Becky Mitchell

Part 1: START Study

 

My participation in the Strategic Timing of Anti Retroviral Therapy (START) Study

 

I was diagnosed with HIV in August 2012, within 2 or 3 months of infection, and my last results in July were CD4 943, viral load 1,513. My viral load has decreased in the year since diagnosis from 8,628 to 1,513 and my CD4 has fluctuated between 600 and 950.

 

I saw the consultant at the Brecon Unit at the end of July for a check up and he mentioned there was a START study for people with a CD4 above 500, a viral load of under 100,000 and were treatment naive. He explained that it was a randomised selection process and I had a 50% chance of going into the group that starts treatment early or the group that defers treatment until the CD4 count drops to 350. He said it was his duty to mention the study to all patients with a CD4 above 500 and he couldn’t say if there would be any benefits, this was the point of the study. What I liked was that he didn’t pressure me either way. He gave me some information to take away and arranged for the research nurse to phone me in 2 weeks.

 

My Mum was with me at the appointment and she thought it was a no brainer that I volunteer for the study as if I got selected to start medication early, it would “preserve” my immune system and keep the virus under control. Either way, I’d still be closely monitored as part of the study. The alternative was that I carry on as I was and see how things progress. I didn't like the uncertainty of that and felt that if I was able to start treatment early, it would give me some control over the situation and I would know that if my viral load was undetectable, then my immune system would be able to "rest". Everything up until this point had felt out of my control.

 

Louise, the research nurse phoned me about 2 weeks later and explained more about the study.  I said that I would be interested in participating so she said I would need to do a repeat CD4 test within 60 days of my previous one to ensure it was above 500 and there were a variety of other tests, which needed to be done fasted. I made sure I got an early morning appointment because I knew I would be starving if it had been later than 10am.  I do a lot of exercise so eating regularly is critical - that’s my excuse anyway!

 

My CD4 came back as 653 and everything else was fine so it was over to the computer to decide… I got in the group to start treatment early and then a chat with the pharmacist to talk about treatment options. She was really cool, asked me lots of questions about my lifestyle so we could get the best fit. Eviplera seemed the best choice because my viral load was low and it was my first medication – one pill a day – lovely job. This happened so quickly and it took a few days for my mind to process it all as I was convinced I’d end up in the group to defer treatment! Now it was sorting dates for me to go in, get the medication, start taking it and I’m like "arrgggghhh, hang on a minute!"

 

I got the pills, I got a cold, I delayed it a day and then (wo)manned up and took my first pill. I’d been feeling rubbish with a cold for the 6 days since I started so it’s either hid any side effects or it was too early to tell. Some nights, I have very vivid dreams and that was noticeable as I didn't usually remember my dreams.  I'm not complaining because sometimes I wake up thinking "what the f*ck was that about?”

 

I went back to hospital 2 weeks later to have bloods done but I wasn't expecting any change to my viral load until the December appointment, 3 months later.  However, Louise got in touch and asked me to go in as they wanted to redo my viral load test because they weren't sure it was mine as there was quite a significant difference after 2 weeks.  I did the repeat test and 10 days later, she confirmed that my viral load had dropped to undetectable and it had done so after 2 weeks.  I kept saying to them that I was superhuman ;-)

 

I went for my most recent visit last month on 17^th December.  My appointments are longer now because I have to do a blood pressure reading on arrival, get weighed, get bloods taken, provide a urine sample, fill in the paperwork relevant to the study and I was seen by the consultant this time as Louise was away.  He asks how I've been getting on with the medication and I tell him that I've had no noticeable side effects and that I feel fine.  I do another blood pressure reading before I leave and then I head over to the pharmacy to collect 4 months' worth of medication.  Two days later, I phone to get my CD4 result and it's 819.

 

I know that the viral load test takes longer to process and on 31 December, New Year's Eve, I phone the hospital and I'm told that it is still undetectable.  After a year that has challenged me, it was nice to end it on a high.  I have big plans for 2014 and nothing is going to get in my way!