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SNAPSHOTS —Inclusion Body Myositis | SVR & Advanced Fibrosis | HCV & Parkinson’s

Hepatitis C Blog Posted on January 27, 2016 by AlanJanuary 27, 2016

SNAPSHOTS —Alan Franciscus, Editor-in-Chief

Article: Hepatitis C virus infection in inclusion body myositis: A case-control study—A Uruha et al.
Source:  Neurology. 2015 Dec 18. pii: 10.1212/WNL.0000000000002291. [Epub ahead of print]

Results
The hepatitis C virus is known to cause many extrahepatic manifestations such as fatigue, muscle, and joint pain, insomnia and cryoglobulemia just to name a few.  The current study was to test to see if there was a link between the hepatitis C virus and inclusion body myositis (IBM).   IBM is a progressive group of muscle diseases.  IBM usually occurs (but not always) in people who are over 60 years old.  The researchers studied 114 patients with hepatitis C and IBM and 44 age-matched patients with polymyositis (disease of the muscle fibers) diagnosed from 2002 to 2012.  Muscle biopsies were taken and compared between the two groups.

Conclusions 
The authors found that 28% of the patients with IBM had HCV antibodies compared to 4.5% of patients with polymyositis who had HCV antibodies and 3.4% of Japanese patients in their 60’s with polymyositis.  The authors also did not find a difference in the disease characteristics of IBM in both groups leading them to conclude that both diseases were the same (non-HCV and HCV IBM groups).
Editorial Comment
The same authors had published a smaller study in 2013 on inclusion body myositis (IBM) and HCV and came to the same conclusion.  While this does not prove that hepatitis C causes IBM, it does suggest an association. More studies are needed to find out if hepatitis C causes IBM and if treatment can arrest or reverse it.

For more information about IBM visit: www.mda.org/disease/inclusion-body-myositis/overview

_________________________________________________________________________________

Article:  Improvement of platelets after SVR among patients with chronic HCV infection and advanced hepatic fibrosis—A J van der Meer et al
Source:  Journal of Gastroenterology and Hepatology doi: 10.1111/jgh.13252

Study Aim and Results
One of the consequences of advanced fibrosis and cirrhosis is low platelets and enlarged spleen.   Platelets help the blood to clot and the spleen stores blood cells including platelets.  In this study, the authors reviewed studies conducted between 1990 and 2003—platelet counts of 464 patients were measured six months before treatment and 24 weeks following the end of treatment.   Of the 464 patients evaluated 353 (75%) had cirrhosis, and 187 (40%) were cured.

Conclusions
Among the patients who were cured the platelet counts increased and the spleen size decreased—all positive signs of improvements in liver functioning.  In those who did not achieve a cure, the platelet counts decreased, and the spleen size increased – signs that the liver functioning was worsening. The authors commented that the results of this study suggested that curing hepatitis C reduces portal hypertension, increased platelet counts and reduced the size of the spleen.

Editorial Comment
The study supports treating (and curing) people with advanced hepatitis C.  Curing persons with advanced hepatitis C can improve symptoms and quality of life, and improves long-term survival. It is critical to remember, however, that HCV disease progression still occurs, and lifelong monitoring is still needed. This is why we need to treat people BEFORE their disease reaches this critical stage.

_________________________________________________________________________________

Article:  Functional impairment in older liver transplantation candidates: From the functional assessment in liver transplantation study—C W Wang et al.
Source:  Liver Transplantation, Volume 21, Issue 12 December 2015

Study Aim and Results
Patients 65 years old and older typically have poorer liver transplant outcomes than younger patients.  The authors in the current study wanted to understand what factors could predict better outcomes in these patients other than the health issue criteria used for the Model for End-Stage Liver Disease (MELD) score to assess patients for eligibility to receive a liver transplant.  The authors used an additional battery of tests called the short physical performance battery (SPPB) test.  They tested and divided the patients into two groups—younger (under 65 years old) and older (65 years old and older).  The SPPB measures gait speed (how quickly someone could walk), chair stands (standing up from a sitting position), and balance (various balancing exercises such as standing on one foot) and graded the patients on scales as either impaired or robust.

Conclusions 
The SPPB impaired scores at any age were more likely to die while waiting for a liver transplant.  There was no significant difference between the younger and older robust patients when it came to the risk of dying while waiting for a liver transplant.

Editorial Comment
The logical outcome of this study is the that people with physical performance problems as listed in the SPPB should be given physical therapy instructions to improve their conditions and increase long-term survival.

Note: If you are older (or possibly of a younger age) and have SPPB issues it makes sense to be evaluated by a medical provider and take the appropriate action.  SPPB issues (especially balance issues) are one of the most common reasons that older people fall and have severe injuries that can be life-threatening.  There are some very easy exercises that anyone can do to improve balance issues. If balance issues are more advanced talk with a medical provider, who can send you to a physical therapist who can instruct you on exercises to increase your strength and balance. The key is to start early.

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Tagged ExtraHepatic Manifestations, hcv and parkinson disease, inclusion body myositis, SVR and advanced fibrosis

EASL 2015: Cancer rates among patients with hepatitis C are increased compared to those not infected

Hepatitis C Blog Posted on April 25, 2015 by HCV AdvocateDecember 1, 2015
New results show that cancer rates in patients with the hepatitis C
virus (HCV) were significantly increased compared to the non-HCV cohort.
The researchers suggest an extrahepatic manifestation of HCV may be an
increased risk of cancer. 

Results recently announced at The International Liver CongressTM 2015 show that cancer rates in patients with the hepatitis C virus (HCV) were significantly increased compared to the non-HCV cohort. The researchers suggest an extrahepatic manifestation of HCV may be an increased risk of cancer. When all cancers are considered the rate is 2.5 times higher in the HCV
cohort; when liver cancers are excluded, the rate is still almost 2
times higher.

The aim of the study was to describe the rates of all cancers in the cohort of HCV patients compared to the non-HCV population. Known cancer types associated with hepatitis C include non-Hodgkin’s lymphoma, renal and prostate cancers, as well as liver cancer.

A retrospective study at Kaiser Permanente, Southern California, USA, was conducted. The study authors recorded all cancer diagnoses in patients over 18 years of age with or without HCV during 2008-2012. Within the timeframe of the study 145,210 patient years were included in the HCV cohort, and 13,948,826 patient years were included in the non-HCV cohort.

Read more…

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Tagged EASL 2015, ExtraHepatic Manifestations, Liver cancer HCC

EASL 2015: Cancer rates among patients with hepatitis C are increased compared to those not infected

Hepatitis C Blog Posted on April 25, 2015 by HCV AdvocateDecember 13, 2015
New results show that cancer rates in patients with the hepatitis C virus (HCV) were significantly increased compared to the non-HCV cohort. The researchers suggest an extrahepatic manifestation of HCV may be an increased risk of cancer. 

Results recently announced at The International Liver CongressTM 2015 show that cancer rates in patients with the hepatitis C virus (HCV) were significantly increased compared to the non-HCV cohort. The researchers suggest an extrahepatic manifestation of HCV may be an increased risk of cancer. When all cancers are considered the rate is 2.5 times higher in the HCV cohort; when liver cancers are excluded, the rate is still almost 2 times higher.

The aim of the study was to describe the rates of all cancers in the cohort of HCV patients compared to the non-HCV population. Known cancer types associated with hepatitis C include non-Hodgkin’s lymphoma, renal and prostate cancers, as well as liver cancer.

A retrospective study at Kaiser Permanente, Southern California, USA, was conducted. The study authors recorded all cancer diagnoses in patients over 18 years of age with or without HCV during 2008-2012. Within the timeframe of the study 145,210 patient years were included in the HCV cohort, and 13,948,826 patient years were included in the non-HCV cohort.

Read more…

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Tagged EASL 2015, ExtraHepatic Manifestations, Liver cancer HCC

New “Easy C” Series on Extrahepatic Manifestations of Hepatitis C Launched

Hepatitis C Blog Posted on December 3, 2014 by HCV AdvocateDecember 1, 2015

Be sure to check out our new series on Extrahepatic Manifestations of Hepatitis C.

Extrahepatic manifestations of hepatitis C are a conditions or illnesses that occur outside of the liver and which are caused by hepatitis C.

Read more…
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Tagged easy facts, ExtraHepatic Manifestations

Hepatitis C Virus Infection Increases the Risk of Developing Peripheral Arterial Disease: A 9-Year Population-based Cohort Study

Hepatitis C Blog Posted on October 9, 2014 by HCV AdvocateDecember 1, 2015

—Alan Franciscus, Editor-in-Chief  

Hepatitis C is not just a disease of the liver. 
There have been many studies that have shown that hepatitis C affects
the liver, kidneys, heart, blood pressure and almost every organ of the
body.  This is why it is so important that everyone with hepatitis C
is monitored and evaluated for treatment.  Being cured of hepatitis C
can help to relieve many of the symptoms of hepatitis C, reverse some or
all of the damage caused by hepatitis C, prolong the life of people
with hepatitis C and can greatly improve the physical and emotional
life of people with hepatitis C.

The abstract below is a long-term study about the effect of hepatitis C (HCV) on peripheral arterial disease.

Peripheral arterial disease or PAD is a build-up
of fat, calcium, and other tissue—plaque—in the arteries that supply
blood to the body.   When enough plaque builds up it is called
atherosclerosis.  Atherosclerosis can cause hardening and narrowing of
the arteries that can cause serious health problems—limiting the flow
of blood to parts of the body that could lead to heart attacks,
strokes, numbness in the limbs, and infections that don’t heal. 

In the 9-year study below, it
was found that people with HCV were 1.43 times more likely to develop
PAD and that the risk increased with the person’s age compared to those
who did not have HCV.  The risk considerably increased in those with
HCV who also had kidney disease.— Alan

Hepatitis C Virus Infection Increases the
Risk of Developing Peripheral Arterial Disease: A 9-Year
Population-based Cohort Study.

Hsu YH1, Muo CH2, Liu CY3, Tsai WC3, Hsu CC4, Sung FC5, Kao CH6.

J Hepatol. 2014 Sep 25. pii: S0168-8278(14)00712-0. doi: 10.1016/j.jhep.2014.09.022. [Epub ahead of print]

Abstract

BACKGROUND & AIMS:
The relationship between hepatitis C virus (HCV)
infection and peripheral arterial disease (PAD) development remains
unclear.

 
METHODS:
Health insurance claims data were used to construct a
cohort of HCV-infected patients who were diagnosed in 1998-2011.
Patients younger than 20 years and those with history of hepatitis B or
PAD were excluded.

We selected 7641 HCV-infected patients and 30564
matched controls. The adjusted risk of developing PAD was analyzed
using a multivariate Cox hazard model.

 
RESULTS:
The results show that the excess risk of PAD
development in HCV-infected patients is 1.43-fold higher (95% CI =
1.23-1.67) compared with non-HCV patients.

The adjusted risk of PAD development increased
with age; compared with the 20-34-year-old patients, the risk is
3.96-fold higher in HCV-infected patients aged 35-49 years, and
11.7-fold higher in those aged 65 years and above. CKD/ESRD has highest
risk for PAD (HR = 1.80, 95% CI = 1.29-2.53). HCV-infected patients
with four comorbidities exhibited a substantially higher risk of
developing PAD (HR=9.25, 95% CI = 6.35-13.5). Excess risk of developing
PAD was observed since within the first year of follow-up till the
third year.

 
CONCLUSION:
HCV-infected patients have an independently higher
risk of developing PAD. HCV-infected patients with comorbidity have
increased risk of developing PAD.

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Tagged ExtraHepatic Manifestations, Peripheral Arterial Disease

UPDATE—Patients First: The Right to Be Treated and Cured, by Alan Franciscus

Hepatitis C Blog Posted on August 25, 2014 by HCV AdvocateDecember 1, 2015

 
  —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. 

                                                                                                                       -Alan

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
activities. 

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

Measuring Symptoms
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.
Don’t be
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.

Get Tested. Get Treated. Get Cured.
Source: HCV Advocate Newsletter – July 2014 
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Tagged ExtraHepatic Manifestations, managing medical appointments, medical insurance, patient assistance, Support, symptom log, The right to be treated and cured

Patients First: Extrahepatic Manifestations—Alan Franciscus, Editor-in-Chief

Hepatitis C Blog Posted on August 3, 2014 by HCV AdvocateDecember 1, 2015

 
  —Alan Franciscus, Editor-in-Chief

In last month’s Patients First column I wrote about
reporting symptoms to your medical provider and making sure that any
symptoms are included in your medical records.  I also touched briefly
on extrahepatic manifestations (EH).  In this month’s column I would
like to discuss some of the more serious extrahepatic manifestations in
greater detail for a variety of reasons—the main reason is that many
medical providers are unaware of these serious conditions:  Diagnosing
HCV-related extrahepatic manifestations is important so they can be
treated and also because successfully treating these conditions will
add to the body of evidence that HCV treatment is recommended and
needed.  The more serious extrahepatic manifestations I will discuss
are cryoglobulinemia and conditions associated with cryoglobulinemia
including glomerulonephritis (kidney disease) and vasculitis, as well
as a certain type of cancer called non-Hodgkin Lymphoma (NHL).

Cryoglobulinemia that is associated with hepatitis C is called mixed cryoglobulinemia. Hepatitis
C accounts for more than 90% of cases of mixed cryoglobulinemia and it
is the most common disorder that is related to the hepatitis C virus. 
It is caused by abnormal proteins in the blood called cryoglobulins
that clump together when the blood is chilled and then dissolve when
warmed.  The proteins can be deposited in the small and medium sized
blood vessels which then restricts the flow of blood and can lead to
further problems.  To diagnose cryoglobulinemia a blood test is given
to detect the proteins called cryoglobulins.  Important note: 
the blood sample must be kept at room temperature and handled
correctly.  Fortunately, while the markers are common in people with
HCV the symptoms and disorders are uncommon.

The symptoms can be mild, moderate or severe. 

The symptoms can include:

  • Red or purple blotching skin—especially on the lower extremities of the body
  • Rashes, sores, and ulcers
  • Joint pain and inflammation
  • Mild to severe pain
  • Generalized pain
  • Lymph node enlargement
  • Numbness and tingling in the hands, legs and feet due to
    decreased blood flow and/or inflammation of the peripheral nerves
    (peripheral neuropathy)
  • Stomach pain
  • Internal bleeding and blood clot formation

Glomerulonephritis is a
condition affecting the kidneys.  It simply means inflammation of the
kidney.  It can be caused by many factors including cryoglobulinemia. 
But it can also be caused by hepatitis C disease progression and from
circulating HCV antibodies and viral particles which can damage small
blood vessels in the kidney (Membranous nephropathy). 

Vasculitis (also called essential cryoglobulinemia vasculitis)
is an inflammation of blood and lymphatic vessels caused by
cryoglobulins.  Vasculitis is sometimes referred to as the ‘hurting
disease’ because it is commonly associated with pain.  Vasculitis can
affect almost every organ of the body. 

 
The most common symptoms and conditions of vasculitis include:

  • Purplish red spots usually found on the legs
  • Joint aches and swelling as well as arthritis
  • Cough, shortness of breath and lung disease
  • Kidney disease, loss of protein through the urine
  • Low red and/or white blood cells
  • Chronic sinus congestion and infection, hearing problems, and inflammation of the nasal passages
  • Damage to the vessels of the eyes
  • Headaches, difficulty with coordination
  • Pain and numbness in the arms and legs (neuropathy)

Diagnosis of vasculitis is similar to the diagnosis of
cryoglobulinemia—a blood test to check for cryoglobulins, check for
underlying autoimmune disease, skin and tissue biopsy and arteriography
(pictures of blood vessels). 

Treatment of Cryoglobulinemia and Associated Diseases

HCV Therapy: The treatment consists
of treating the underlying cause—hepatitis C, but the results vary by
the type of HCV medications used and the types of disorders.  

In two studies that treated vasculitis with pegylated interferon,
ribavirin and either boceprevir or telaprevir, complete clinical
response rates were achieved in 57% and 79% of the patients treated. 

To date there have not been any published studies of the newer HCV
inhibitor therapies to treat cryoglobulemina or the conditions
associations with it, but they are now recommended since the treatment
duration is shorter, the HCV cure rates are higher and side effects are
less severe. 

Treating hepatitis C is generally recommended as a first line of treatment for cryoglobulemina.   

Plasmapheresis: This procedure
removes blood from the body, chills it and filters and removes the
cryoglobulins and returns the blood back to the body. 

Rituximab:  An immunosuppressant
drug that has been found to be successful when used to treat
cryoglobulinemia and some of the conditions associated with it.  It is
usually given if HCV treatment does not work, but has also been found
useful when used in combination with HCV therapies.  

Non-Hodgkin Lymphoma (NHL) is a form
of cancer that starts in the lymphatic system.  The lymphatic system
is an important network of lymph vessels that carry a clear fluid
called lymph, made up of a type of white cell that helps to fight
infection. 

Lymphoma occurs when white blood cells divide continuously without
pause, which prevents the cells from maturing.  This causes the
overproduction of immature cells that crowd out the mature white cells,
platelets and red blood cells. 

NHL is uncommon in people with hepatitis C and when it does occur it is usually after many years of ongoing HCV infection. 

 
The symptoms of NHL include:

  • Swollen, but painless lymph nodes—neck, armpits and groin
  • Unexplained weight loss
  • Fever and/or night sweats
  • Coughing, trouble breathing, or chest pain
  • Constant weakness and fatigue
  • Pain, swelling, or a feeling of fullness in the abdomen

Diagnosis is usually made with a series of blood tests, physical
tests, chest x-rays and possibly a biopsy to look at lymph tissue.  In
people with hepatitis C, the usual recommendation is to treat hepatitis
C since it is believed that hepatitis C infection causes NHL. 

Treatment of HCV-related NHL consists of closely monitoring NHL,
but most likely the underlying cause—hepatitis C —will be treat­ed. 
Hepatitis C treatment (especially successful treatment) has been found
to lead to successful remission of NHL.  This happens only in people
with HCV-related NHL, which validates that hepatitis C causes NHL. 

Hopefully, there will be studies with the newer HCV inhibitors soon
to treat this and many other under-recognized HCV-related extrahepatic
manifestations.

Get Tested. Get Treated. Get Cured.
Source: HCV Advocate Newsletter August 2014
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Tagged cryoglobulinemia, ExtraHepatic Manifestations, Glomerulonephritis, vasculitis

Patients First: The Right to Be Treated and Cured, by Alan Franciscus

Hepatitis C Blog Posted on July 1, 2014 by HCV AdvocateDecember 1, 2015

 
  —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. 

                                                                                                                       -Alan

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
activities. 

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

Measuring Symptoms
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.
Don’t be
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.

Get Tested. Get Treated. Get Cured.
Source: HCV Advocate Newsletter – July 2014 
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