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| for and by young people with HIV |
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medical info and health Unfortunately, it's still not possible to cure an HIV infection. Even so, there are now medicines that suppress the virus. These will increase the number of years you can expect to live. These medicines against HIV are called antiretroviral (or antiviral) drugs.
Are you already using medication, or has your doctor already brought up the subject, and would you like to know more about the medical side of things? This section gives you some basic information that can help you understand things better.
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how anti(retro)viral drugs work Unfortunately, it's still not possible to cure an HIV infection. However, the anti(retro)viral medication that is currently available is capable of suppressing the virus. As a result, your life expectancy will increase and there is less chance that you will develop AIDS. The medicines keep the virus from reproducing itself. The goal of the anti(retro)viral therapy is to reduce the viral load as much as possible, preferably to an undetectable level. So far, tests are not able to measure anything less than 20-50 virus copies/ml. Thanks to the anti(retro)viral drugs, an immune system that is intact can stay that way or an already damaged immune system can restore itself (at least partially). To combat HIV effectively, your doctor will prescribe a combination of usually three or more medicines. We call this a combination therapy, a 'cocktail' or a HAART (Highly Active Anti-Retroviral Therapy) regimen.
There are currently four classes of products that can be combined with each other. A standard combination therapy consists of a three or more products from one, two or three different classes: the Nucleoside Analogue (and Nucleotide) Reverse Transcriptase Inhibitors (NRTI), the Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTI) and the Protease Inhibitors. These drugs block the production of a new virus at different places during the self-reproduction process. People who are confronted with a virus that is resistant to several different anti(retro)viral drugs are given a fourth class of products: the Fusion Inhibitors. Other new classes, such as Entry Inhibitors, are being investigated. It is also possible that you will also have to take other medicines to prevent or treat other (especially opportunistic) infections.
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anonymous A couple of weeks after my diagnosis, I went to the HIV clinic of my hospital. There, at my first visit, I immediately received my prescription for the medication based on my results. I was quite taken aback, as I was still getting myself together, sorting things psychologically then on top of all this comes this medicine! I remember the day I came home from the hospital... I had a lot of problems in dealing with that decision. Luckily, I got prompt and good counsel. In the beginning I experienced some heavy side-effects. I had diarrhea and I felt nauseous. After about a month, I began to handle the medication better, and I began to feel a little stronger. I still suffered a little from fatigue though. Over a period of time, the medication has affected my energy level. I also feel a lot healthier.
Read another personal story: |
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the best time to start a treatment There is no simple answer to this and the best time to start will ultimately be different for each individual. When the combination therapy - also known as HAART (Highly Active Anti-Retroviral Therapy) - first became available, there was a tendency to treat HIV-positive people as quickly as possible and to suppress the virus as quickly and forcefully as possible. But over the years, people have become more inclined to wait before starting with this. International guidelines that have been drawn up by a panel of HIV experts offer an important basis for those who are deciding when to start. These guidelines are regularly revised and adapted in light of more recent information or the arrival of new medicines. The number of CD4 cells is a determining factor. In Belgium, you will be advised to start the therapy if the number of your CD4 cells has dropped to 250 or less. A normal CD4-cell count is above 500 CD4 cells/ml. In the Netherlands, you will be advised to start if your CD4-cell count is between 200 and 350. A CD4-cell count of that level doesn't mean that your health is really poor or that you will soon become sick. It does mean that your body could use some extra support to suppress the virus. Beginning at this level - 250 CD4 cells or less in Belgium and from 200 (or less) up to 350 CD4 cells in the Netherlands - one should consider starting the therapy. Another determining factor is the viral load. Due to the likelihood of fluctuations in the results of the measurements, it is always a good idea to delay making any decisions until both parameters (i.e. your CD4-cell count and your viral load) have been measured a number of times.
It is best to start the therapy immediately if you already have HIV related diseases. If you have symptoms pointing to the initial phase of an HIV infection (acute seroconversion or primary infection), you could consider starting with a therapy immediately, but then only using it temporarily. That way, it might be possible to postpone the moment at which you will have to start the treatment for real.
This therapy must be taken precisely according to the guidelines. That means you will be taking several pills every day over the course of many years. These pills often produce side effects, and the long-term effects are still not entirely known. Even if you are highly motivated, it will not always be easy to stick with this therapy. That's why communicating openly and honestly with your doctor or nurse is essential. They can help you if practical or personal problems make it difficult for you to comply with your therapy. And this relationship based on trust will form the basis for a good follow-up.
In order to determine the best moment to start, you will therefore need to carefully weigh the pros and cons for yourself. Sometimes, however, there can be urgent medical reasons for starting a therapy quickly. Also in that case, it is good to discuss all the aspects with your doctor, calmly and thoroughly.
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will your therapy work The success of a therapy depends on several factors, some of which are in your control:
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resistance To reproduce itself, HIV makes copies of itself. In doing so, it regularly makes mistakes. These mistakes or changes are called mutations. A medicine will have (much) less of an effect on some mutations of the virus. When that happens, the mutated virus is said to be resistant. Resistance means that a medicine is no longer capable of blocking the duplication of HIV. The HIV virus will simply continue to grow, despite the presence of the anti(retro)viral medication. Genotyping is a technique for determining resistance. It identifies the mutations. As long as you are not taking any medication, the mutated viruses are often less fit than the original or 'wild-type' viruses, so the wild-type viruses take over in your body. This all changes when you take anti(retro)viral medication. The medication suppresses the wild-type viruses, but the resistant viruses can continue to duplicate and will now gain control. The idea behind anti(retro)viral therapy is to stop the duplication of HIV as much as possible. But that doesn't work if resistant viruses are present. The treatment will fail, and your immune system will be under great pressure, which means you will have a greater chance of getting opportunistic infections. To avoid therapy failure, it is extremely important that the doses that you take of your medication are not too low. If the concentration of HIV medication in your blood is too low, HIV will only be partially suppressed and the selection of resistant viruses will be stimulated.apie falen te vermijden, is het ontzettend belangrijk om geen te lage dosissen van je medicatie in te nemen. Bij een te lage concentratie van hiv medicatie in je bloed wordt hiv maar gedeeltelijk onderdrukt en wordt de selectie van resistente virussen gestimuleerd. Your future possibilities for treatment can also be reduced as a result of what is known as cross-resistance. That is when your HIV becomes resistant to a product from a certain class of medications, while at the same time it also develops resistance to one or more other products from that same class that you might not even have tried yet. Your HIV can also be resistant to medicines from different classes. This phenomenon is called multi-resistance. For example, your HIV could be resistant to one or more Protease Inhibitors (PIs), to Nucleoside Reverse Transcriptase Inhibitors (NRTIs) and to Non Nucleoside Reverse Transcriptase Inhibitors (NNRTIs).
To prevent resistance from developing, doctors now prescribe a combination of medicines. By using multiple anti(retro)viral drugs at the same time, the virus is suppressed more powerfully. The less chance your HIV has to duplicate itself as a result of the anti(retro)viral therapy, the less chance that resistant viruses will be selected.
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side effects of the medication Like any other kind medication, the anti(retro)viral therapy can produce unpleasant side effects. These are usually felt most strongly in the initial phase, during the first few weeks. In some cases, however, they will continue for a longer period or only turn up after some time. Common complaints include diarrhoea, nausea, a tingling in your hands and feet, etc. But there are also more specific complaints like having difficulties sleeping, having weird dreams or skin problems. Side effects are unavoidable, but they will differ widely from person to person. It is quite possible that someone else will have very many problems with a certain medicine, while you won't have any problems with it at all. Don't let the experiences of others or something you might have read discourage you.
Never change anything in your cocktail on your own! That can increase the chance of resistance. If certain side effects get worse, if they don't go away or if they are too much to bear in the end, discuss this with your doctor. There may be solutions for this or it may be possible to adjust your therapy.
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anonymous It wasn't easy at first. I tried everything I could to get them down. There were some side effects, but the good results motivated me to keep going. |
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therapy compliance It is a real challenge to comply perfectly with your therapy, day in and day out. It demands a high level of motivation, especially if you are still young and not really sick yet. A number of factors can make therapy compliance more difficult:
Technical accessories can also help you to comply with your therapy. Many people with HIV use their cellphone to remind them (with a short alarm signal) when it is time to take their pills. Others use their watch or a special pillbox with a built-in alarm. You can also have your computer send you a message.
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anonymous There were several factors which helped and continue to help me stay with the therapy. First of all, I started at the eleventh hour. I already had AIDS. I was open to taking medication and I strongly believed in them. From the start, I was aware that the rigid regimen of correct dosage and precise timing would be influential on whether the therapy would succeed or not for me. Personally, I never go out the door without knowing how long I will be and if I have to take meds during that time. In the beginning, I had a little note with a big exclamation mark posted on the front door reminding me of what I must think about while outside. Then, in the rare event that I didn't have my meds with me, I would hurry back home as quickly as possible, or leave the movies or the restaurant!
Lees nog een persoonlijk verhaal: |
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support in therapy compliance It is important to take your medication on time, the entire dose at once, and according to the dietary instructions. This is also known as therapy compliance. Your compliance with the therapy will be able to postpone and possibly even prevent the development of a resistant virus. Therapy compliance is therefore extremely important and a determining factor for the success of the treatment. Complying properly with your therapy is not so easy for everyone in the longer term. Side effects, difficulties in swallowing your pills and forgetfulness all have an influence on your therapy compliance. Having good support in this regard is hardly something you can do without. Among other places, the centre where you are receiving your medical treatment can provide you with support. Being seen taking your medication is another thing that can form an obstacle for therapy compliance. It will be easier for you to take your medications if the people around you know that you need them. They can also help you to do it right. However, you may often find yourself in situations where people don't know about your use of medicines. This can lead to practical problems. A healthy balance is the key here. You don't necessarily have to decide everything about your medication all on your own. You can look together with your partner, parent or housemate at how involved you both want him or her to be in terms of your decisions. If you need to change your combination at a certain point, or if you decide to stop your medications (temporarily), your decision might also lead to both emotional and rational reactions on his or her part. His or her being involved is not to say that he or she is going to decide for you, but rather that - together with you - he or she can consider the advantages and disadvantages of certain options. Your partner, parent or housemate can help you in thinking about certain things, perhaps even in making a decision. If that person has been involved in a certain decision, or understands why you are making a particular decision, he or she will also be more inclined to support you in doing that. It can also be important for your partner, parent or housemate to know why you are stopping, for example because you want a short 'break' from the medicines, because of the side-effects, because your doctor considers it necessary on medical grounds, because it is psychologically too much for you, etc.
It sometimes happens that a parent or partner is (too) concerned and keeps urging you to take your medication. If you experience this as something negative, discuss how he or she could support you better.
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Greet, 23 years In the beginning my boyfriend didn't know that I was HIV-positive. I dared not tell him; but in the long run that became more difficult since I had pills to take. All the time looking for some pretext to sneakily take my pills in the toilet. Sometimes I managed not to take them and then I skipped a turn. Finally, I had to tell: so I took the bull by the horns, and spat it out. He had a pretty hard time with it at first, but stood by me. Now, I no longer have to sneak about. And indeed, he even often reminds me when I must take them. |
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tips for support in therapy compliance
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improve health There are different ways to keep your health stable or even to improve it. The importance of therapy has been discussed extensively in the previous sections. Here are a few additional elements that can be beneficial to your health.
Some people who are HIV positive also use alternative or complementary medicines to treat certain side effects.
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alternative medicines Perhaps you are looking for a way to enhance your anti(retro)viral therapy, or perhaps you want to do something extra to strengthen your body. People usually take vitamins or minerals for this purpose. There are also various kinds of alternative therapies such as homeopathic medicine or acupuncture. Yoga or tai chi can also be used for this. At this moment, there are no alternative or complementary treatments that can effectively cure people of HIV. Alternative medicines can play a role in relieving or remedying certain side effects of the medication, such as diarrhoea or liver problems. They can also be useful in the treatment of a number of very common complaints, such as skin problems, fatigue or a lack of energy or enthusiasm. Some believe that certain alternative medicines can strengthen the immune system, but so far there has not been any real evidence for that. Some alternative medicines, including certain herbs like St John's wort, can be dangerous in combination with your anti(retro)viral therapy. They interact with the anti(retro)viral medicines, which is to say that they will have an influence on the effectiveness of those medicines. As a result, your anti(retro)viral therapy could work less effectively. In that case, the virus would no longer be maximally suppressed, which means it could become resistant to the medicine. Always inform your doctor about any other medicines you are taking. Stichting Middelen has a brochure on this topic, and you can find a digital version of it on the site of Hiv Vereniging Nederland: alternative medicines |
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opportunistic infections Opportunistic infections are infections or inflammations that are caused by tiny organisms like bacteria, moulds, viruses, or parasites. In a normal immune system, these would usually lead to rather harmless illnesses, but in a severely weakened immune system, they can become serious and life threatening. These opportunistic infections can be treated with medication. If your immune system is severely impaired, your doctor can prescribe prophylactic medication to prevent you from getting a certain infection. These infections are serious. As a result of the treatment with the current strong anti(retro)viral combination therapies, the immune systems of most people with HIV are seldom so impaired that they are at risk of developing opportunistic infections. That means those infections are much less common now than they used to be. Some examples of opportunistic infections are:
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anonymous I have already been taking medication for a long time, but fortunately I've never had any real problems with my health so far. I do have to take Bactrim Forte ® every day because my T4-cell count is too low, but that should prevent me from getting PCP. It means I have to take one more pill every day, but it doesn't give me any side effects. |
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anonymous When I started taking the medication, my body was covered by Kaposi lesions. Thanks to my current combination therapy, those spots have disappeared and I'm feeling much better about my body. For me, my therapy has meant a huge improvement. |
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PEP PEP (Post Exposure Prophylaxis) is a treatment lasting a month for someone who has only very recently been exposed to HIV. The treatment must be started very quickly: preferably within two hours, and in any case within 72 hours. The pills are likely to reduce that person's chance of becoming infected with HIV. A PEP treatment can cause serious side effects. That's why a doctor will not prescribe PEP to just anyone after an unsafe sexual contact. First, a careful risk assessment must be made. The policy regarding the prescribing of PEP varies from region to region. Individual doctors may also take different things into consideration. The small chance that someone has contracted HIV through unsafe sex needs to be weighed against the substantial disadvantages that go along with the treatment. If one of the partners is known to be HIV positive, there will obviously be more of a reason to use PEP after an unsafe contact (see also 'sexuality and relationships').
In the Netherlands, you can contact the Municipal Health Service (GGD) or an HIV Treatment Centre. In Belgium (Flanders), get in touch with your family doctor or the emergency medical services as soon as possible if you have had an accident (for example if a condom breaks or slips off) during a sexual contact in which one of you is HIV positive. |
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