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My Experience With Long-Acting Injectable ART: A European Patient Pioneer’s Perspective

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Anonymous Patient

Anonymous patient has no relevant financial relationships to disclose.

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Released: November 16, 2022

Key Takeaways

  • I have found multiple benefits with long-acting injectable antiretroviral therapy.
  • I only have to deal with my treatment every 8 weeks. I am not reminded of my infection every day, and I don’t need to schedule daily medications.
  • I don’t have to worry about the stigma of people seeing my HIV medication.
  • Initially, I had some injection site pain after administration, but this became less of an issue after the first 3 doses.

When I was diagnosed with HIV during a checkup visit in my small hometown in 2006, I was shocked and scared. Images circled in my head about people suddenly seeing me as this disease. Also, my family doctor told me that I would have to take medication for the rest of my life, which seemed quite harmful. I refused therapy for years because the daily intake of medication and the idea of being dependent on it for life frightened me.

Over the years, my attitude toward HIV changed, and I dealt with it more proactively. At one point, despite having good laboratory values off therapy, I had developed some physical complaints that I had never before experienced, such as recurrent herpes. During my quarterly appointment with my doctor, we kept talking about starting therapy, and she told me about a new treatment approach―long-acting injectables―that was still in clinical development. When I heard about the research study in 2014, I decided to take part. I figured, “If I’m already affected by this, I can at least contribute by being a study patient.” The chance to get into a study arm with every-8-week dosing of long-acting antiretroviral therapy (ART)was absolutely appealing to me. This was aimed exactly at my wish not to be tied to a medication every day.

My Experience Starting Injectable Long-Acting ART
On the day of my first loading dose, I took a day off work, and although I waited to feel effects from it, nothing happened aside from pain in the buttocks that felt like muscle soreness or cramping after a good workout. During the initial adjustment period, for the first 3 injections or so, the injection site would feel a bit painful for approximately 1-4 days. It is not dramatic pain, but you do feel it. After that adjustment period, I felt like my body got used to it. Today, after 8 years, I often don’t have that muscle cramping. Sometimes I will have pain on the day of the injection, but it goes away by the next day.

I have found that it is helpful to rub or massage the injection site with my hand immediately after the injection to loosen and distribute the medication. I sometimes take ibuprofen (400 mg) on the day of the injection or the day after. For the first 3 doses, I didn’t play sports on the day of the injection. Today, that is no longer a problem―I can go for a run or to the gym.

For a patient starting injectable long-acting ART, I would suggest the following.

  • No sports on the first day.
  • Rub/massage the injection site well immediately after the injection.
  • Consider taking ibuprofen for the first 1-3 days if needed for injection site pain.
  • Trust me that it’s important to have endurance with this, as tolerability will improve over time.

Injectable Long-Acting ART vs Oral Medication
Long-acting ART has changed my views about the image of having HIV and the disease itself. I feel safe. Because my HIV is well controlled, I only have to deal with treatment every 8 weeks, and as a result, I don’t feel that I actually have an illness dormant within me. My partner is also living with HIV. Although he was doing well with his daily medication and doesn’t like needles, 2 years ago he switched from oral ART to long-acting ART. He shares the opinion that not being reminded every day is a real added value. For us, the benefits definitely outweigh the concerns.

For me, the advantages of the every-8-week injectables over daily oral medication are, in order:

  1. I am not reminded of my infection every day. I feel truly free. Constantly being reminded does something to you subconsciously.
  2. Stigmatization still exists. This way, I don't have to keep an eye on where the pill box is at home when my parents visit or in a hotel where everyone knows me.
  3. There is a practical benefit―I travel a lot for work, and this way I don’t have to schedule daily medications.

My hope for the future would be for less-frequent dosing―every 12 weeks or even longer.

Your Thoughts?
What do you think can be done better to allow for easier access to HIV care? Join the discussion in the comments section.

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