Category Archives: Treatment / Medication
There’s no doubt that HIV is an under-discussed issue and attracts a fair amount of stigma – but the situation regarding stigma and education about Hep C is even worse. Now imagine living with both.
I met ‘Adam’ via Twitter, he’s a gay guy in his thirties who has recently been diagnosed with both HIV and Hepatitis C. I asked him if he’d let me interview him for UKPositiveLad.com and he very kindly agreed, on the basis that it was done anonymously – which is entirely understandable.
ME: Thanks for talking with me Adam, let’s start at the beginning. You’re HIV+, when did you find that out?
ADAM: I was diagnosed in January. I went to 56 Dean Street, they have something called the Code Clinic on Tuesday nights that is for gay men who have risky sex or use recreational drugs — it’s meant to be very non-judgmental, and really is. I was diagnosed with HIV, and with Hep C co-infection
ME: You got both diagnoses at the same time? That must have been difficult?
ADAM: I got the HIV diagnosis that same night, but I had to wait until the next week to get the results from the blood test. I was expecting the HIV to be confirmed, to find out about viral load, CD4, etc but I was not expecting to hear about Hep C. It felt like winning a really shit lottery… all my numbers came up… and then there’s the thunderball!
ME: So what happened next? Were there more tests or did you go straight onto treatment?
ADAM: My CD4 count was just over 200, which is really low. I started on ATRIPLA for the HIV just a month after my diagnosis. They also put me on antibiotics, which were really scary – I’m allergic to the one they usually give out, so they had to give me one that is normally used for people with leprosy. It was really strong and gave me upset stomachs, so that freaked me out even more.
ME: So that was January, we’re now in June – how are the two strands of treatment going? Let’s start with the HIV.
ADAM: Well, the HIV treatment is much better now. I was on ATRIPLA for the first two and a half months but I did not like it. I had very vivid dreams every night… mine tended to be like really heightened sitcoms, but sometimes they were thrillers. But the reason they took me off ATRIPLA, is because my liver function was very elevated.At one point, it was more than 1000% of what it should normally be, in a non-Hep C infected person. So now I’m on Truvada and Raltegravir - three tablets a day total, but not tied to sleep – it’s wonderful! I have an undetectable VL and my CD4 was 370 last week.
ME: What about the Hep C?
ADAM: Before I got to meet with the consultant, I had to do a series of tests…
The first step was going for an ultrasound. (Yes, just like pregnant ladies). It was me, and a corridor full of all these sweet hetero couples, they were all loved up, and waiting for their first scan. I felt totally awkward, as I didn’t bring a lady with me and obviously I wasn’t there cos I was with child. The ultrasound was normal, but I found out I have two gall stones (again with the random unexpected health news!).
After the ultrasound, they sent me on for another test, called a Fibroscan. It’s kind of like sonar, they hold the device up against your tummy and it ‘pings’ your liver. Based on how quickly the pings come back, they can get a reading of how fibrous your liver is. If your liver is damaged (ie, scarred), then it is more fibrous, and it takes the pings longer to come back. Unfortunately, the Fibroscan results were inconclusive. There are 4 levels of Fibroscan ratings: 1 is that your liver is fine, 4 is that it’s damaged – I was in the 2-3 ‘indeterminate’ range. However, they think this could just be because the ATRIPLA was causing such heightened liver function, that my liver was swollen.
ME: So what’s the next step?
ADAM: So the consultant says that I have two basic choices. I can start treatment straightaway or wait 3 to 5 years, and see if any new treatment options become available.
I’m going to wait to start treatment in about 4-6 months. I have a few big projects I have just started that will finish by then — I do a lot of creative work, and have finally just adjusted to being HIV+ and into a good routine with those meds… so I kind of want to get through a few big things, before dealing with the side effects.
ME: What is the treatment as it stands? What are the side effects?
ADAM: Right, the treatment lasts for 48 weeks. For the 12 weeks there’s one pill once a day, there’s one pill you take every day for the entire 48 weeks, plus a weekly injection for the the each week for 48 weeks. All on top of my three pill a day HIV treatment.
The side effects of Hep C treatment are very strong, they can include anemia, a rash, depression and mood swings. However, they will normally treat the side effects, rather than withdrawing the Hep C treatment, if this is possible - which tells you how seriously they take the need to treat the Hep C.
ME: How’ve you felt about sex since both of your diagnoses in January?
ADAM: Sex is complicated. For the first few weeks, I was not interested in it at all, I was really worried that I had just gone off it entirely, but I’d got myself in such a mess, it wasn’t really even a concern.
I usually barebacked before, but now that is especially fraught. I used to think “oh, if I do end up HIV+, then it’s OK to bareback with other poz guys” - but that is really not the case when you have Hep C.
Given how many profiles on websites like BBRT now mention the “my last Hep C test” I’m sure I am not the only one who’s been dealing with it, and of course, whoever I got it from either didn’t know their status, or they did and carried on regardless.
ME: Have you told many people your Hep status? If so how has it gone down?
ADAM: To be honest, no I haven’t. It was really down to you and a few other openly HIV+ tweeters that I got up the courage to get tested, and face it all. I have told one or two good mates, who I used to have sex with and they have been supportive.
ME: There seems to be a lot of stigma attached to Hep C, especially among HIV+ gay guys. Have you felt that?
ADAM: I think part of it is down to ignorance of what is actually involved in treating Hep C, and in part down to a double standard where guys who are HIV+ and bareback (and, in many cases, use drugs recreationally as part of the fun) will then get all worried about getting Hep C, but not enough to curtail any of the activities that would put them at risk.
You see it all the time on hook-up websites – guys have pictures of themselves getting barebacked and fisted, they put they are positive and use drugs, but put in a note about their last Hep C test date which is often six months ago or longer. You have to wonder how much risky sex they’ve had since then.
ME: Finally, how much did you know about Hep C before you were diagnosed – compared to now? Was it on your radar?
ADAM: I knew Hep C was out there, but to be honest, I didn’t think I would get it. I had been into fisting for a while, but had been very careful about who I’d let up there. I didn’t really know much about the treatment, but I did know that it was generally treatable. I had known of at least 2-3 guys who were HIV+ who got Hep C, had the treatment and cleared it so I guess I wasn’t really worried about Hep C.
So yes, it was on the radar, but I wasn’t especially worried, and I knew that if I ever did get it, it would be treatable. But I had never considered the possibility of HIV and Hep C co-infection, or finding out at the same time. And I didn’t realise quite what all was involved in adjusting to treatment, and to the reality of the diagnosis.
Thank you to Adam for sharing his story with us, if you’d like to know more information about Hepatitis C you can visit the Hepatitis C Trust’s website http://www.hepctrust.org.uk/ and follow them on Twitter at @HepatitisCTrust
It’s 00:50 and once again I can’t sleep.
My insomnia has kept me up for the best part of three days in a row now, my mind is tired, my body is exhausted and yet I still can’t sleep.
I go to the bathroom to top up my water glass and I catch a glimpse of myself in the mirror, I look like death warmed up – my skin pale, bags under my eyes so big you could carry your shopping in them, and I’m breaking out in spots -my body has had enough but my HIV meds won’t let me sleep.
This has been going on for months upon months now, sleeping only three or four nights a week, the rest sat up trying to keep myself busy until it’s time to goto work. Sadly it’s become something of a routine – a routine that’s causing me to burn out.
I wish I could say that insomnia was the biggest of my concerns, but sadly it gets worse, over the last few weeks things have been going bump in the night. I’m hearing and seeing things that aren’t there. It started off as little things, a thud in the hallway, a shadow out the corner of my eye – but progressively they’re getting more and more significant – I’ve heard the front door being hammered only for no-one to be there, giant spiders on the ceiling, I’ve even seen myself sat in my desk chair.
I’m reasonably sure that it’s not a inherent problem with my mind, so much as the medication – the hallucinations only happen after I’ve taken my meds and on nights I can’t sleep. So I think it’s pretty reasonable to conclude that they’re side effects that I’d normally sleep through – but in my perma-awake state I have to endure. What I’m not sure, however, is why they’ve only started now – nearly 18 months after I started this combination therapy.
I’ve asked my doctors to change my HIV meds before based on my sleeping issues but they’ve told me to wait it out, I’m hoping when I see them on the 17th that they’ll take the news of hallucinations and even less sleep slightly more seriously. Either that or they’ll lock me up, and if they do I hope they have wine.
A team of researchers from the University of Illinois and the University of Pittsburgh have made real progress on cracking the HIV virus using super-computing power.
The researchers used the NSCA’s Blue Waters super-computer built by Cray (composed of 6276 AMD CPUs in 276 cabinets capable of 11,610,000,000,000,000 calculations per second (11.61 quadrillion, or 11.6 petaflops)) to break the secret of the HIV ‘capsid’.
The ‘capsid’ is the protein shell of the virus, it is what protects the virus until it enters the human cells and begins the reproduce which is what makes it so virulent. Blue Waters worked day and night to analyse the interactions between every single one of the 64,000,000 (64 million) atoms that make up the HIV capsid – and has helped identify weaknesses in it’s armor which will lead to new treatments in the future.
Pharmacists will be able to use this ground-breaking data to develop drugs that can target these weaknesses and have a bigger impact on the virus whilst having less side effects on the patients taking the drugs.
This is proof, that big metal computing does lead to real results – results that will help improve the life of real people. Here’s a link to the team’s page.
All the best,
As many of you who have been following my writings for some time now will know, I have frequently lambasted the UK Government, Department of Health and Health Protection Agency for failing to take any decisive action to curb the rising rate of HIV infections in the UK.
In recent years there’ve been numerous repetitive campaigns about cancer, stroke, mental health, alcohol, drugs, fruit & veg, exercise – even barbequed food, but nothing about HIV since the late 1980s. Well that changes this month.
24th April 2013 marks the launch of ‘It Starts With Me‘, a campaign created by The Terrence Higgins Trust and funded by HIV Prevention England (HPE), via the Department of Health, a campaign that will run (at least initially) for two years – until April 2015.
‘It Starts With Me’ is a campaign that will be delivered online, via the press, via posters/condom packs in venues and via local outreach teams. HPE will funding national and regional organisations to promote the campaign up and down England.
The campaign focuses on:
- Testing for HIV at least once every twelve months, and more frequently if they have taken a risk, or show symptoms of seroconversion illness.
- Taking the medication they need to stay fit and well, if they have been diagnosed with HIV.
- Protecting themselves during sex by using condoms and finding other ways to avoid risk.
- Participating in community action by finding a way to support the campaign and spread the word to their friends and contacts.
Make sure to check out www.startswithme.org.uk, the website for the campaign, and watch the short introductory video, which includes many interesting facts like 1 in 4 people in the UK with HIV don’t know that they have the virus, and that treatment is easier than ever and dramatically reduces the risk of you passing the virus onto anyone else.
It Starts With Me.
Hello? Is this thing on? Good…
Today I’m talking about Gonorrhea, I’m sure you’ve all heard about it at some point or other, it’s commonly known as “the clap”.
Gonorrhea is one of the most common sexually transmitted sexually transmitted infections (STIs) but that doesn’t mean it isn’t something that should be taken seriously.
First up let’s look at the symptoms, (I hope you’ve not just eaten):
- A white-ish/green-ish discharge from your penis and/or arse
- Anal discomfort
- A burning sensation when you pee
- Inflamed foreskin
- Painful testicles and/or prostate gland
- A white-ish/green-ish thick discharge from your vagina and/or arse
- Anal discomfort
- A burning sensation when you pee
- Painful abdominal region
- Bleeding between periods
But just because you don’t have symptoms doesn’t mean you don’t have it, 10% of men and 50% of women are asymptomatic (show no symptoms at all).
How is Gonorrhea passed on?
- Unprotected anal or vaginal fucking
- Unprotected oral sex (including rimming, and going down on a girl)
- Sharing sex toys (without washing thoroughly or using a fresh condom each time)
- Fingering multiple partners (without washing thoroughly between each)
What happens if I don’t get it treated?
- In girls it can lead to Pelvic Inflammatory Disease
Which can lead to fever, vomiting, abscesses and infertility amongst other things.
- In guys it can lead to a very serious and painful infection of the testicles.
How do I get tested?
- The most common methods of testing are a penile/anal/vaginal swab. A urine sample may also be taken.
What’s the treatment?
- Unlike most bacterial infections which are treated with oral antibiotics in the form of pills, Gonorrhea is treated by an injection of strong antibiotics directly into one of your ass cheeks.
Hopefully you’re all sensible people out there and going for routine STI screenings at your local GUM or Sexual Health Clinic, but if you haven’t been for a while maybe it’s time you popped down and got checked out. After all it’s not just Gonorrhea that’s out there is it? Don’t forget about chlamydia, LGV, syphilis, hepatitis (A, B and C) and of course HIV. If any of your results come back positive don’t forget to inform any recent sexual partners, if you don’t feel comfortable doing this most clinics will offer to do this for you anonymously.
Your health is in your hands, but you can only look after yourself if you know all the facts. If you need to find a clinic near you check out: www.tht.org.uk/sexual-health/Service-finder
Have a great weekend,
Currently 100,000 people are estimated to be living with HIV in the UK, but an estimated 25% of those are undiagnosed.
That’s 25,000 people who have HIV and don’t know about it! As we come to the end of HIV Testing Week in the UK and approach World AIDS Day 2012 I put some of your questions about getting tested and HIV to Dr Sebastian Winckler from DrEd.
1. Why is it so important to get tested for HIV?
Early testing is vital both for you, and for the people you’re sleeping with.
If you’ve got HIV and you’re getting treatment you can expect to live 40 years longer than someone who isn’t receiving treatment.
If you’re taking antiretroviral medication, you become less infectious to other people. Being aware of your status means you can start putting certain measure in place (such as safe sex)
to prevent transmission, as well as looking after your own health.
2. What stops some people from getting tested?
There are a lots of reasons why people avoid HIV tests, but usually it’s down to:
- The stigma surrounding HIV and AIDs: Despite advancements in treatment, in some communities there is still stigma about being HIV+, so many people feel embarrassed about getting tested. Remember, there is no shame in being HIV+.
- The inconvenience of testing: If you work during the day, it can be hard work finding the time to go.
- Fear: Some people are simply scared off getting a result they don’t want to hear. Remember though, it’s better to get tested and treated rather than making yourself, or others, ill.
3. Where can I get tested?
HIV tests are available free and confidentially from:
- Sexual health (GUM) clinics
- HIV testing centres (Terrence Higgins Trust Fastest centres, for example)
- LGBT Centres
- GP’s and family doctors
- HIV tests are available to buy from:
- Private clinics
- Online doctors services
4. I haven’t had any symptoms, so I probably don’t have HIV, right?
Wrong. Most people will experience a short, flu-like illness about 2- 6 weeks after being infected. This is your immune system putting up an initial fight against the virus and can last for up to a month. But, this can be easily mistaken for the flu and 20% of people don’t experience any symptoms at all.
After this has gone away, you are unlikely to notice any other symptoms for a long period of time. So the only way of knowing for sure is getting yourself tested.
5. Can a test pick up any HIV infection, regardless of when I’ve caught it?
No. A certain amount of genetic material needs to build up in your system before it can be accurately detected by a test. The time taken for this to happen is called the ‘window period’ and this is different for every test.
- The standard antibody (Ab) test will pick up HIV if you caught it more than 3 months ago.
- The combined antibody/ antigen test (4th Generation test) will pick up HIV if you caught it more than 6 weeks ago.
- The HIV PCR test will pick up HIV if you caught it more than 7-10 days ago.
In most cases, you will be given either the standard antibody or combined test. If you test negative for these, it doesn’t necessarily mean that you are HIV negative, because you might have been infected within the last 3 months (or 6 weeks). You are therefore advised to take a second test 3 months later for the all clear.
If you want a faster result you can pay for a PCR test. But these are only offered at some clinics and may cost up to £250.
6. I think I’ve caught HIV within the last few days, what do I do?
If you’re worried that you’ve contracted HIV very recently, as in, within the past 72 hours (3 days) then you should go to your local GUM clinic or A&E department and request emergency PEP treatment.
7. I’m afraid to get tested because I don’t like needles
HIV tests don’t have to be done via needle or syringe, some clinics use ‘Fastest’ Rapid Testing which simply takes a prick on the end of your finger. Other clinics may take oral swabs instead, this method is considered less effective than a blood test however, so some clinics won’t offer it.
8. How long do I have to wait for my results?
That depends on the clinic you go to. Most will contact you with your result (or ask you to come back in for it) within 3-5 days. If you take a rapid test your result will be ready within the hour. Some clinics can take up to 2 weeks however, don’t be afraid to ask when you should expect the results.
9. What happens if I test positive?
First off, a positive result doesn’t always mean you’re HIV+. There is a small margin of error, so all positive results must be followed up by a confirmation test.
If you do test positive for that, then the doctor or nurse who informs you of your result will set up a meeting with a specialist who can assess the stage of your infection and talk to you about relevant treatment options. You’ll be put in touch with local HIV support groups who can help you cope emotionally, and make you realise that a positive result is not the end.
Thirty years on and HIV is still a problem in the UK, but it is no longer a death sentence. There is help out there and the earlier you get tested, the better your prospects. Whatever you do, make sure you get tested this HIV Testing Week.
Some charities that can help:
Life+ the must have HIV app
It seems like there’s an mobile app for everything these days, apps to monitor your sleep pattern, make you look old, give you a squeaky voice – but how about an app that’s actually useful?
The Terrence Higgins Trust (THT) have brought out a new iOS (iPhone, iPod, iPad) app aimed squarely at those of us in the UK living with HIV. Now, there are already apps out there that remind you to take your medication, chart your blood results, or give you health advice – but for a price, and certainly not in the same place.
Say hello to Life+ from THT…
- Create medication reminders
- Look up HIV medication information
- Record and chart your blood results
- Jot down notes to discuss with your healthcare team
- Access a wealth of HIV and sexual health information from THT’s vast knowledge banks
- Log onto the MyHIV.org.uk community forums
- Contact THT Direct for phone support
How much does this cost I hear you ask? Not a single penny. All you need is a free account at MyHIV.org.uk – so what’re you waiting for? Head to MyHIV.org.uk and create your account (if you’ve not got one already!) and then head to the Apple App Store and download Life+
(note from THT: there’s a little glitch in the app at the moment that means you need to give it a few seconds to load, this should be ironed out in the next update)