Starting the treatment: share your story

This community is just getting started, so please take the time to share your first experiences regarding treatment. This can help you learn a bit about each other and help others that haven't started treatment yet.

Here are some points to consider:

How old were you?

How long you have been HIV positive by then?

How did you feel about it?

What was your CD4 count?

What changed in your life?

What did you learn?

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2 Replies

  • I started treatment very soon after being diagnosed because my viral load was very high. At this time HIV was still a terminal illness but that was about to change...

    That was back in 1997 and I am still here, alive and very much kicking. I do not want to dwell on the treatments I took all those years ago because I do not think it is relevant or useful.

    Treatments for HIV have changed beyond all recognition. I now take one pill twice a day and two more once a day, many people only take one pill once a day. I do not have any side effects from my HIV medication at all. I have to mention that at 54 I take twice as many pills for things that have nothing to do with HIV, I like to call them my "Grumpy old man" pills.

    HIV is now, if you start treatment in time, a chronic or long term condition. There is no cure and if you stop taking your medication you will get ill and die. Having said that once you have got the level of the HIV virus down below detectable levels for six months you are no longer infectious.

    There have been a lot of studies recently that show that you can not pass HIV on to others if you keep your viral load at undetectable levels for over six months. This is great news and has led to a lot of people choosing to start treatment sooner than they need to, medically in the UK, you should start treatment when your CD4 count drops to 350 or below.

    Remember, you are the most important person in this decision. We are talking about a life long choice, once you start treatment you can not stop. You can change your treatment if you are having problems but you will be on medication for the rest of your life. Take your time and advice do not feel pressured by other people.

    i-Base ( are a great source of information about treatment. They have a really good guide to stating treatment ( as well as other guides including changing treatment ( and pregnancy, oh yes you can still have kids if you want to (

    Remember, there is a lot of help and support for you out there don't be afraid to ask...

  • In 1983 I was 21 and on a trial to see if a virus called HTLV3 was the cause of this new disease they had called AIDS. I tested positive and my doctor was in more shock than I was.

    Unlike Pauldecle I think it is important to know the origins of HIV medication so that people who think they can't comply with their treatment realise how easy things are.

    The early drug trials were harsh and went on 24/7 I got to bed at 2am and my alarm went off at 5 am to eat a cube of cheese, 6am to take 26 pills. Then try desperately not to vomit or they had to be taken again. At 9 am dissolve 5 dishwasher tablets (early DDI) in cold water stirring for about 30 mins and drink it down and keep it down. The day continued like this until there were a few hours when you could vomit until your heart was content. Then it was back to the rigid timetable of food, fasting, pill swallowing, vomiting and of course pooping. My bum was like a dragons nostril for years. On top of this there were hospices to visit and funerals to attend as a reminder of what was around the corner so mental health was an issue but nobody had any experience of how to provide support for a group had never expected to be dealing with the basics of life and death so we worked it out for ourselves and THT coordinated it.

    Now all you have to do is take maybe 3 pills at most that do absolutely nothing to you and because of the monitoring and medical care you will receive, the chances are that you could live longer with HIV than without it.

    The problems I face now are due to the toxicity of those early drugs rather than HIV but unfortunately there are not enough survivors to provide data to benefit office staff and even some doctors who can't see why having HIV has any effect on my ability to walk or why I would be in pain as a result of taking medication, so if I feel isolated it is because of a lack of understanding of what failed drug trials can do rather than anything HIV has done. THT no longer provide support of any relevance and don't like unwell looking people in their building, they are not used to seeing it. This is a good thing and ultimately THT will not be needed at all

    So I wouldn't fancy catching that again but If I were diagnosed with HIV now I would be less concerned than I would be if I had a positive Hep C result or diabetes or emphasemia or many of the conditions I may have had now if HIV hadn't made me look after myself. I've already outlived my father by 20 years who died of an overdose of bacon and eggs, but I have a dietician and know my cholesterol levels. Who else has that luxury?

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