Mental health management can be complicated with AIP

Note: This column describes the author’s own experiences with various mental health medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

In July 2020, prior to my diagnosis of acute intermittent porphyria (AIP), I was prescribed Prozac (fluoxetine) for anxiety and mood swings, which I now know are associated with the disease. I was on Prozac until it stopped working for me in December 2023. I was then placed on Luvox (fluvoxamine) for a few months.

In March 2024, I had to be admitted to a mental health facility for four days due to severe anxiety and depression. At that point, Abilify (aripiprazole) was added to my daily medicines. For months, I was exhausted; all I could do was sleep. Last September, I was taken off Luvox and prescribed Cymbalta (duloxetine). This medicine, along with Abilify, seemed to be effective. However, I had constant pain on the right side of my abdomen as well as nausea and vomiting.

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By the end of last March, the pain, nausea, and vomiting had become unbearable, so I went to the hospital, where I was admitted and treated with Panhematin (hemin for injection) and dextrose. While I was there, I threw up constantly and couldn’t keep anything down — meaning I had to skip my mental health medications for several days.

After suffering from AIP for five years, I’ve learned that my attacks always have a trigger, but sometimes pinpointing the culprit isn’t easy.

When I started improving around day eight in the hospital, I began taking Cymbalta and Abilify again — only to take another turn for the worse. That’s when it dawned on me that perhaps my medication was triggering my AIP.

As I shared in a previous column, both Cymbalta and Abilify are listed as safe for use in acute porphyria. However, when I spoke with a woman who works with my hepatologist, Herbert Bonkovsky, in Winston-Salem, North Carolina, she noted that she’s seen other porphyria patients have issues with Abilify. So I made the difficult decision to stop my mental health meds.

Getting back to myself

Until a few weeks ago, I felt like I was experiencing life raw. I was sad, scared, down, hopeless, doubtful, anxious, and severely depressed. I had crumbled to my core, and all I could do was lie in bed and watch Facebook videos. While I laughed at them periodically, I had largely dissociated from the world. I reached a point where I couldn’t take it anymore.

Thankfully, I had an upcoming appointment with my psychiatrist, and together, we decided to start me back on Prozac. We knew it was safe for me, as I’d tolerated it for three years. Although it took about nine days for the medication to get into my system and start working, I now feel alive again. I have energy and a sense of peace and happiness.

Even though I still experience AIP symptoms, including pain on the right side of my abdomen, pain in my legs, and periodic nausea and vomiting, I feel like I’m returning to the person I’m meant to be. I am a blessed porphyria warrior!

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.