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Your treatment

The combination therapy
There are no medications that can cure you of HIV and it is not likely that there will be any such medications in themedicijnen coming ten years. But with the medicines that are now available, you can suppress the virus for the rest of your life. Because you will be using a combination of medicines, the treatment is referred to as the combination therapy. The combination therapy usually consists of three different HIV medications. It could be that you will take less than three pills, since one pill can contain more than one active ingredient. The combination therapy involves taking one to six pills, once or twice a day. That will not be a temporary treatment, but one that you will have to continue for the rest of your life. Since the HIV medications will suppress the virus, your immune system will grow stronger. You can grow old with HIV, but it is very important that you take your medicines every day.

Why do you need to use more than one kind of medicine?
HIV is a virus that makes sloppy copies of itself. Among all the sloppy copies, there can sometimes be one that is too smart for a particular HIV medication. That particular variation of the virus can continue to make copies of itself, so if you only used that one HIV medicine, it would be like you were not using any. This characteristic of HIV is known as resistance forming. If you use a combination of at least three HIV medications at the same time, it is nearly impossible for the virus to become resistant. But that will only work if you take your medications every day.

When should you start?
If you go to hospital with your HIV, you will not always get a prescription for pills immediately. That does not mean that your internist is not taking your condition seriously. It often makes more sense to wait a while before you start taking pills. The decision about when to start is based on any symptoms you might have and on the results your blood tests. Those tests tell you how much virus there is in your blood and how strong your immune system is. Your internist will advise you about whether or not it is smart for you to start taking the medications. But you also have a say in the matter! What does the decision about whether or not to start depend on?

Swallow or inject?
In almost all cases: swallow! If you have HIV, you will need to start taking pills at some point. A pill is a very practical form of medication: as long as you have a small bottle of water with you, you can easily take your pills anywhere. A few HIV medications also come in a liquid form for children, which makes it possible to give them a lower dose. There is also an HIV medication that you can self-inject into your blood, but that is only prescribed for people who have a type of HIV that is resistant to many other kinds of medicine.

Your CD4-cell count
These days, most people with HIV start taking medicines when their CD4-cell count is between 350 and 500, but the ideas about the best time to start are changing as time goes on. If your CD4- cell count is lower than 200, you run the risk of developing troublesome infections. If you only find out that you have HIV when your CD4-cell count is lower than 200, your internist will urgently advise you to start taking HIV medications immediately. If your CD4-cell count is above 500, your immune system is still strong enough that you usually will not need to start using HIV medications. For a small number of people with HIV it can take longer than ten years before their CD4-cell count drops sharply. For others, that will happen after a couple of years. There are also people with HIV who will need to start taking medicines immediately, because their immune system is getting weaker very quickly.

Fewer than 200 CD4 cells?
In that case, your internist will prescribe a prophylaxis for you. Those are medicines that will prevent you from getting infections that a normal immune system would otherwise be able to fight off.

Your viral load
If your viral load is over 100,000 time after time, it is very like that your CD4-cell count will drop rapidly. In that case, you will be advised to start taking HIV medications.

Health problems
If you have many different health problems, or serious ones, that could be a reason to start taking HIV medications. You may start feeling less tired once you have been taking the medicines for a while, for example. If you have Hepatitis C, it could be a good idea to start earlier with HIV medications. HIV medications will help strengthen your immune system. With a good immune system, your Hepatitis C will progress less quickly.

The risk of passing your HIV on to others
If you start using HIV medications, your virus will usually become undetectable within a couple of months. That means that you will have very little of the virus in your blood at that point. If the virus has been undetectable for at least half a year and if you do not have any other STIs (sexually transmitted infections), the chance is extremely small that someone can get HIV from you. That could be a reason for you to begin the treatment earlier.

Your feeling
Many people want to wait as long as they possibly can before starting with HIV medications. You might be worried about the possible side effects and want to live ‘on your own strength’ for as long as you can. Others choose to go ahead and start with the medicines because then they will have overcome that obstacle or because they are eager to do something about it themselves. There are quite a lot of who people worry about when the best time is to start. Simply starting might actually give you peace of mind. That way, you will not always have to ask yourself each time you hear the results of your blood tests if you should start now or wait longer. But you might also be afraid that starting with the medications will make you feel more like a patient. Most people who have already started will tell you that it is not so bad. Most have not had any problems at all with side effects. Some suffered from a side effect in the first few weeks, but that got better or disappeared completely as time went on. Others continue to have problems with side effects.

You will find it easiest to stick to your pill-taking schedule and you will be better prepared for any side effects if you start with the medications when you feel ready to start.

Which groups of HIV medications are there?
The HIV virus makes use of a person’s CD4 cells to make copies of itself. That means that the cells that HIV has entered are infected. There are (in 2010) 24 active ingredients that fight HIV. Those 24 medicines can be divided into groups, each of which works in a different way. A combination therapy consists of at least three different medicines from at least two different groups. What are the differences between those groups?

  1. Entry inhibitors (ccR5 inhibitors and fusion inhibitors) prevent HIV from entering into the CD4 cell. Each of the two subgroups does that in a different way.
  2. NRTIs and NNRTIs prevent HIV from entering into the nucleus of the cell, so that no new HIV can be produced. Each of these two subgroups does that in a slightly different way.
  3. Integrase inhibitors prevent the HIV virus from installing its own genetic material within the genetic material (DNA) of the CD4 cell.
  4. Protease inhibitors make it more difficult for cells that are already infected to produce new HIV virus.

Which HIV medications are you going to use?
Your internist knows which medicines you will be able to combine with each other. Research has shown which combinations will successfully suppress the virus. Before you start or switch over to new medications, a blood test can determine whether your virus is resistant to any of the medicines. You can nearly always choose from several different possible combinations. An internist is not able to determine the very best combination for you solely on the basis of all kinds of blood tests and other medical information. It really makes sense for you to be actively involved in deciding, since the decision largely depends on things that will make a difference to you. And you do not have to have studied medicine to know those things! What should you consider when making that choice?

Once or twice a day
How important is it for you to take your pills once a day instead of twice a day?

Number of pills per day
How important is it for you to take just one pill each day? Or would you not mind having to take two, three or four pills each time?

Allergic reaction
How important is it for you not to run a risk of having to switch to new medicines after a couple of days or weeks because it turns out that you are allergic for the ones you started taking? With some HIV medications, the chance of an allergic reaction is about one in twenty. That holds for abacavir (brand names: Kivexa, Trizivir and Ziagen) and nevirapine (brand names: Viramune and Nevirapine Teva). With other medicines, the risk of an allergic reaction is much smaller or can be ruled out altogether. With one HIV medication (the above-mentioned abacavir) it can be determined in advance whether or not you are allergic to it, but with other medicines you will need to wait and see. You do not have a greater chance of having an allergic reaction if you often have rashes.

Side effects
Many people who take HIV medications have few if any problems with side effects. Don’t let the information leaflets scare you for no reason! And even if you do have problems with side effects: if you don’t take your pills, you will have much more of a problem with diseases because your immune system will only get worse and worse. With many HIV medications, there is only one side effect that may actually occur commonly. And that side effect will often become less intense or go away completely in a few weeks. In choosing a combination therapy, it makes sense to think about how you would feel about a certain side effect. Which side effects do you really want to avoid?

  • Dizziness, sleeping restlessly, having strange dreams or other psychological aspects (these side effects are rather common with Atripla and Stocrin).
  • Yellowish skin and/or eyeballs (this side effect is rather common with Reyataz).
  • Diarrhoea (this side effect is rather common with Kaletra).
  • Lipodystrophy (that is to say the redistribution of fat on the body; this side effect is rather common with Combivir, Retrovir, Trizivir and Videx).

Tell your internist!
Is your internist aware of what is important for you? Does he or she know which side effects you really want to avoid? Tell him or her, since it can make a difference in choosing the HIV medications you will be taking.

Flexibility in terms of pill times
How important is it to you that you can be as flexible as possible in terms of exactly when you have to take your pills? With some pills it is advisable to take them no more than one hour later or earlier than the time set for yourself to take them; with other pills you can take them up to two hours earlier or later.

With food or on an empty stomach
How important is it to you that you do not have to worry about eating food or not eating food when you take your pills? Some HIV medications need to be taken with food; others need to be taken on an empty stomach. This may seem unimportant, but any rules about eating or not eating food with your medicines mean that you cannot be as casual about how you take your medicines.

Few interactions
How important is it to you that an HIV medication will have few interactions with other kinds of medicine? HIV medications and other kinds op medicine can influence each other. Those other kinds could be prescription medicines but also medicines that you can get without a prescription, alternative medicines (such as St. John’s wort), or party drugs (such as XTC).

Getting pregnant
How important is it to you that the HIV medications you use will allow you to get pregnant safely? That way, you won’t have to switch to another kind of medicine if you get pregnant.

Watch out for the information leaflet!
You can get depressed from just reading the information leaflet that comes with your HIV medications. What a laundry list of miserable conditions! Manufacturers are required by law to include any possible side effects in this list, even if they are extremely rare or if it is not entirely clear whether the symptom is related to the medicine or to HIV itself. It could be a good idea to read through the information leaflets once so that you know if a symptom you might have could have something to do with your medicines. But you should realise that the side effects generally only show up in a very small percentage of the users. There is a booklet for almost every kind of HIV medication published by the manufacturer that includes the most important information from the information leaflet, but then written in language that is easy to understand. Ask your HIV nurse about it.

Redistribution of fat
The redistribution of fat (also known as lipodystrophy or lipoatrophy) is probably the side effect that people with HIV fear the most. The redistribution of fat will lead to one or sometimes more of the following: sunken cheeks; thin or thick arms, legs, breasts and/or stomach; a lump of fat in your neck. The information leaflet for every HIV medication is required to mention the risk of the redistribution of fat. In practice, the medicines that are known to actually cause the redistribution of fat are only prescribed if there is no other choice. If you are just starting with HIV medications now, you will not get those medicines.

Discuss side effects
If you want to have a realistic idea about the side effects of a particular kind of medication, you can discuss that with your internist or HIV nurse, for example. You might like to have things made more concrete. Two in three users have no problems with side effects from a certain type medication. One in three users has problems with a certain side effect. For one person, the side effect will disappear after about six weeks. For another, the side effect gets better, but never goes away completely. Yet another person may have so much trouble from a side effect that he or she has to switch to a different medication.

If the side effects don’t go away, you can switch
If you have any health problems, discuss those with your internist or HIV nurse. He or she can determine whether this is a side effect and if anything can be done about it. If you are starting with HIV medications now, there is no reason for side effects to limit you in your daily life. That is why it is important that your internist knows how bad any side effects are that you might have. If a side effect does not go away and it bothers you, you can switch to a different combination. Never simply stop taking your medicines on your own. If you switch to other HIV medications at your doctors advice due to the side effects, you will not limit your chances for the future. If your new medicines are not as good as you had hoped, you can return to the old ones or switch to yet another combination without any problems.

Tell your internist
Tell your internist or HIV nurse about any other medicines that you are using, but also about any alternative medicines or (recreational) drugs that you use.

Why does the package have more then one name for the same medicine?
The package naturally has the name of the manufacturer, along with both the brand name and the generic name of the medication. For example, Reyataz is the brand name and atazanavir is the generic name of the substance. Doctors often use the generic name, since that is common in science, while the brand name is used in the pharmacy, because the brand name is printed larger on the packaging. Sometimes a package of medicine will list more than one generic name. That is the case with a combination pill, which contains more than one active ingredient. Atripla, for example, contains emtricitabine, efavirenz and tenofovir, and Kaletra contains lopinavir and ritonavir. One day there will probably be medicines for which different manufactures will bring exactly the same active ingredients to market using different brand names. For example, both Viramune and Nevirapine Teva contain the same active ingredient: nevirapine.

Taking your medicines every day
If can manage to comply with your therapy, your pills will continue to work for the rest of your life. You comply with your therapy if you always follow the guidelines for the treatment:

  • Take your pills every day. In other words: Don’t forget! That can sometimes be difficult, for example if you are not in your normal rhythm (such as when you are travelling) or if it has become such a routine that you no longer even think about it.
  • Take into account the maximum flexibility you are allowed in terms of exactly when you take your pills. This is different for each combination. And one internist or HIV nurse might give stricter advice than another: you can always take your pills up to one hour before or after the time you have set for yourself; with some combinations, up to two hours’ flexibility is allowed.
  • Take into account any rules about eating or not eating food with your medications. With some HIV medications you either have to eat food or you cannot eat food. In some cases, that is because food will help your body absorb the medicines better. In other cases it is to help prevent side effects.

When is your pill time?
Before you start, you can decide what will be most practical time for you to take your pills everyday. Many people take their pills at a set time, for example at nine o’clock in the morning or half past ten in the evening. Others take their pills when they have breakfast or when they go to bed. Of course they can only do that if their combination allows them to be reasonably flexible in terms of time and if they get up and go to bed at more or less the same time each day. In choosing your pill time, you can take into account when you need to go to work, your bedtime and the possibility of sleeping in later on some mornings. Another thing to consider is if you need to eat food when you take your medicines, or if you have to take them on an empty stomach. And what about other practical matters? Do you want to take your pills without anyone else noticing? Or does that not matter to you? Will you be using an alarm clock (for example on your mobile phone) to remind you when it is time to take your pills? There are little pillboxes that you can hang on your key ring. That way, you can always carry around a reserve set.

Discuss with your HIV nurse the best possible pill time for you. He or she can help you think about it and tell you about other people’s experiences in that regard.

Oops! Too late! I forgot to take my pills!
If once or twice you forget to take your pills or only take them much later than you are supposed to, that is not a huge problem. So you don’t need to panic. After a while, many people become more relaxed about that. If you discover that you have forgot to take your pills, go ahead and take them straight away. And then simply take your next pills at your next scheduled pill time. If only discover that you have forgot to take your pills when your next pill time comes round, with some types of medicines it is advisable to take a double dose, but with others that it not the case. You can ask your HIV nurse about what you should do with your medicines in that case.

If you regularly forget your pills or take them much too late, there is a good chance that your pills will stop working. If that happens, your virus can become resistant to your HIV medications. And other HIV medications from the same group will often not work anymore either. There is a limit to the number of times you can switch to new medications due to resistance. It is better to prevent that from happening by taking your pills every day.

Taking someone else’s pills and giving your pills to someone else
Take only the HIV medications that you get from your own doctor. It is not a good idea to take someone else’s pills or to send your pills to others, for example to family members who live abroad. Only if you know for sure that the other person takes exactly the same HIV medications as you and that those contain the same dose as yours can you borrow someone else’s pills if you have forgot yours. But if you are not completely sure about that, you should definitely not borrow them. That is because there are many different pills against HIV. And once you begin taking HIV medications, it is not a good idea to stop taking them unless you have discussed it with your doctor in advance. If you simply stop taking your HIV medications, or if you do not take all of them, those pills might no longer work properly for you in future.

Summertime, wintertime
When you gain or lose an hour with the switch to summertime or wintertime, you can simply keep taking your pills at the normal time(s) you have chosen. Every combination allows you up to one hour’s flexibility.

Vomiting
Discuss with your HIV nurse what you must do if you have to vomit within three hours after you have taken your pills. That way you will know what to do in case that ever happens.

Trial
Your internist might ask you to take part in a trial (study). In that case, you will be asked to use a new medication or new combination. Without trials, today’s medicines would not be available, but be aware that you are completely free to decide for yourself whether or not you want to participate in such a study. Your internist might have a reason (and good intentions) for wanting you to take part in the trial, for example if he or she needs to find enough people to take part in the study.

Flu shot
Ask your internist or HIV nurse if it is a good idea for you to get a flu shot from your family doctor (GP) in October.

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