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I just found out I’m HIV positive
Do I have HIV or need to test?
I just found out I’m HIV positive
Do I have HIV or need to test?
ART stands for antiretroviral treatment. It is also called therapy or combination therapy or HIV treatment.
HIV drugs are called antiretrovirals (ARVs) because HIV is a type of virus called a retrovirus.
ART nearly always includes at least three active drugs.
Some pills contain more than one drug and some single pills contain a complete combination.
ART has reduced HIV-related deaths and illnesses in every country.
More than 15 million people are now on treatment worldwide.
ART works for adults and children, for women, men and transgender people. It works no matter how you were infected, whether this was sexually, through injecting drug use, at birth, or by blood or blood products.
Taking drugs exactly as prescribed reduces the virus in your body to tiny amounts.
Even though you will still be HIV positive, ART reduces the chance that you can transmit HIV.
Some cells in your body will always contain HIV. But research to find a cure might even overcome this in the future.
This is a big change in 2015.
We now know that HIV can cause serious problems even with a strong immune system.
Treatment is very effective and easy to take. It often involves only one or two pills a day.
How quickly does HIV progress without ART?
HIV infection progresses at very different rates in different people.
Nearly everyone who is HIV positive will need treatment at some time.
This includes people whose HIV progresses very slowly.
- At least 1 in 5 people progress quickly. Their CD4 count will drop to less than 350 within 2 years of infection.
- Up to 50% of people could take 2-10 years (average of 5 years) until the CD4 count drops to 350.
- About 1 in 4 people keep a CD4 count above 350 for 10 years without treatment.
- Less than 1 in 20 people keep a CD4 count above 350 for 15-20 years without treatment.
- Only 1 in 10,000 people keep a high CD4 count without treatment for more than 20 years.
ART is now recommended when diagnosed regardless of your CD4 count even when this is still high.
You and your doctor will discuss the best time to start treatment. This will usually take place over several visits.
ART now has a very low risk of serious side effects.
Mild side effects are more common when you first start. These are usually easy to manage and improve within the first few weeks.
If side effects are difficult or do not improve, you can change to other drugs.
Your quality of life should be as good or better on ART than before you started.
All medicines have a risk of side effects (or adverse events). This is a real and common worry.
- Most side effects are usually mild.
- It is easy to switch to another HIV drug or to use medication to manage the side effect.
- There is only a small risk of serious side effects. It they occur, they should be picked up by routine monitoring.
- Within a few weeks of starting, most people find that ART is much easier to take than they expected. It usually becomes an ordinary part of everyday life.
- If you need to modify your combination, there are other drugs that may be better for you.
- Ask your doctor, nurse or HIV pharmacist about the most common side effects of the drugs that you might use.
- Ask how likely they are to occur.
- Even rough estimates will give you a good idea of what to expect.
- Ask how many people stop treatment because of side effects – usually it is very few.
Your CD4 and viral load are the main blood tests used to monitor HIV.
The CD4 count tells you about your immune system. Results are given as cells per cubic millimetre (cells/mm3).
The range for HIV negative adults is from about 400 to 1600. Getting above 500 is considered normal.
Even with a very low CD4 count, ART can boost your immune system much higher.
The CD4 percentage (CD4%) is also good to know in case your CD4 count has unexpected changes.
Viral load (VL)
The VL test shows how much virus is in a small sample of blood. Results are given as copies of the virus per millilitre (copies/mL).
VL tests show how well ART is working. The aim is to reduce this to less than 50 copies/mL. This is called undetectable.
If VL doesn’t become undetectable within 3-6 months, or it increases later, you might need to change treatment.
This is because the drugs might not be working or you may not be taking them correctly.
Your CD4 count is closely related to your risk of becoming ill. Your CD4 count and how it changes over time is used to decide when to start treatment.
Above 350, you still have a very good immune system but still are at higher risk of TB. As it drops below 350, the risk of skin or digestion problems increase.
Below 200 there is an added risk of a pneumonia called PCP.
Below 100 you become vulnerable to other very serious illnesses.
Below 50 the risks are higher still, including from a virus called CMV that can cause permanent sight loss. A CD4 count this low requires special eye checks.
HIV meds are much easier to take than drugs used to treat these HIV-related problems.
Although you may be worried about treatment, HIV is still a very real and life-threatening illness.
HIV drugs stop the virus from making copies of itself.
This reduces viral load to very low levels. Your CD4 count then has a chance to grow stronger again.
When not on treatment, your immune system works in overdrive. HIV infects CD4 cells and makes more virus.
Your body produces new CD4 cells to fight the virus. Then HIV uses these new cells to produce more virus. It is like a dog chasing it’s own tail.
Over time, and without ART, your immune system gets worn out.
When not on treatment, your immune system works in overdrive
As long as you do not develop drug resistance, the same drugs can work for years or even decades.
This involves getting viral load to undetectable (less than 50 copies/mL).
This is also why it is important to take your drugs on time, to follow advice on taking with or without food, and to not miss doses.
Around 19 out of every 20 people (95%) in the UK whose viral load stays undetectable for the first year, will continue to be undetectable for each following year.
Yes, this is easy.
Although most people do well on their first choice, if it is difficult you can change one or all or the drugs.
This will not harm your long-term health. It will not reduce your treatment options. You can still use the same drugs in the future.
You have many choices, especially if your viral load is already undetectable.
You do not have to put up with difficult side effects.
For most people it is often better to see whether it gets easier after the first weeks or month.
A few people may change quickly, even after only a few days.
Everything in HIV care is individual.
If you have problems with ART, do not stop taking your drugs without first speaking with your doctor.
Contact your HIV clinic to book an early appointment.
Unless there is a medical need to stop, taking a break in ART is not usually recommended.
Staying on ART will generally be better for your long term health. It will keep your CD4 count high and keep HIV under control.
- Stopping ART is not generally a good idea.
- Your viral load is likely to increase within days. Each time you stop there is a risk of drug resistance.
- Your CD4 count is likely to drop. It will be more difficult to recover when you restart ART.
- If you really want to take a break, then first talk to your doctor.
- If this is because side effects are difficult or you don’t like the food advice, there are other drugs that might be better.
If you still want to stop, your HIV doctor can tell you how to do this as safely as possible.
The latest WHO guidelines now recommend that everyone should start ART regardless of CD4 count when they are diagnosed. This is to reduce the longer term issues the virus may cause and to reduce the forward transmission of HIV.
This means that some people should now be thinking about ART earlier than they expected, because the advice from their doctor has changed.
In general though, your doctor is right to be talking about starting ART and this is good information.
The range of responses to HIV has always been very wide. Some people become ill within 1 to 2 years of infection. Others can have a strong immune response that lasts for many years.
If your CD4 count stayed above 500 for more than ten years without ART you a long-term slow progressor (LTSP). If viral load is also undetectable, this is called an elite controller (EC).
The benefits of ART are now thought likely to be important for people with LTSP and EC responses.
This is because HIV may have been affecting other parts of your body than just your CD4 count.
Nearly everyone can get an undetectable viral load on ART.
If you do not get a full response it can be for one (or more) of the reasons below.
Adherence. This means checking you are taking the right dose at the right time each day. It might mean you are not following food recommendations.
Choice of drugs. Is the combination strong enough. Some combinations are not recommended with a viral load over 100,000 copies/mL. Also, the higher you start, the longer it may take to come down.
Resistance. Your HIV may have been resistant to one or more of the drugs you used. UK guidelines recommend a resistance test before starting treatment to check for this.
Drug interactions. Some medicines, including supplements and vitamins, can affect how you ARVs work. Speak to your doctor and pharmacist about all medicines and supplements you take.
Side effects. You have to be able to tolerate your meds and they have to be easy for you to take.
Knowing a little about each issue is good before starting ART.
With all these factors covered, if you have a good doctor and you take your drugs carefully, everyone starting ART should be able to get an undetectable viral load.
Some HIV drugs interact with chems, recreational and street drugs, methadone, vitamins and supplements and over-the-counter medicines.
Interactions can be complex. They can increase or decrease levels of the HIV drugs or the other drugs.
It is therefore important that your HIV doctor and pharmacist know about other drugs or supplements that you take, even if you use them rarely and even if they are not legal.
Your doctor will treat this information in confidence.
Although alcohol does not interact with HIV drugs, the side effects of alcohol might lead to missing doses. This is because alcohol can change your mood, priorities and sense of time. It is easy to forget your HIV meds including if you oversleep the next day.
For these reasons, people who drink more alcohol have a higher risk of ART failure. This is another thing that it is good to talk about with your doctor.
The current drugs are a treatment, but they are not a cure.
Even people who have an undetectable viral load for years, still have small amounts of HIV in their body. This HIV is mainly in CD4 cells that are resting.
Most of your immune cells are meant to be resting. These cells are not in your blood but in lymph nodes.
The resting cells are like books on the shelves in a reference library. When they become active in response to an infection, it is like someone taking the book they need off the shelves.
The HIV in resting cells is why curing HIV is so difficult. These cells might sleep for 50 years – or wake up at any time. This is why you need to continue taking ART.
Research into the search for a cure for HIV is making exciting progress, though this is likely to still take many years.
Even if a cure takes a long time, if you take your drugs and look after your health, you are likely to live into old age.
What is adherence?
Adherence is a word used to describe taking your drugs exactly as prescribed. This includes:
Taking them at the right time.
Following advice to take with or without food.
Avoiding any drug interactions.
Adherence is the most important thing you have to think about when you start treatment.
It will make sure that all the drugs in your combination are at high enough levels to control HIV for 24 hours a day. If these levels drop too low it increases the risk of resistance.
Adherence can be difficult. You may need some support to get used to the changes treatment makes in your life. A routine or daily schedule can really help.
Pick a time to start treatment when you have a few unstressed days to adjust to the changes.
During the first few weeks, getting your treatment right should be your only priority.
Some clinics and/or support organisations have someone who can help. This can include HIV positive people working as a peer mentor.
How much is enough?
Aiming to take every dose – or almost 100% – is still the best goal to aim for.. Even missing one or two doses a week can cause some drugs to fail, especially when starting treatment.
However, a window period of about an hour either side of your usual time is okay for most drugs and most people.
Once your viral load becomes undetectable you may have a bit more flexibility, but it is still important to take adherence seriously.
“Part of the reason I started combination therapy was hearing the experiences of other people living with HIV and seeing how well they looked. I have been on HIV treatment ever since, without a break. The biggest challenge for me to being adherent is the travel involved in the work and for holidays. Once or twice I have mistakenly taken my efavirenz during the day instead of at night. I have barely been able to function because of the side effects. I now facilitate treatment workshops with African people in the UK. People want to know more about their treatments and want to learn. One person came up to me and said that they always tried to adhere to HIV treatment but didn’t know why they had to. Learning the reasons why they need to be adherent was an eye opener for them and they were then able to confidently tell others the same things.” — Winnie, London