Before I get in to today’s post, I want to let you know that my content will also be available on PositiveLite.com. I’m really excited about this new partnership. Their site has a lot of great content from all walks of life. To share my story on that platform is to expand the reach of this story, and I hope that in some small way, it helps others who go through the same.
I’ll still continue to write my content here, and it will appear on PositiveLite.com shortly after being published. Whether it’s here or on PositiveLite.com, you’ll see the same content. I want to encourage you to visit PositiveLite.com and read the stories that are there. You can also find them on Twitter, @PositiveLitecom and like their Facebook page.
With that, let’s delve in to today’s post…
Starting treatment is a discussion between you and your doctor. There will be a lot of things taken in to consideration. When I first met my doctor, he ordered a myriad of tests: CD4 count, viral load, as well as the standard blood tests that one person should have done for a regular, annual checkup.
Remember early on, when I said I didn’t like needles? Well, I’ve gotten used to them pretty fast. That first round of tests, there was about 15 vials of blood taken. It was a lot. It wasn’t painful, but because for some of the standard tests you are required to fast, I did find myself getting pretty woozy.
From those first tests, you’ll get a baseline: you’ll get your CD4 count and your viral load numbers. In that first round, my CD4 count was in the low 500’s and my viral load was around 20K. All in all, not bad numbers. Some people will have a viral load in the millions. It’s important to know that the number can be high, or low, but you’ve already taken an important first step: you’re in the care of a professional.
CATIE has a lot of great information on starting treatment, the different types of treatment and the side effects that treatment can have. Again, starting treatment is an important discussion with your doctor. There’s lots to consider.
My steps towards treatment
I was diagnosed in June, and had my baseline tests done in July of 2014. Things were good that treatment wasn’t something that I needed to start right away, but knowing it was coming was in the back of my mind for a long time.
To be honest, it gnawed at me a bit: not being on treatment made me feel out of control. It made me think about having a virus inside me a lot of the time. That’s a tough mindset to be in: to feel “sick”, despite feeling healthy and not knowing with certainty when it would be time for treatment to start.
Being a proactive person and with the thoughts above in mind, I went to the doctor for a check-up in January 2015, where we discussed treatment. My doctor asked me what treatments I was familiar with, and of course I talked about Atripla and Truvada. Ultimately, in that discussion, my doctor prescribed me with Stribild. At this point, it was mid-January. I was ready to start, but I had to line up a few more things first.
I’ll be blunt, and I bet I’m about to say something you already know: HIV medication is expensive. While I work full-time and have excellent medical insurance, not all HIV positive people are that lucky. Before I went off to fill my prescription, I looked in to my drug plan. I needed to see that Stribild was covered by my insurance provider, and if there was a maximum amount that they would pay. Thankfully, I’m fully insured. My drugs are covered at 100%, so my out-of-pocket cost is absolutely nothing.
I don’t mean to brag about my own good fortune when it comes to benefits: I recognize that I’m one of the few, instead of what should be the majority. Thankfully, in Ontario, there is the Trillium Drug Benefit, which would have also provided coverage. If you don’t have benefits through work, I really encourage you to look in to your provincial or state drug program. Many of the drug companies also offer some cost coverage, so be sure to look into that as well.
Find a pharmacist, and get your pill(s)
After getting everything lined up, I was ready to fill the prescription and start on the road of treatment. I wanted a pharmacy I could rely on, one that knows what this journey is like. I did some research and found The Village Pharmacy in Toronto. They were the right choice for me; I encourage all readers to do that same research. For me, my decision was based on the fact that they offered direct billing (so I wouldn’t have to pay up front and wait for a cheque back from the insurance company) and that they are experienced in providing HIV-treatment regimens. Like choosing a doctor, I think choosing a pharmacist who is compassionate and understanding is important. You’ll rely on them a lot as a partner in treatment, so the right fit is important.
Taking your pill(s)
I put the plural in parentheses because some people may be on a once-a-day regimen, while others may take multiple pills. Regardless, this is the most important part of treatment: taking and sticking to it!
I decided the best time for me to take a pill would be dinner time. It always happens around the same time for me (6 p.m.) and I’m home, relaxed where I won’t forget. To help remind me, especially in the early days when I was adjusting to a new pill-taking routine, I downloaded MediSafe right to my phone. It offers a reminder at the time you set, and it’s discrete: every day at 6 p.m., I get a little pop up that simply says “It’s time to take your medication.” That way, if my phone is laying about, somebody isn’t going to pick it up and find out all about my medication needs. Not that I’m ashamed, but that information is personal and private!
How I feel so far
Starting treatment was the right choice for me, at the time I started. For you, the timing might be different. Again, that’s for you and your doctor to work out and it’s an important conversation to have.
The biggest adjustment is simply getting in the routine of taking the pill. It’s also an adjustment to have to eat a meal at the same time each and every day. But it’s so important you do, so that the medicine is in your body, in the right dosage and you can keep yourself in good health.
Are there side effects? Yes. For the first few weeks after starting, things I used to love were not sitting well: I went weeks without coffee and even longer without wine. But slowly, as your body adjusts, you start to feel like you did before: healthy, strong and ready for life!
This article previously appeared on Josh's own blog The Plus Side of Life here.