The Connection Between Lupus and Psychosis
The most common neuropsychiatric manifestation is cognitive deficit. However, in addition to psychosis and cognitive deficit, headaches, lupus seizures, peripheral neuropathy and cerebrovascular events may occur. These manifestations may be due to medications or brain involvement, known as lupus cerebritis.
Lupus patients who experience psychosis are generally treated with antipsychotic medications, such as olanzapine, in addition to cortisone-related medications, such as prednisone, and immune suppression medications, such as cyclophosphamide). It may be important to note that steroid medications (prednisone) can actually cause psychosis as a toxic side effect, although it’s not common.
Dealing with Psychotic Episodes
- Keep a journal: If you experience a psychotic episode, write about it. Include what you were doing, what you ate, drank, medications you took and interactions you had. Over time, you may begin to notice certain patterns and identify specific triggers. Perhaps a certain medication or situation sparked an event. By gaining this knowledge, you can make the necessary changes to keep an event from repeating.
- Have a buddy: Because I believe my unintentional misuse of medication strongly contributed to certain psychotic events, I relinquish control of my meds to my husband from time to time or when things aren’t going right. Sure, I keep a calendar and a pill organizer, but if I’m struggling with confusion or memory loss in the midst of a really bad flare, these devices may not help. I have also discontinued (through tapering and with the assistance of my doctor) specific medications that I was able to identify as “psychotic culprits.”
- Make a video or write a letter to yourself: I know it may sound corny and it’s a bit like the movie 50 First Dates, but it really can help you reconnect with reality! Experiencing psychosis is scary. It’s important to ground yourself and remember who you are, what you are doing, and that you are safe, cared-for, and loved by others.
- Follow your doctor’s advice: If you are struggling, talk to your doctor. I assure you, they’ve heard it before and can be a great source of information and support. Often times, medications can be changed or adjusted to keep your lupus under control and alleviate negative side effects, including psychosis.
- Be smart: I know this is vague, but it is probably one of the best pieces of advice I can offer. If you are prone to psychotic episodes, make sure you have a support person nearby who can talk you down, reassure you, or keep you from making a bad choice (such as getting in a car to drive alone).
Fortunately, full-on psychosis is rare with lupus. Although it can occur, it’s important to remember and understand that your friends and family care about you and they will worry if an episode should take place.
Often times, the things people do or say in a state of psychosis scream out, “please, help me!” When those you love and care about answer that call, trust them, rely on them, and accept the comfort, advice, encouragement, love, and support they offer.
You might feel vulnerable and judged, or want to roll up into a ball and disassociate yourself with the outside world, but in all honesty, that isn’t going to help one bit. By openly sharing your experiences, you are more likely to help yourself because you are facing the problem head on with strength and determination.
