Life After Hepatitis C: Long-Term Effects & Extrahepatic Manifestations

It has come to my attention, in talking to people who are mostly like me (aging hep C survivors), that things may not be going as well as we hoped after the cure. I am not being a downer or someone who says that any of us should not have treated, but the reality is that not everyone will feel great after curing hep C. In this article I discuss hepatitis C treatment long-term effects. What causes long-term health issues? The reasons are as varied as the people are, and the issues vary as well. There are those who have more advanced liver disease from the ravages of hep C, and they have some challenges that are typical with cirrhosis, but even people with cirrhosis have varying types and degrees of health issues. Some will need more monitoring than others. As I have said many times before, we are all different and that is reflected in our condition and outcome. Old hepatitis C treatment versus new treatments There are those of us who treated with the old treatment prior to the new DAAs used now; These old treatments had their own set of side effects that, in many cases, ended up causing long-term chronic conditions. The thing is that sometimes, it's hard to parse out the things caused by hep C, versus and the long-term effects of drugs, if any. Should I start treatment? I have no firm answers to share about this except to say that I believe that chronic hep C, over time, has an impact on our health, in degrees of severity. From the mildest to the harshest, there is no question in my view. This should be a great impetus for people to seek out treatment, would it not? One would think so, but I am hearing that many are having doubts not only about their own past treatment, but some are questioning whether they should treat at all. In my peer support work, I never try to talk somebody into doing anything, but instead tell them to stand up for themselves and advocate for the things they feel they need. To inform without opinion or judgement has always been the goal so that people can make informed decisions about their own health. Who are we to tell others what is best for them, even if we believe we would make an entirely different decision or took a different path altogether?! Treatment regret Whether we have any regrets or not is up to us. Personally, I do not have any regrets about the choices I made with respect to treatment or in a clinical trial with DAA’s. Am I dealing with issues after cure? Yes, but is it related to hep C and cure? I don’t know for sure. The fact is that even if it is there is nothing I can change now except my attitude about it, and I am choosing to put that behind me and move on without regrets. I suspect that if I had not been diagnosed when I was and treated when I did, I would be dealing with more health issues now. But, that is my decision and in no way should change your mind, because it is merely my decision, not yours. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Infection with hepatitis C virus (HCV) primarily affects the liver, but other organ systems may be affected as well, especially during chronic HCV infection. When this occurs, these are called extrahepatic manifestations. The most common extrahepatic manifestations fall into 4 main categories: blood diseases, autoimmune disorders, kidney disease, and skin conditions.1 While new treatments for HCV can help reduce the effects of the virus on the kidney and other organ systems, it’s good to be aware of the possible extrahepatic manifestations of HCV so you can get prompt treatment, if necessary. The four types of extrahepatic manifestations Blood diseases and autoimmune disorders These two categories have overlap, which is why they are listed together here. Multiple studies have found that many people with B-cell non-Hodgkin’s lymphoma (NHL) also have HCV infection.2 HCV is also associated with other diseases like marginal zone NHL and diffuse large B-NHL.2 Doctors believe HCV-related disorders like these occur because of the sustained activation of B cells, environmental factors, genetic factors, and inhibition of B-cell apoptosis (cell death).2 Some people with low-grade B-NHL have responded to antiviral medications to treat their HCV, with increased overall survival.2 For example, Interferon-based treatment and antivirals after remission helped people with slowly-developing HCV-associated NHL live longer and disease-free.2 Joint and muscle pain, also called arthralgia and myalgia, respectively, are other autoimmune manifestations that can occur in HCV infection. Joint pain is reported in 40-80% of patients with HCV infection, and it typically occurs on both sides of the body, mostly in the knees and hands.2 If you develop joint or muscle pain, it’s important to see your doctor to help determine whether this is a result of the HCV infection or a separate rheumatologic disease. Cryoglobulinemia is the presence of one or more abnormal proteins in the blood that can thicken in colder temperatures. Many people with chronic HCV and cryoglobulinemia have nonspecific symptoms, but Meltzer’s triad is common.3 Meltzer’s triad includes muscle pain, joint pain, and purpura, or purple spots on the skin that are skin hemorrhages. Approximately 30 percent of patients with mixed cryoglobulinemia develop kidney disease.3 Other syndromes that are associated with cryoglobulinemia include peripheral neuropathy, skin ulcers, and lymphoproliferative disorders, as mentioned above with NHL. There are 3 kinds of cryoglobulinemia, and Type II is the most common type seen in those with HCV infection.3 Treatment may consist of antiviral therapy to treat the HCV infection, immunosuppressant drugs, biologic therapies to reduce the number of B-cell clones producing the abnormal proteins, and plasmapheresis.3 Kidney disease There are several renal, or kidney, diseases associated with HCV infection. The most common HCV-related kidney disease is membranoproliferative glomerulonephritis associated with type II mixed cryoglobulinemia.3 Of patients with cryoglobulinemia, approximately 30% will develop kidney disease.3 To confirm the presence of renal disease, a kidney biopsy is taken. To treat kidney disease in patients with chronic HCV infection, the Kidney Disease Improving Global Outcomes (KDIGO) group recommends treating the HCV infection in those with kidney disease who have no counterindications to the hepatitis C therapy.3 Skin conditions There are several skin conditions that are associated with HCV infection, including leukocytoclastic vasculitis, porphyria cutanea tarda, and lichen planus. Leukocytoclastic vasculitis is a small cell vasculitis that can be found in the skin. Symptoms can include ulcers, purpura that are able to be felt, and petechiae (tiny spots due to bleeding under the skin.3 Treatment typically includes HCV therapy. Porphyria cutanea tarda usually manifests itself as skin fragility, bruising or blistering, hyperpigmentation, depigmentation, and hair growth on the face. This condition is often diagnosed based on clinical symptoms, along with elevated serum, plasma, or urine porphyrin levels. Cornerstones of treatment include staying out of the sun, abstaining from alcohol, discontinuing any iron and/or estrogen supplementation, and regular therapeutic phlebotomy to help restore iron stores and control symptoms. Those who cannot have regular phlebotomy can take an oral iron chelator, but these patients need to be monitored for any retinal damage.3 Lichen planus is caused by a reaction mediated by the immune system that involves CD8-T-lymphocytes and an unknown stimulus. Individuals with lichen planus have approximately a 5-fold higher risk of chronic HCV infection; it is estimated that 10 percent to 25 percent of patients with lichen planus are infected with HCV.3 This skin condition causes flat-topped, purple, itchy lesions on the extremities. Other areas of the body that can be infected include the GI tract, mouth, genital area, scalp, face, and nails. In most people with the condition, it resolves itself within a year, but others require treatment with a high-potency topical corticosteroid. If the condition is severe or recurrent, oral corticosteroids may be used as a first-line treatment, with other therapies also including systemic retinoids and phototherapy.3 Extrahepatic manifestations: what you should know There are a variety of extrahepatic manifestations, including some that may not be listed here. If you have HCV, especially chronic HCV, talk with your doctor about the possible other conditions that can arise from the infection. The doctor will be able to provide you with more information about symptoms to look out for, when to call them, and what treatment might entail. It’s also important to remember that even if you have HCV infection, you might not experience any extrahepatic conditions, especially if you got prompt treatment and have an SVR. Each person is different, and your doctor will be able to provide you with information most relevant to your situation. [native] [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"], Follow-up care after successful hepatitis C treatment is proactive. Patients need to be evaluated for other liver disease conditions and extrahepatic conditions. Once you have completed treatment for hepatitis C and received the cure, it’s important to note, that though the treatment eliminates the hepatitis C virus and stops further damage from occurring, hep C treatment does not cure related health conditions, like cirrhosis, fatty liver disease, diabetes, or others. Why need follow-up care after hepatitis C treatment? Risk for cirrhosis Patients who have had hepatitis C are at risk for cirrhosis (severe scarring). Patients with cirrhosis may need regular tests and exams from their liver specialist (hepatologist or gastroenterologist). These tests may include blood work, endoscopies, ultrasounds, MRI, and CT scans. Medications may be necessary to help with cirrhosis related conditions like hepatic encephalopathy and infections. A special diet is often recommended for patients with cirrhosis. In most cases, avoiding all alcohol is necessary. Patients should talk to their physician and pharmacist about what over-the-counter medications to avoid, as well as some prescription medications that can cause harm to the liver. Risk for liver cancer Patients who have had hepatitis C and cirrhosis have a higher risk factor for liver cancer and need to be tested on a regular basis. Early detection means a greater percentage of a successful outcome. Even if the patient does not have cirrhosis, regular follow-up testing with blood work and annual ultrasounds can help detect signs of cysts or tumors which can relate to cancer. Hepatitis C, cirrhosis, and liver cancer are leading causes of liver transplants. Risk for non-alcoholic fatty liver disease Reports from the American Association for the Study of Liver Disease (AASLD), reported at the Liver Meeting in 2017, that 50% of patients with hepatitis C showed evidence of non-alcoholic fatty liver disease (NAFLD).1 Non-alcoholic fatty liver disease increases the risk of liver cirrhosis and liver cancer. Risk for diabetes Studies show that approximately one-third of hepatitis C patients can develop extrahepatic conditions. Studies also indicate as hepatitis C patients age, they have a higher risk factor for diabetes and other extrahepatic conditions. Patients with cirrhosis have a higher risk for glucose intolerance and show a prevalence of type 2 diabetes. Reports indicate that approximately 30% of hepatitis C patients have type 2 diabetes.2 Talk to your physician about your liver condition and risk factors for extrahepatic conditions and tests. Taking charge of your health after hepatitis C treatment is a proactive step to help you avoid complications. Do you know the condition of your liver? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],The goal for every hepatitis C patient is to be cured and to get their life back. Every patient’s treatment and recovery experience is a bit different, and in this article we discuss common hepatitis C treatment after-effects. After treatment ends Typically, follow-up care is necessary for 12 to 24 weeks after treatment. If you remain non-detected for the virus during this time you receive a SVR (sustained virologic response) result, either as an SVR, SVR12 or SVR24. The numbers indicate how long you have remained clear of the hepatitis C virus–with milestones at 12 and 24 weeks after treatment. Normally, this is when you are considered cured. It may take a while before you stop looking over your shoulder wondering if the hepatitis C has returned, at least it did for me. It’s natural to wonder. However, if you feel sick in any way or experience after-effects of treatment, it’s natural to wonder if hepatitis C or treatment is the cause. Dealing with hepatitis C treatment after-effects After-effects mean you're experiencing some of the same side effects and symptoms you experienced during treatment, or you’re experiencing a new symptom. If you're experiencing or worried about after effects, here's what you can do: Communicate with your physician and healthcare team about all symptoms you’re experiencing in recovery. Blood tests may need to be done in order to evaluate the problem. Learn the side effects of your treatment. Fatigue is the most common of all treatment side effects and can linger on into recovery for a while. Understand your liver condition (i.e. fibrosis or cirrhosis) and how this affects your recovery. For patients with cirrhosis, it may take longer to get over recovery side effects due to the liver function being slower. If you have cirrhosis and are taking medications, do not stop or alter these meds unless your physician advises. Remember, hepatitis C treatment can cure hepatitis C, but it does not cure cirrhosis. Continued testing and follow-up exams with your physician are necessary. You may continue to experience side effects with cirrhosis. Talk to your physician about side effects from cirrhosis. Evaluate your symptoms with your physician, especially you have other medical conditions If you are taking any medications, learn what side effects these medications have. Talk to your pharmacist to find out. If you continue to experience after effects of not feeling well, talk to your physician about seeing a specialist. You may have something totally unrelated to hepatitis C or treatment. Be patient in the recovery process. The timeline for recovery is different for every patient. Remember, your body has been battling hepatitis C and treatment and it takes a while for the liver to regenerate and to feel better. If you continue to experience after effects, you can also contact MedWatch. MedWatch is the Food and Drug Administration's “Safety Information and Adverse Event Reporting Program”. Are you dealing with hepatitis C treatment after effects? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Life After Hepatitis C: Long-Term Effects & Extrahepatic Manifestations

The Long-Term Effects of Treatment

Long-Term Symptoms of Hep C

The Long-Term Effects of Treatment

Long-Term Symptoms of Hep C

The Long-Term Effects of Treatment

Long-Term Symptoms of Hep C

What Are Extrahepatic Manifestations?

Community Poll

Life after Harvoni

Why Follow-Up Care Is Needed After Treatment

Treatment After-Effects

Life After Hep C

5 Things To Ask Your Doctor After You’ve Been Cured

Extrahepatic Conditions Associated with Hep C

Life After Hepatitis C: Long-Term Effects & Extrahepatic Manifestations

Community Poll

Life After Hep C

5 Things To Ask Your Doctor After You&rsquo;ve Been Cured

Extrahepatic Conditions Associated with Hep C

5 Things To Ask Your Doctor After You’ve Been Cured