Side effects with old HCV treatment: peg interferon and ribavirin

Modern HCV drugs (DAAs) are easy to take with few side effects.

The side effects below are only linked to old HCV drugs: peginterferon and ribavirin.

Please link to next page unless you are using these drugs.

Depression, anxiety, and other psychiatric side effects – with old HCV treatment

However, depression and anxiety are common side effects of old HCV drugs: peg interferon and ribavirin. 

In rare cares, this includes feeling suicidal, and a few people have committed suicide during their HCV treatment.

A history of depression may increase this risk, although these side effects are also common in people without this history. Peginterferon can also cause mood swings, irritability, difficulty sleeping and psychosis.

Access to mental health care before, during and sometimes after HCV treatment is important. This will help treat psychiatric side effects promptly and appropriately.

Some people start an antidepressant before going on peginterferon. You may need to try more than one antidepressant to find one that is effective. Because antidepressants and other psychiatric drugs have their own side effects, other people only use these drugs only if and when they get symptoms.

An antidepressant can make a big difference. Depression causes some people to stop HCV treatment too early, when it was otherwise working well.

Your own history and how you feel about this are also important.

If you have not had depression or mental illness you will need to know about the symptoms. This makes it important to talk to your doctor about this before starting treatment.

I stayed at work during the whole of the treatment, and while this was difficult mentally and physically, I think it was the best thing. Too much time on your hands is a bad thing when you are taking a treatment that fucks with your head. I was able to have quite a few sick days and an easier work schedule by telling the occupational health doctor at work what I was going through. Fortunately, he was not obliged to go into the details of my illness with my line manager, so my confidentiality was maintained.

Flu-like symptoms, weight loss and fatigue – old HCV treatment

Modern HCV drugs (DAAs) are easy to take with few side effects.

However, flu-like symptoms (fever, aches and pains, headache, chills, nausea) are common side effects of the old HCV drug peginterferon. They usually appear 2 to 24 hours after an injection, and tend to lessen in the days after.

Taking the peginterferon injection in the evening helps, as does a low dose of paracetamol.

• Ibuprofen and aspirin are NOT recommended for people with cirrhosis.
• Anti-nausea medication may be helpful.
• Warm baths can help with muscle pain.
• Drinking plenty of water is important to help symptoms and to stay hydrated. (Grapefruit juice is not recommended because of potential drug interactions, and citrus juices are not good if you have stomach acid problems).

Fatigue (feeling tired)

Fatigue is also common. It can be a symptom of anaemia another side effect of HCV treatment.

• It can also be related to not eating enough (see “weight loss” below).
• Napping and regular light exercise, when possible, can help.
• Getting proper rest at night is important and this is more likely if your bedroom is comfortable.

Some doctors treat fatigue with the antidepressant methylphenidate (Ritalin).

The flu-like side effects were strong for the first three weeks. After this they became more like a tense headache that I could manage with painkillers and an early night. I did develop aenemia which has been difficult and made me very weak and dizzy.

Anaemia, neutropenia and thrombocytopenia – old HCV drugs

Modern HCV drugs (DAAs) are easy to take with few side effects.

However, a low CD4 cell count sometimes causes low white and/or red blood cell counts (neutropenia or anaemia) or a low platelet count (thrombocytopenia). 

Regular blood tests during old HCV treatment with pegylated interferon and ribavirin are especially important for people with coinfection.

Anaemia is a side effect of ribavirin, peginterferon and two old HCV protease inhibitors (boceprevir and telaprevir). In 2017, these drugs are not longer recommended – also sometimes ribavirin might still be used.

The most common symptom of anaemia is fatigue. Anaemia can also be caused by AZT although this is rarely used in the UK, especially during HCV treatment.

Frequent monitoring is important when using any HCV treatment because anaemia can develop quickly. With both telaprevir and boceprevir, monitoring is recommended with any symptoms and at weeks 2, 4, 8 and 12. Anaemia may be less common with simeprevir*.

People with coinfection may need more aggressive management of anaemia, especially if they have cirrhosis.

Three main ways to treat anaemia are:

1. With boceprevir- and telaprevir-based treatment, it is best to lower the dose of ribavirin. This will not make treatment less effective. When just using peginterferon and ribavirin, the impact of dose reduction is less clear.
2. Another strategy is to use epoetin-alpha (EPO). This is a red blood cell growth factor, given by injection, which reduces fatigue and helps people to stay on ribavirin.
3. Severe anaemia is treated by blood transfusions.

Neutropenia is an abnormally low amount of neutrophils. These are white blood cells that fight bacterial infections. Peginterferon, boceprevir and telaprevir can cause neutropenia and this increases the risk of bacterial infections. A low neutrophil count can be managed by reducing the dose of peginterferon or by using injections of white cell growth factor called filgrastim (Neupogen).

Thrombocytopenia (low platelets) can be caused by serious liver damage.

This is because the hormone that stimulates platelet production is made in the liver.

It can also be caused by other medical conditions including HIV and is a side effect of peginterferon, boceprevir and telaprevir.

Platelets prevent bleeding by causing blood to clot. If platelets are very low, this increase the risk of internal bleeding which can be life-threatening.

Options include lowering the dose of peginterferon, using an oral medicine called eltrombopag to increase platelet counts or stopping treatment.

HCV treatment is usually stopped if it is severe.

I’m currently in month four of treatment. The aenemia is better and I’m still hepC negative. I can’t wait to get to month 12 and use the C word – CURE.

Other side effects – old HCV drugs

Tips on how to improve sleep and managing rash

Modern HCV drugs (DAAs) are easy to take with few side effects.

However, the older HCV drugs pegylated interferon and ribavirin had many side effects that explain why they are no longer recommended.

Some of these other side effects from pegylated interferon and ribavirin are listed below.

Rash

HCV treatment can cause many skin problems including injection site reactions, dry skin, itching and rash. Ribavirin can cause a rash that is usually mild and non-itchy.

Boceprevir,  telaprevir, faldaprevir and simeprevir* can all cause rash. This can range from mild to serious, and even life threatening.

It is important to let your doctor know as soon as a rash develops or if it gets worse when taking HCV treatment.

Use a moisturising cream every day to avoid dry skin. Hydrocortisone cream or oral antihistamines can help with a mild rash. If these do not work, ask to be referred to a skin specialist.

Photosensitivity

Simeprevir* and faldaprevir cause photosensitivity, which starts as soon as you begin taking them. Avoid being in the sun and wear sunscreen, hats and protective clothing throughout treatment.

If you have a serious skin reaction from sun exposure it is important to call your doctor.

Taste changes

Boceprevir and telaprevir can cause changes in taste (called dysgeusia). This can include an unpleasant or metallic taste in the mouth.

Things that may help include:

• Not using metal cutlery
• Reduce or avoid coffee, red meat and chocolate.
• Drink more water with meals.
• Add sugar to salty or bitter tasting food.
• Eat blander foods like chicken, turkey, tofu, dairy products or eggs.

Dry mouth

Peginterferon can make your mouth dry. 

This can cause dental and gum problems.

Visit the dentist before, during, and after HCV treatment.

A soft toothbrush reduces risk of bleeding gums, and brushing after each meal may help.

Being short of breath, coughing

If your feel breathless or develop a cough, tell your doctor.

Breathlessness can be a symptom of anaemia.

Common treatments for cough are appropriate: to drink more water, avoid smoky places and try over-the-counter cough syrups.

Insomnia

Not sleeping well adds to the impact of other side effects, especially those related to your mood and how you feel. 

Tips on how to improve sleep .

Your doctor needs to know if this is a problem, so that sleeping pills can be an option.

Irritability

Irritability can be a common side effect. 

It is not surprising that you feel bad if you have other side effects. This is why it is important that these are treated, especially if they affect your sleep.

Your friends, family and support network can help – especially if they are prepared for mood changes beforehand. Avoiding stress and using relaxation techniques including exercise, meditation and deep breathing can sometimes help.

Anal burning and itching; haemorrhoids

Telaprevir can cause anal burning and itching and (with no disrespect to Johnny Cash) this is sometimes referred to as the “ring of fire”.

Things that may help include:

• Wearing loose clothing and underwear made from natural fibres.
• Wash and dry the anus after going to the toilet.
• Keep the anal area dry. Baby powder can help. Try not to scrub or scratch.
• Over-the-counter creams and ointments, including preparation H, calamine lotion, and products that contain hydrocortisone or zinc oxide.
• Avoiding caffeine, alcohol and citrus fruits.

If these do not help, talk to your medical provider.

Other complications

HCV treatment can also cause other complications including thyroid (hormone regulating) or visual problems (blurred vision).

Tell your doctor about any symptoms and be sure that she or he takes these seriously.

* Note: The marketing authorisation for simeprevir has since been withdrawn by Janssen (on 1 May 2018) so this drug is no longer available in the EU. 

All through this time I fixed my mind on getting to the end of the year and know that I could beat this infection even if I cant beat the HIV.

Last updated: 17 August 2017.