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Could it really be Lupus-Psychosis?

Hey! I'm German, so I'm sorry for mistakes in advance 😁

A few years ago I went to the rheumatologist for taking some blood tests. They came back positive for HLA-B27 gene (must be done only once and I did it twice so far; so yes, I'm really positive). This gene could stand for psoriasis arthritis which is possible (I have nail psoriasis and my grandfather has psoriasis).

Unfortunately my TWO rheumatologists weren't even able to diagnose this disease. I'm still without diagnosis.

But what's bothering me even more is the fact that my blood test came back borderline positive for ANAs and dsDNA. C3 and C4 complements were reduced as well. My rheumatologist didn't even explain to me that this could point to lupus. He let it fall under the table. I saw it when the letter from him got to me! I asked him back then but he hasn't done much.

A few years later: I had a psychosis one year ago and got the diagnosis "schizoaffective disorder" which is a combination of some schizophrenia and bipolar (depression/mania) symptoms. They said I'm having a depression along with the shizoaffective part. I'm really sad because I don't feel depressive and had a psychosis only once. Threfore it's too early for diagnosing me with that kind of disorder!

Today I realised that psychosis is a criteria for lupus as well. Is there someone who experienced the same or has some guidance?

  1. wow you have dealt with some issues. I have not personally dealt with this. Along with blood work there are also some criteria for lupus diagnosis. Unfortunately it can take a long time for diagnosis of lupus. I am listing an article below that may be able to help you ask questions to try and get clearer answers. I am sorry you are dealing with this it can be a daunting and frustrating process.

    ~Racquel~ lupus team member

    1. Hi

      I'm sorry to hear that you have been waiting years for a diagnosis, and I imagine you've likely gone through a lot physically in that time since whatever illness you have is not being treated. Without a diagnosis and treatment we can suffer a lot physically and personally; I know physical suffering has affected my mental health a lot. Of course I can't say what might have caused your episode, but psychosis is a known symptom when lupus attacks your central nervous system.

      I also want to say that I was living in Germany when my lupus began and I had blood work done with a rheumatologist and he also ignored it. He told me it was only fibromyalgia, excess weight, and anxiety. I brought the blood work home to the USA about a year later and was diagnosed with lupus. I was living in a small town in Bavaria, and I wish I had gone to another town where they had a university with medical doctors. Could it be an option for you to go somewhere that the doctors have more experience with autoimmune disease?

      Racquel shared a very helpful article but I wanted to share another.
      Here it says that up to 12% of people with central nervous system lupus have experienced psychosis:

      I completely understand that you don't agree with the diagnosis of depression (I have been through a similar situation - it's very tough to deal with and made me sad as well). Please reach out if you do feel you need mental health support. But I would encourage you to keep trying to find answers about a diagnosis because getting a diagnosis and treatment could help you immensely. It's not fair that it's so hard to get the right diagnosis and to find a doctor who wants to look further and make sure you're okay. I wish you the best. Please keep us updated. -Ava, team

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