Haemophilia Foundation Australia

HIV drug side effects

From National Haemophilia, September 2008

In the last few years, improvements to the types of HIV drugs and the way they work have meant that many people with bleeding disorders and HIV are living longer and feeling better with their HIV than they have for a long time. With good access to the latest HIV drugs in Australia, it’s easy to forget that these are new drugs, and that we are still learning about side-effects. A recent alert about possible side-effects of the HIV medication darunavir was a timely reminder about this.

Darunavir/Prezista Alert

In June 2008 Tibotec, the manufacturer of Prezista (darunavir), issued a precaution for doctors who prescribe HIV medications about the risk of developing drug-induced hepatitis when taking the medication. They had received reports of a very small number of cases, but they noted that people with pre-existing liver problems, eg if they are co-infected with hepatitis B or C, are at greater risk of experiencing problems.

What about people with bleeding disorders?

What does this mean for people with bleeding disorders who are co-infected with HIV and hepatitis B or C?

HFA is aware that some members have been prescribed darunavir/Prezista. Australian doctors who prescribe HIV medications have been alerted about the problem and the doctors are monitoring their patients who have been prescribed darunavir.

What are the recommendations of health professionals who provide care to people with bleeding disorders and HIV/hepatitis co-infection?

Dr Edwina Wright, HIV specialist at The Alfred in Melbourne, notes,

“Because people with haemophilia and HIV are often co-infected with hepatitis C and less so hepatitis B, it is my usual practice to ask patients to telephone the clinic if they become unwell after commencing a new drug regimen. This especially includes reporting an increased rate in their number of bleeds or the onset of unusual bleeds. While I routinely check patients’ liver function tests within four weeks of starting a new antiretroviral regimen to exclude signs of drug-related liver toxicity, I encourage patients to report as soon as possible any signs that might suggest that the drug is causing liver toxicity.”

The key message for people on HIV medications is that it is important to keep an eye on your health and stay in touch with your health care team.

• Look out for signs of liver toxicity: many HIV medications, like darunavir, can sometimes be associated with damaging effects on the liver. Contact your doctor immediately if you experience any of the following symptoms: dark urine, yellowing of the skin, abdominal pain, general itchiness, decreased appetite, nausea, vomiting or fatigue.
• The group of HIV drugs called protease inhibitors (darunavir is one of these) has also been known to increase bleeds or cause unusual bleeds occasionally in some people with bleeding disorders. If you have any unusual bleeds, talk to your HIV specialist and your haemophilia treatment team.
• However, don’t stop taking your HIV medications unless your doctor advises you to! Stopping medications may increase the likelihood of drug resistant virus and may reduce CD4 levels leading to opportunistic infections, especially if the CD4 count is already low. Talk to your HIV specialist if you have any concerns.

What about HIV medications generally?

• Some medication side-effects can be reduced. Talk to your HIV specialist or HIV pharmacist about this. HIV organisations are also good sources of information – for example, the Australian Federation of AIDS Organisations’ very helpful Managing side-effects booklet.
• Make sure you take note of any medication side-effects and report them to your doctor. Ask for the product information notes for your HIV drugs and know what to look out for. Contact your doctor immediately if you have rash, fever, vomiting, and/or unexplained muscle and joint pains.
• Taking care of your health is a team effort. Make sure you stay in touch with your HIV and hepatitis specialist and your Haemophilia Centre. As you know, dealing with all the different issues is sometimes complex. Your team will work together and will need to share information to make sure you receive the best care. But they need you to talk to them as well to get the relevant information.

Healthy living with HIV drugs

How do you make the best of your health if you are taking HIV medications?

There have been a lot of new initiatives to help people with HIV manage to take all of their pills on time and monitor how well their treatment is working. Talk to your HIV specialist or HIV pharmacist about these if you would like more information.

Side-effects of HIV medications can also lead to other problems, such as an increased risk of cardiovascular disease, diabetes, osteoarthritis and other conditions. This might seem like yet more potential health problems for people with bleeding disorders and HIV – and they already have plenty to deal with. However, these are actually health and lifestyle issues for everyone as they grow older.

So, how do you help prevent these problems and maximise your health? Current research has some pointers:

As Phillip Keen writes in the July 2008 Positive Living,

The risks of developing cardiovascular problems, diabetes and osteoarthritis can be significantly reduced by stopping smoking, maintaining good nutrition, and increasing exercise or activity. Managing alcohol and other drug use, and staying in control of mental health and stress levels are, as always, other important factors affecting wellbeing.

But changing lifestyles and old habits can be pretty challenging. Getting a new cookbook and gym membership are the easy bits. Everyone who sets out to live a healthier lifestyle will have setbacks along the way. Illness, motivation, lack of money, and many other things can become barriers. In the end, the process is about finding a way to balance our goals and strategies about healthier living with a livable level of fun and indulgence.

Wondering how to go about making health or lifestyle changes in a balanced way?

• Talk to your Haemophilia Social Worker or Counsellor who can help you with planning or referrals.
• The July 2008 issue of Positive Living also includes personal stories of six people with HIV and how they incorporated healthier lifestyles into their routines and coped with setbacks.