom reported by people with
hepatitis C. It can range from mild to moderate to severe. Again,
some people may not even realize how fatigued they are if the fatigue
falls somewhere within the mild to moderate range. A good way of
measuring it is to talk with friends who are healthy to find out what
their fatigue level is. Another good way is to talk to others with
hepatitis C and try to gauge how your fatigue measures up with their
fatigue. Finally, try to figure out how fatigue affects your daily
life. How does the fatigue affect your work, recreation and
interaction with family and friends.
- “Brain Fog” is a common symptom of hepatitis C which is usually
defined as low-level cognitive impairment. Typical symptoms include
fuzzy thinking, memory problems, and lack of concentration.
- Muscle and Joint Pain – low level aches and pains throughout the body.
- Insomnia – inability to sleep or sleep that is not restful.
- Headaches – pain or pressure on one or both sides of the head.
- Fevers and Night Sweats – generally light fevers and waking up with clothes and/or bedding wet.
- Depression and anxiety – feeling down and nervous.
- Loss of Appetite or weight loss.
- Nausea and vomiting – feeling sick to your stomach or vomiting.
- Abdominal Pain or pain in the general area of the stomach and intestines.
- Liver Pain in the upper right side, right behind the rib cage.
In addition, ask your medical provider to test you for extrahepatic
manifestations—these are conditions outside of the liver. There are
many conditions that are either directly caused by hepatitis C or that
are more commonly seen in people with hepatitis C. See our fact sheet
on extrahepatic manifestations. Ask to see a specialist who understands and can diagnose extrahepatic manifestations.
Symptoms of Cirrhosis
Cirrhosis is a potentially life-threatening condition. There are
two types of cirrhosis—compensated and decompensated. Compensated
cirrhosis is defined as a liver that is heavily scarred but can still
perform most of the important chemical functions that keep the body
running smoothly. When the liver is decompensated this means that the
liver is severely scarred and damaged and normal function is impaired.
In addition to the symptoms listed above, other symptoms that need to
be diagnosed by a medical provider are:
- Fluid retention and swelling in the legs and hands
- Frequent urination
- Bleeding and excessive bruising
- Pruritus – excessive itching
- Jaundice – yellowing of the skin and eyes
- Menstrual irregularities
- Nail changes
There are other symptoms that need to be diagnosed and managed by a medical provider including:
- Encephalopathy – mental confusion, changes in sleep patterns, loss of memory, coma
- Varices – stretched and bleeding blood vessels of the esophagus and stomach
- Malnutrition – this happens when the liver isn’t able to process nutrients
- Portal hypertension – the liver is so scarred that blood can’t get through it
- Ascites – fluid retention in the abdominal region
A good way to measure the symptoms is by the 1 to 10 method with 10
being the worst. For example, if you could not get out of bed one day
because you were so tired, rate that fatigue as a 10. If you were
tired so that you decided that you would just watch TV that night it
might be a 4 or 5. It might be a good idea to start a symptom log or
journal. A copy could be inserted into your medical chart.
afraid to tell your doctor or nurse what symptoms you are having—most
doctors and nurses welcome patient involvement in their medical care.
Remember everyone has the right to be treated and cured.