Pre-fix: A guide for people with Hep C or HIV who inject drugs

On treatment

Sticking to treatment

Treatment for Hep C (hepatitis C) or HIV means taking pills every day. Remembering to take pills every day can be hard, regardless of whether or not you are using drugs. However, missing doses is a problem for your treatment. If you have HIV, missing doses can allow the virus to become resistant to treatment. Once a virus is resistant to a certain drug, that drug will no longer work for you and you will have to change drugs. This means there will be fewer options for your treatment in the future. If you have Hep C, 
missing doses lowers the chance of treatment clearing the virus. It can also lead to resistance if you are taking the newer Hep C drugs called direct-acting antivirals.

If you are having trouble taking meds every day, check out this list of things you can do:

  • Learn about your meds. Find out more about how your Hep C or HIV meds work and why it’s important to take them. The more you understand about treatment, the more likely you are to stick to your schedule.
  • Learn about how to take your meds. Find out when you have to take your meds and whether they have special instructions, such as taking them with food. Also, find out if they need special storage, such as being kept in the fridge. Ask your doctor, nurse or pharmacist to write all this information down for you.
  • Have extras doses on hand. If you can, take extra doses with you when you go out or stash extra doses at places you regularly go to during the day like a harm reduction program or methadone clinic, just in case you need them.
  • Pick up your meds daily from your pharmacy. Some pharmacies will let you pick up your medication every day. This is a good idea for people who don’t have anywhere to store their pills.
  • Get a pillbox. Use organizer gadgets like pillboxes so that you can organize your meds for the day or week. Using nail polish or tape, mark down the time you need to take the pills on the box.
  • Set an alarm for when you have to take your meds. Set your cellphone, pager or watch to go off at the time you need to take your medication.  You may be able to get your clinic or pharmacy to text you reminders to take your meds or ask a friend to remind you.
  • Talk about any problems you are having. Your doctor, pharmacist, nurse or a peer worker can help you. Sometimes people feel like they are doing something wrong if they miss a dose, but many people need help to stick with treatment.
  • Ask about medication support programs. You may be able to get support to help with sticking to your medication schedule (sometimes called adherence support programs).

How to tell if treatment is working?

The treatments for Hep C or HIV are monitored using blood tests that check for levels of Hep C or HIV in the blood. These tests are called the Hep C viral load test and the HIV viral load test.

During Hep C treatment, Hep C viral load may be measured at different times. Ideally, the viral load will drop so low that it can no longer be detected by the end of treatment, though this is not always the case. With some medications, if your viral load drops in the early phases of treatment you are more likely to clear the virus. If Hep C viral load remains undetectable three or six months after completing treatment, you are said to have cleared the virus and to be cured of Hep C. This is also sometimes called a sustained virologic response (SVR).

During HIV treatment, HIV viral load should drop and remain low. Most people are able to reach an undetectable HIV viral load within three to four months of starting treatment. With HIV, undetectable does not mean you are cured of the virus. HIV is still in your body and the virus can still pass on to other people.

Once HIV is under control, the immune system can get stronger and CD4 counts usually increase. Often, the CD4 count does not change as quickly as the HIV viral load. If your HIV viral load never becomes undetectable or it begins to increase you may need to change the combination of HIV medications you are taking.

CATIE has more information on How to know whether treatment is working.

Using street drugs while on treatment

Hep C and HIV meds can change the way street drugs affect your body. Some of the medications boost the effect of street drugs. If you are planning on using after you start treatment, consider starting to use slowly. Try half a hit of what you normally use and then wait to see how it affects you.

Certain drugs can cause serious harm if you are taking HIV meds. For example, ketamine, or K, can damage your liver. Consider stopping or switching to a different drug when you start HIV treatment.

If you are taking HIV meds and are on methadone, it’s important to know that some HIV meds decrease the strength of methadone, which means you could go into withdrawal. HIV meds can also change the amount of buprenorphine in your body. Check with your doctor about whether your dose needs to be adjusted.

Using street drugs may make it harder to remember to take your medications, but there are many tricks you can use to keep to your medication schedule. Street drugs can also change the way Hep C or HIV medications work. Be as open as you can with your doctor about the street drugs you use.

If you’re using certain drugs while taking Hep C medications, the meds may not work as well and you’ll have a lower chance of clearing the virus. If you’re using certain drugs while taking HIV medications, the virus may become resistant to the meds and you will need to change medications. Talking openly to your doctor can help you learn what’s safe to use, so your Hep C or HIV treatment will be effective.

Although there isn’t a lot of information on how Hep C and HIV meds interact with different street drugs and alcohol, it’s still a good idea to talk to your doctor, nurse or pharmacist about all the drugs you are taking. While we don’t know all the possible interactions, he or she may be able to give you information about ones we do know about. You can also ask people who use drugs and are on Hep C and HIV meds about their experiences.

On other medications? Making sure it all works together

Sometimes when people have more than one health issue the medications they take can react with each other. These are called drug-drug interactions. This means that one medication can change how another medication works and can affect the side effects it causes.

Talk to your doctor or pharmacist about all the medications you take — including herbal medicines, vitamins and supplements and over-the-counter drugs — so they can spot potential drug-drug interactions. Using the same pharmacy to get all of your medications can also help prevent drug-drug interactions.

Managing Hep C or HIV treatment side effects

All drugs have potential side effects, although not everyone will experience side effects. Some of the side effects from Hep C or HIV treatment can feel like withdrawal, so you’ll need to pay attention to your body more carefully when you start treatment. Common side effects of Hep C and HIV treatment include tiredness,  diarrhea and nausea. Certain side effects are more common with particular drugs, for example, diarrhea with the HIV drug ritonavir (Norvir). The good news is that over time side effects often lessen. With Hep C treatments that consist of DAAs, the side effects are usually temporary and generally mild or moderate.

“I had some of the side effects... Weighing it out, there were more ups than downs.” — Rob

If you are having trouble dealing with side effects, don’t stop taking your meds. Instead, talk to your doctor, nurse or pharmacist. There are many things you can do to manage side effects and stay on treatment. Complementary therapies such as herbal medicines and Aboriginal traditional medicines can also help with side effects. If you are planning on taking any of these, talk to your doctor beforehand to make sure they will not interact with your Hep C or HIV meds.

Below is a list of common Hep C and HIV medication side effects and how you can manage them.

Hep C and HIV meds can change the way street drugs affect your body.

HIV or Hep C medication 
side effect

Description

What you can do

Nausea

This is the very unpleasant feeling of being sick to your stomach and wanting to throw up.

Don’t skip meals, but eat many small meals. Try eating foods like bananas, dry toast, apples, rice, noodles or soup. Avoid greasy foods and milk products.

Take many sips of water. Try to drink about two litres of water throughout the day.

Ask your doctor about medications to control nausea.

Headache

This is when you have pain in your head. The pain may feel dull, sharp or throbbing and it may last for a short time or a long time.

If you have headaches that are severe, last for more than a few hours or come back often, you should tell your doctor and visit a specialist.

Check with your doctor about which pain medications are OK for you to take.

Headaches can happen when you don’t drink enough water or eat often enough. Be sure you are drinking enough liquids.

Diarrhea

This is when you have loose or watery poo. Losing too much water from your body can cause dehydration.

Drink lots of water. Avoid drinks with caffeine like coffee, tea and pop.

Eat bananas, plain rice, dry toast and applesauce.

Talk to your doctor about medications to help control diarrhea.

Only for HIV treatments:

 

 

Skin rash

A rash or itchy skin may develop during the first few weeks of taking HIV medications.

Most often, a rash or itchy skin will go away on its own. However, a rash may be a sign of an allergic reaction to a medication. Report any rash to your doctor immediately.

For more info on other side effects from Hep C meds and how to manage them, see Managing Hep C Side Effects.

What do you do if you want to change your HIV treatment?

If you find that your HIV medication is not decreasing your HIV viral load, the side effects are too hard to handle or it is hard to stick to the treatment schedule, you may want to switch treatments. Work closely with your doctor to figure out what treatment could work better for you.

Check out Changing treatments in A Practical Guide to HIV Drug Treatment.

After Hep C treatment

After you’ve completed Hep C treatment, you will have a final Hep C viral detection test three or six months later to see if it was successful. This test is important because it is the one that confirms you have cleared the virus. Regardless of the outcome, there are things you can do to live well after Hep C treatment.

“I have done the treatment successfully and that definitely does not mean that I’ll never get Hep C again. If I’m not careful just like anybody else, I will get Hep C.” Bill

If treatment cleared the virus: If your liver is very injured (cirrhosis), your doctor will want to test you for liver cancer on a regular basis. If you have liver damage, you may experience some of the effects of that damage, such as tiredness or problems concentrating. For many people, the liver will heal itself over time. For more information on taking care of your liver if you have cirrhosis, check out Understanding Cirrhosis of the Liver: First Steps for the Newly Diagnosed.

If you have cleared the Hep C virus, you can get Hep C again. Going through Hep C treatment won’t protect you in the future. Knowing how Hep C can pass from person to person will help you take steps to protect yourself and others. Check out the sections on safer drug use and safer sex to learn more.

If treatment did not clear the virus: If you tried treatment and it didn’t work, you may feel lots of different emotions like anger, frustration or sadness. You may want to talk to a friend, peer, counsellor or family member about how you are feeling. Focus on doing what you can to reduce liver damage and to live and feel well. Check out the section “Living as healthy as you can with Hep C or HIV." You may want to try treatment again in the future.