Tag Archives: Meds

One less pill to take


Shortly after my HIV diagnosis my immune system took a bit of a tumble. I had a difficult time with side-effects of the first combination of antiretroviral drugs I was on, I also had a lymph node infection followed by an allergic reaction to the medication used to treat it. All of this left me feeling a bit weak, and my CD4 cell count dropped to 170.

A CD4 count below 200 is often associated with an added risk of developing certain opportunistic infections – two of which are pneumocystis pneumonia (PCP) a lung infection, and toxoplasmosis, an infection which affects the brain. Both are very serious, and can be fatal.

Thankfully, these infections can be prevented by taking a daily antibiotic. I was prescribed Septrin (cotrimoxazole). Septrin is the best available protection against PCP, and also provides some protection against toxoplasmosis.

While it was wonderful having that added protection against those infections, I was always hesitant about taking Septrin each day. It seemed to enhance the side-effects of my antiretrovirals, which were otherwise unnoticeable. It made my skin itchy. It made me very prone to sunburn – I’d find myself getting burnt when I’d hardly been out for long.

Most significantly, Septrin has been known to lower white blood cell counts – meaning it could be slowing the process of my immune system rebuilding.

On Monday I got the wonderful news from my clinic that I’ll not need to take Septrin anymore. My CD4 count hasn’t really improved,  but research has now shown that the risk of those opportunistic infections is far lower in patients who have sustained an undetectable viral load (less than 50 copies of HIV per millilitre of blood). My HIV viral load has been undetectable for more than six months now, meaning that those opportunistic infections pose much less of a threat now than they did when I was first prescribed Septrin.

I’m hoping now that my immune system can get on with repairing itself, and my CD4 count will begin to rise more steadily. Without Septrin I’m on just 3 pills a day, my antiretrovirals, none of which have any noticeable side-effects.

Bloods again

17th March 2014

That time has come again, a return to the clinic for blood tests. My last blood results showed a slight increase in my CD4, and a viral load drop to undetectable levels.

As the months have passed since my diagnosis, my strong dislike of needles has faded (that’s putting it mildly, I once persuaded my dentist to drill and fill a tooth without anaesthetic because I hated the thought of an injection so much). This time I was actually curious, though I couldn’t bring myself to watch the needle going in, I did watch as the five vials of blood were taken.

I’ll need to get used to these blood tests, as I’ll likely be having them for the rest of my life unless a cure is found. As time goes on the frequency of the tests will decrease if results are good. The reason for the tests is to make sure the meds are working, if they are working then my HIV viral load should be ‘undetectable’ (less than 50 copies per ml), and my CD4 cell count should over time rise back to an effective level of 600+.

The other purpose of the tests is to make sure the meds themselves aren’t causing too much damage. The daily combination of antiretroviral drugs which so effectively fight HIV, can also put a strain on the body, so some of the blood taken will be used to test things like kidney function.

7th April 2014

I returned to the clinic this afternoon to get my results and discuss any concerns with the doctor. I’d actually been a little worried, as I’d not been feeling well lately and have had some discomfort in my stomach after eating meals. Since food is an important part of the absorption process for my meds, I had some concern that perhaps I might not be getting an effective dose.

Thankfully that worry was unfounded, my meds are still working, and the HIV virus in my bloodstream is being suppressed, so like my previous results three months earlier, viral load was ‘undetectable’.

This time there was no rise in my CD4 count – actually it dropped slightly. The CD4 count drop was disappointing news, but factoring in the margin for error in CD4 count tests, my CD4 count has remained fairly steady since diagnosis – so it’s not improving, but not getting significantly worse either.

Perhaps it may take some years for my immune system to rebuild, I feel extremely lucky to have those years ahead of me, even if it may be a bumpy road back to full health.

Travelling with HIV and meds

Prior to my HIV diagnosis, my boyfriend and I had spent quite a bit of time abroad in recent years, in fact we’d talked about relocating to Germany on a more permanent basis. I had worried that being HIV positive might be an added complication to our travel plans.

I was aware that travel restrictions existed for people with HIV, though I didn’t really understand where was off limits, where was welcoming, and what terms and conditioned applied – would travel insurance suddenly become far more expensive? We decided a holiday was in order, the best way to find out of HIV would become an issue in our travel plans was to plan a holiday and just do it.

Finding out the countries where people living with HIV are (and aren’t) welcome was fairly easy. UNAIDS has a handy infographic…


A vast majority of the countries that we’d be likely to want to visit are currently okay. Though I may like to visit Australia someday, their restrictions aren’t so bad that it’d prevent a short holiday. Russia is another country both my boyfriend and myself would love to visit, however due to the regime’s attitude towards homosexuality it seems unlikely we’d feel welcome there, regardless of HIV status.

We decided on a short trip across Europe by train. Eurostar from London, through France and into Belgium, with a stay in Brussels, then the high-speed ICE from Brussels to Cologne in Germany, a couple of days there, then a sleeper train through the night from Cologne to Berlin, and after a couple of days in Berlin a flight back to London.

I did a bit of research on travelling with HIV. The Terrance Higgins Trust website has a whole section packed with information. Taking my medication through border control was my biggest concern, I had no prescription to prove what they were for, and they are not labelled with my name. Thankfully my clinic was able to provide me with a letter explaining that the medication I was travelling with is required for a ‘chronic medical condition’. HIV isn’t mentioned, though if asked what the meds were for I’d have no issue disclosing.


Next up, travel insurance. I expected this to be excessive, and actually the first quote we got was over £70. However, after shopping around we found a company willing to cover me for about £20, so as is usually the case with insurance, it’s worth shopping around and using comparison sites. There were a few questions about my condition, they needed to know my most recent CD4 count, and how long I’d been on my current meds.

As it turned out, no one at border control in any of the countries questioned why I was travelling with meds. The letter from my clinic gave me peace of mind though – I don’t know how I’d react if for some reason my meds were taken away from me.

I won’t bore you with holiday photos, but I was pleased to have found this street art close to our hotel in Brussels…


It feels good to know that HIV won’t prevent me from seeing the world with my boyfriend. As for the longer term plan of relocating to Germany, it doesn’t seem like HIV would be an issue with that either.

Thanks for reading :-)

Side note: A few weeks ago a group of Conservative MPs tried to introduce a bill which would apply entry restrictions here in the UK. Their aim was to make it possible to refuse entry to people with HIV, Hepatitis B, or ‘other pathogens’. The bill was not entered into law, but it’s a reminder that despite travel restrictions being lifted in some parts of the world (such as the USA in 2010), there are people fighting to introduce new restrictions even here.

A life on medication

One of the slightly uncomfortable aspects of coming to terms with my HIV diagnosis was the realisation that I would be dependent on medication for the rest of my life. Don’t get me wrong, I’m glad that this medication exists and tremendously grateful to live in a country where healthcare is free, but it was difficult admitting the fact that the only thing preventing the continued weakness of my immune system was a few colourful pills each day.

I’ve been on medication before, in my early/mid teens I was prescribed anti-depressants, and was on those for about four years, but that never really bothered me. This time was different, partly because I knew it wouldn’t be a temporary thing – I’d require these antiretroviral drugs for the rest of my life, but mostly because it meant accepting that my body in its current state was broken, unable to sustain itself, not able to keep me alive ‘naturally’.

I don’t know if I’m alone in this concern or if it’s common, and I guess it’s not an issue uniquely associated with HIV, I wonder if diabetics for example who require daily insulin injections might feel the same?


After a few months of taking my antiretrovirals (often abbreviated to ARVs), I am beginning to feel more comfortable about my newest dependence. I’ve rationalised the situation as best I can, by acknowledging that I, and indeed all of us, are already reliant on so many things to keep us alive – food and water, heat, oxygen. What’s one more thing to add to the list?

I’m hopeful that in the future new treatments may make it possible to swap my daily meds for 3 or 6-monthly injections, that’d at least take away the daily reminder. But taking my meds each day isn’t something I do reluctantly, I’m not sure I’ll ever be able to put into words how grateful I am to live with HIV, rather than fall victim to it.

Thanks for reading :-)

Coming Out, Again.

It was around a decade ago that I ‘came out’ as gay. A few people knew before then, either from me telling them, or them guessing. For a long while it didn’t seem like such a big deal hiding the fact that I was gay, why should it matter? If I want to keep it to myself then what’s the big deal? But it’s surprising how many little lies it takes to keep something like that private, and that wasn’t really something I felt comfortable with. Eventually, I needed to come out, not just to a few people whom I’d then burden with having to keep it quiet; I needed to be open with everyone.

Looking back, I think everyone in my life now would agree I made the right choice. Now, all these years later I find myself in what feels like a similar situation again.

I found out recently that I was HIV positive, and I’ve kept fairly quiet about it until now. Why the silence? For the many familiar reasons… Why should it matter to people? If I want to keep it to myself, what’s the big deal? Plus, if I’m honest, I’ve been terrified about the reactions I may get.

Perhaps some will read this and wonder why the hell I would even consider being open about it? Many of the 35 million people living with HIV today have chosen to keep quiet. Some tell a few others in their life, some tell no one at all, very few set up a website and broadcast their HIV status to the world (though I’m not alone in doing this, and I have much admiration for those who’ve done this before me).

There is of course a big difference between coming out as gay, and coming out as HIV positive. Everybody understands what it means to be gay, and I’d guess most people reading this must have at least one gay friend, family member, or colleague. Being gay isn’t an issue in 21st century Britain, there’s no stigma attached to homosexuality anymore, and nobody in his or her right mind would suggest it’s something to be ashamed of.

HIV however, is far less understood. How many openly HIV positive people are there in your life? How many openly HIV positive musicians can you name? Or actors? athletes? MPs? business leaders? There are people with HIV in every walk of life, but it simply isn’t talked about, because the people who could talk about it, who understand it, who live with it, often choose not to talk.

A mural in Ghana challenging HIV related stigma

HIV is just a medical condition, yet some attitudes towards HIV can be a world apart from attitudes towards other conditions. There’s no stigma attached to being diabetic, asthmatic, or epileptic. No one would suggest someone with high blood pressure or cholesterol should keep quiet about it.

There’s a vicious cycle of stigma, caused by ignorance, caused by silence, caused by stigma. It does nobody any good. Attitudes will only change if people with HIV stop hiding in silence.

The reality of living with HIV has changed so much since the last big public awareness campaign in the late 1980’s, “Don’t die of ignorance” was the tagline of that campaign, it’s unfortunate that despite the efforts of some great charities and organizations, so many people are still unsure about what the virus is, how it can be transmitted (and equally importantly, cannot be transmitted), and what the difference between HIV and AIDS is.

For those really not aware of the facts around HIV or how things have changed since the discovery of the virus a little over 30 years ago, I’d like to point out that I’m neither dying nor ill – and I’ll explain why that is in a moment.

HIV is a virus, most commonly transmitted through unprotected sex or infected blood, it’s not possible to catch HIV through normal day to day contact or such things as hugging or kissing, sharing cutlery or drinking from the same glass. If someone with HIV coughs or sneezes near to you, you’re not at risk – it’s not like a cold or flu virus.

What the virus does, in simplified terms, is weaken the immune system. It invades blood cells used by the immune system to find infections, and uses those cells to replicate copies of itself. Left untreated, the immune system would become gradually weaker until it was unable to effectively prevent infections. The term AIDS refers to the condition where an immune system so damaged by HIV that a person is at risk of becoming seriously ill or dying.

As I said above, I’m not dying. There have been incredible breakthroughs in treatment during the short time since the discovery of HIV/AIDS. Each and every day at 6pm I take three tablets, those tablets work together to fight the virus in various stages of its lifecycle. Last week I got the results back from a blood test, after three months of treatment, there were no detectable copies of the HIV virus. This doesn’t mean I’m cured – new copies of the virus continue to be produced deeper in my body, so I’ll be on a combination of these drugs for the rest of my life, or until a cure is found.

Three pills, one a day.

Crucially, while the virus is not running wild in my bloodstream, it’s not able to damage my immune system, which has already begun to show signs of recovering.

When my doctor first informed me that I was HIV positive I asked a number of questions, quite naively one of them was about life expectancy. His answer I think really sums up the reality of life with HIV today, “You shouldn’t worry about AIDS, you’re far more likely to die of something else”. What he was getting at is that HIV is now a  manageable condition, and most people who are HIV positive and on effective medication will grow old and die in just the same way as anybody else.

So, to bring this long post to a close. I’m Chris, I’m HIV positive, but still the same person I’ve always been, I’m happy, I’m healthy, and I hope that through this blog I can help in at least some small way to challenge attitudes about HIV.

I’m sure everyone reading this will have some kind of opinion or unanswered questions, so please comment below.

Thanks for reading! :-)