A woman looks into a benlysta infusion bag as it empties into her, and her reflection shows tears streaming down her face.

My Experiences With Depression From Benlysta

Despite my best efforts, it seems that Benlysta and I just can’t get along.

Benlysta (belimumab) is a biologic medication made specifically for lupus. After relying on antimalarial (hydroxychloroquine) and immunosuppressant (azathioprine) medications for several years after diagnosis, I needed something more to control my lupus symptoms. Benlysta was my next step.

In 2019, I tried the Benlysta self-injections for 12 weeks but stopped due to insomnia. I was wary of the medication after that, but a year later I agreed to try infusions instead. The first 2 went well but after my third infusion, I started to experience depression.

Shortly after my fourth infusion, the depression hit me like a brick wall. It was awful in a way that’s hard to describe. I had not been experiencing any depression before I started Benlysta and, unfortunately, when depression is associated with Benlysta it can be quite severe.

Talking to my doctor about depression

When I spoke about my concerns, my rheumatologist became alarmed and immediately wanted to discuss what plans we could put in place to make sure I was safe. She took it very seriously – as she should.

Benlysta is known to carry an increased risk of depression, suicidal behavior, and suicidal ideation. In clinical trials, there were more severe reactions with the infusions compared to the injections and there were 2 suicides.1 A post-marketing study of Benlysta conducted in Canada also found serious psychiatric events and advised healthcare professionals to carefully evaluate their patients throughout treatment.2

Though I have experienced depression a few times throughout my life, the fact that I did not have baseline depression when I started Benlysta made my situation more complex. I didn’t have anyone, such as a therapist, in place to manage it.

This was a new situation for my rheumatologist since I was her first patient to experience the onset of depression as a side effect. Her other affected patients had experienced worsening of their existing depression. These patients were already under the supervision of a mental health professional who could modify their treatments accordingly.

Choosing my next step

My rheumatologist offered her counsel on anti-depressant medications. Unfortunately, I’ve had a bad reaction to every SSRI/SNRI anti-depressant I have tried. Other options were either contraindicated or carried a higher rate of side effects than I was comfortable with.

Furthermore, I did not want to treat depression that occurred as a side effect of medication. Especially a brutal depression that appeared quickly and took a stronghold on my life. Even if I found an anti-depressant that worked for me, it could take weeks to kick in and I was already suffering from suicidal ideation just days after my last infusion.

As long as there is another option for treating my lupus, I will pursue it instead of struggling with depression.

I hoped the depression would lift as Benlysta left my system, and thankfully that has been the case. Yet I felt very sad because it seemed Benlysta was helping with my fatigue, joint pain, and rashes even just 2 months into treatment. I can only imagine how much it may have helped after 6 months or a year. I’m disheartened that I had to stop Benlysta for a second time.

Addressing my failed journey with Benlysta

Even though I say that I failed Benlysta, that’s not really true. Benlysta failed me. I didn’t do anything wrong. Benlysta failed my body, steering it into a deep depression even as it treated my lupus. It seemed cruel to give hope and simultaneously destroy it.

However, my rheumatologist expects that I could have a better reaction in a few years, as younger patients tend to have higher rates of depression.3 But, for the moment, it’s time to take my focus off of Benlysta and look towards other options.

Has a treatment ever failed you? How did that make you feel?

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