My Experiences With Depression From Benlysta
Last updated: March 2023
Despite my best efforts, Benlysta and I cannot get along. Benlysta (belimumab) is a biologic medication explicitly made 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. After that, I was wary of the medication, 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; unfortunately, when depression is associated with Benlysta, it can be pretty 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 ensure 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. There were more severe reactions to the infusions than the injections in clinical trials, 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 to manage it, such as a therapist.
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.
Weighing Benlysta and depression
My rheumatologist offered her counsel on anti-depressant medications. Unfortunately, I've reacted badly 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 severe 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.
My lupus journey on Benlysta
Even though I say I failed Benlysta, that's not 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 Benlysta and look toward other options.
Has a treatment ever failed you? How did that make you feel?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?