How I Found the Right HIV Regimen for Me

There I lay in bed, unable to gather the energy to move. The ceiling fan above me was whirling round and round until the continuous spinning caused me to feel nauseous.

Was my medication causing side effects?

I tried to shift from my position, but I felt paralyzed by exhaustion. My limbs felt too heavy; I felt lethargic... and this went on for months. I was pale, withdrawn, and totally ready to throw in the towel.

I felt sick most days and my body ached. My physical state certainly contributed to my depression, but I knew it was tied to my overall health. I had no other reason to feel these pains, no other illnesses or issues. I began to question the things that I was putting into my body including my medication.

Undetectable, but struggling

My HIV regimen began with taking Triumeq, a prescription designed to lower the viral load enough to become undetectable. Triumeq is widely considered to be well-tolerated and worked to make me undetectable in just two months. This medication is very successful for many patients. I was so impressed by the research on the medication that I forgot that every body does not react the same.

When I went to my first follow-up appointment, it left me with no answers. My doctor asked if I was managing well, and I told her I was, because I was undetectable. At the time, I made no connection between the medication and my symptoms. I thought that since my status was undetectable, the medication was doing its job and something else had to be wrong.

Deciding to change my regimen

A month after that appointment, I decided that I couldn’t take it anymore. I needed relief. I called my general doctor to do some testing and searched for what could be wrong. Although I tried my best, the results fell short. My general doctor encouraged me to call my infectious disease doctor. I felt lost and just wanted to feel like myself again.

Feeling nervous about the change

I arrived at my next check-up appointment tired, as usual. I started to explain my symptoms to the doctor and how “nothing seemed to work.” I burst into tears explaining how every day felt like a battle that I could not win.

She took my words seriously and discussed several solutions before we decided to change my regimen. The idea of changing my regimen scared me and made me nervous. I was so afraid that switching prescriptions would result in losing my progress and returning to a detectable status. I was wrong.

Switching to Biktarvy

My medication was switched to Biktarvy and, within two months, everything had changed. I no longer had the feeling that my limbs were too heavy to carry, and I no longer looked ghostly. I am not sure why the first medication gave me side effects, and I am not sure if the doctors knew either. But I am sure that changing the medication made a massive difference.

I had to remember that proven research does not mean that it includes everyone—because it did not include my specific experience. I had to remember to advocate for myself and to make note of every change that happens to my body.

I am now keeping a daily journal where I can track how my physical and mental health are doing. Trust your gut. After all, it is YOURS.

Do what is best for you.