Guides

Quotes – Introduction to ART

All quotes were used in as part of the i-Base Introduction to ART.

i-Base would like to thank everyone for permission to include these.

It is an exciting time for people living with HIV.

HIV treatment is now recommended for everyone, even at a high CD4 count. This is irrespective of age, gender, other health risks and where in the world you live.

The PARTNER study also showed how dramatically ART prevents HIV transmission.

And HIV negative people have the choice to use PrEP to protect against HIV so that safer sex becomes a more shared experience. This also reduces anxiety and fear about HIV.

ART will become the routine next step after finding out you are HIV positive. This is easier when using better drugs.

Starting ART can be one of the most empowering ways to deal with the shock of being diagnosed.

By taking control over this aspect of HIV, you can carry on with your life.”

— Simon, London.

I was diagnosed in Feb 2014 after one low-risk experience. I knew immediately that I wanted to start treatment and I wanted to be less infectious to any future partners, even if we are using condoms.

I also learned from my support group that because I was diagnosed soon after I was infected, there may be additional benefits from early treatment.

When my first doctor didn’t offer me treatment, I asked for a second opinion and I changed my doctor. This led to me starting treatment when I was still within six months of infection, which may be important.

Since then, my experience of HIV – both at the clinic and from support organisations – has been really positive. And it was great when my viral load became undetectable.

I knew I was really unlucky in catching HIV but learning and understanding how the treatment works and then deciding to use it has been an important part of how I chose to move forward.

— Lenny, London.

I got a shock diagnosis in January 2002 and immediately worried about dying. I pictured myself as a person in the media adverts for African people with AIDS who were just bones and skin.

My viral load was 650,000 and my CD4 was less than 10. Therefore I had to start ART immediately.

I read the leaflets and could not believe I was on treatment for HIV.

Because my CD4 count was so low, the increase in CD4 cells caused TB to become active.

So I started on TB treatment. I asked the pharmacist to have the TB meds as an oral solution as I couldn’t swallow the large tablets.

Now, 15 years on, I take my HIV medication every day and at the right time.

— Memory, London.

We are both HIV positive and not using condoms is a special part of our relationship.

We are both on treatment and have no resistance. We don’t usually have other partners, but agree to use condoms if this happens, so that we would reduce the risk of STIs…

— Steve, Manchester.

I am positive and so is my partner.

I am happier to continue using condoms.

This is because I feel better to be in control of this part of my life.

At least I don’t have to worry about my health if he decides to have other partners…

— Paula, London.

I started treatment on a once-daily pill containing tenofovir, emtricitabine and efavirenz. I had nightmares the first night, but these went away. What I couldn’t get used to though was feeling dizzy a few hours after taking my pill.

Even though I took the pill at night, I could not sleep properly.  Perhaps because of poor sleep I felt agitated during the day. Sometimes I need to work late into the night, but the dizziness after taking my pill would prevent me from doing so.

I continued for a few weeks, but was unhappy with the effect the pill was having on my life. So I switched the efavirenz to raltegravir.

My life quickly came back to normal. I am sleeping properly. No sweats, no tossing and turning, no insomnia, no weird dreams, no dizziness, no falling over when I go to the bathroom!

I am much happier, even though this means I take a twice daily treatment.

— Nathan, Cape Town.

My first reaction was to put off starting therapy for as long as possible. I tried to improve my immune system by stopping smoking and using supplements, until I realised that my best bet was to use ARVs. They are the only way to ensure my long-term survival.

After 8 months of resisting treatment I eventually started ARVs. I do not say that I gave in but that I became more clever!”

— Vladimir, St Petersburg.

No-one wants to take drugs every day and I certainly didn’t, so I put it off.

Looking back, I wish I had started sooner.

I still wonder whether the three years I spent waiting for my CD4 count to fall would have been happier and more active ones if I had started treatment at a higher CD4 count, when my doctor recommended this.

— Matt, Brighton.

was diagnosed with HIV in 1997 and had to start on treatment when I was still in shock. I discussed the pros and cons of each drug with the nurse but most of it went in one ear and out of the other.

I needed time to find out about the different drugs and side effects, but with a low CD4 count I needed to start treatment soon. The information I  got from the clinic was detailed and complex.

I was lucky. I had a good network of positive friends and got sound advice in terms I could understand.

Over the past 18 years, I have seen treatments become easier to take with far less side effects.

HIV treatment is not rocket science. You can easily learn about it. I am sure I get better treatment for my HIV because I understand what is going on. This gives me the confidence that I should live a long and happy life, just with a manageable illness.

I talk with my doctor and I take an active role in my choice of treatment. I always say if I have problems with side effects or adherence.

— Paul, London.

I was confused about how my clinic worked, even when I was on treatment. One day I asked the nurse to explain the tests and what a ‘good’ or ‘bad’ result might mean.

It was tremendously helpful. I used to be happy with doctors saying ‘everything’s okay’ but now I want to know details about a few key things – my cholesterol, my bone health, my liver and kidneys.

— Matt, Brighton.

I was very scared of treatment. I did not think it worked cause I had just arrived from Zimbabwe.

I came to the UK after my husband died and I needed treatment immediately. I told my doctor that I did not want to be on d4T and ddI and he laughed because these drugs were no longer used in the UK. It is amazing what the disparity of wealth does to countries.

I never used to read about the meds I was given but after my experience with efavirenz (which I changed) I now read every detail on every drug.

Now I tell everyone that the drugs are fantastic because they have given me a new lease of life.

— Hosanna, UK.

Get involved in choosing your treatment. It needs to fit to your life, schedules and routines as much as possible.

Being able to share with my relatives and close friends has helped me a lot. My boyfriend always asks me if I took the pills on time.

I’ve been taking HIV treatment for the last 20 years. When I started, no one would have imagined the choice we have now. I now feel truly optimistic about the future.

As new drugs become available, choices will become even more individualised. A good relationship with our doctors and nurses is important: we’ll probably need to see them for years!

— Xavi, Barcelona.

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 am very happy on Atripla and don’t get side effects. I now run treatment workshops with African people in the UK. People want to know more about their treatments and want to learn.

— Winnie, London.

Last updated: 1 May 2018.