psychiatric symptoms associated with lupus

Hi there.

I read somewhere that lupus can cause psychiatric symptoms such as psychosis. I have had a few experiences of psychosis recently and had to go into the hospital and they tried to diagnose me with schizophrenia. I do not believe that I have that condition but I am wondering if my psychotic episodes were somehow caused/triggered by lupus. Can anyone talk about experiences they have had with psychosis and lupus?

Thank you

18 Replies

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  • Yes, there are psychiatric effects due to lupus, even psychosis. Assuming that it wasn't caused by the meds you take or APS (you didn't mention whether you have that).

    Have you suffered with strokes, by the way? Just checking because there is a syndrome with similar symptoms to lupus that causes strokes and psychosis but it isn't very well known, so many rheumatologists would put the symptoms down to lupus anyway.

    I'd go back to the rheumatologist and push him to do some head MRIs to see what's happening there. You're right to associate your psychosis with the lupus, so push for a better diagnosis here.

  • I had a MRI and they said it was clear but I'm concerned that they might have mixed my results up with someone else because the paperwork had incorrect identifying info on it. I feel like I've had a stroke because of severe pain In my head but no evidence to support that

  • You need to follow this up and make sure you get YOUR results or repeat test

  • I talked with a supervisor there at the radiology office and they ASSURED me that those were in fact my results and that the identifying info was just a typo on the write up. So I don't know what to do because they wouldn't agree to do another test on me. To tell you the truth, I wouldn't really want to do it again because it was scary and very loud. I would only do it again if I absolutely had to. I just feel like SOMETHING is wrong because I had severe pain in my head a month ago. Not really sure what to do.

  • Oh and what is APS?

  • Stands for Anti-phospholipid syndrome or Hughes syndrome or sticky blood syndrome. Have you been tested for it? The headaches could be a symptom of it.

    I'd go back and challenge the MRI results on the basis of the wrong information and also ask to be tested for APS (if you've not been tested already, there are 3 blood tests usually done for that).

  • Well I saw the rheumatologist yesterday and she said that psychotic episodes only happen in very severe cases of lupus. She didn't think I'm in the severe range and isn't sure if I have lupus (even though I tested positive on DSDNA). I thought that maybe everything was connected (hallucinating and my other lupus like symptoms) and that it would explain the problems I've been having.

  • Hi adeangelo,

    Sorry, I know you posted a fair while back.

    Just before I had treatment for my last lupus flare I was very very paranoid (and sort of briefly seeing things out the corner of my eye). Roughly a week after doctors increased my immuno - suppresant medications in response to the flare, the paranoia lifted and now I'm back to being my normal. (my normal is to be a little more edgy about people/situations than the average person, especially in times of stress)

    To me it was obvious the extreme paranoia was out of my usual league & due to the lupus.

    With 'some' agreement with your rheumatologist, I do have a serious form of Lupus and my last flare was severe.

    I also have APS. Have done for many many many years. However, the last (& every) MRI i ever had show's a perfectly normal - in tact brain - which always comes as a suprise to me. I take 100mg (low dose) apsrin a day to help prevent micro-strokes.

    I believe very strongly that If you disagree with the Schizophenic, diagnosis - it's worth getting a few more opinions, both rheumatalogical and psychiatric.

    I hope your'e ok now.

  • thank you. still struggling but doing my best to persevere and to try to find answers. waiting for an appt with a new rheumatologist. soonest available is in november :(

  • If you're still struggling as badly as you were 3 months ago, it might be worth seeing if a neurologist is in order?

    Just because things don't show on an MRI, doesn't mean some neuro-chemical - biofeedback thing might not be amiss? Although a good rhuematolgist might be able to test for these kind of things.

    Try and keep away from all things stressful and make being calm a priority. Try not to dwell on the possibilities. Distract yourself with pleasurable stuff if you can.

    Hoping you've got some supportive people around you helping you get through this ?

  • The only supportive people I've really found who understand have been online. So glad that there is this community where we can support each other. Thanks so much for your input. Its been hard to stay away from stressful things because it seems that stress is everywhere I go. I do try to distract myself from the stress as best I can, but I often find that the stress is very difficult to manage. I think that I will feel better once I see the new rheumatologist and can try to get some definitive answers about my symptoms. I saw a neurologist and they did testing a few months ago but they said that I'm fine except for processing disorder. I find it hard to believe that that's all that's wrong because I'm having severe difficulty with my memory and also with basic thinking skills. I wonder if lupus is to blame. I once tested positive for lupus but the rheumatologist didn't think I met enough criteria for a diagnosis. I have other symptoms that look like psoriatic arthritis. Hoping that by doing bloodwork again, the new rheumatologist can tell me for sure whether or not I have lupus.

  • Hi.

    I took a bit of a wack in the head from a car accident which left me with what they called 'a small executive processing problem'. It was explained to me that just from this small glitch - as I travel through the day, the strain of just trying to keep up, over and over and - over again causes not only a lot of fatigue, but rage and frustration that gets worse as the day go's on. All of this causes my mind to become overstimulated & fragmented. It also makes an already slightly wonky memory worse - and a not so calm emotional state - deranged. One of the hardest things i find is when people in everyday interactions are not always very sympathetic. I've just got back from the supermarket and I had to deal with some impatient nasty stares, just because I had to go a bit slower at checkout. Times these kind of grinding experiences by a thousand - over time, its enough to make anybody mentally unwell.

    Only last week I made contact with a neuropsychologist who also specializes in trauma. I'm hoping she can help me find a better way to understand what's going on in my head - and possibly a better way to adapt and live.

    Having said all this, I really hope your rheumatologist can help you find some solid answers as to what's going on.

    p.s.

    A lot of neurons do come back !

  • I have APS alongside Lupus. Before I was diagnosed I was having a lot of Migraines the ones with Auras rather than pain which would lead to it affecting my sight during the migraine and then numbness in bony (worst was when you get a numb tongue and then throat! ) oddly around the same time I had very strange episodes where I suddenly felt that everything around me was unfamiliar and like I didn't really feel like I knew who I was (sorry hard to explain) I thought maybe it was stress or panic attacks. I read about derealization and it seemed somewhat similar. Once I started blood thinners the migraines stoped so did these strange episodes. not sure if it Lupus or APS related but I had never had them before and once on medications for Lupus and APS never had them since, I was so glad as I remember the feeling that maybe I would not feel myself again which lead to panic so glad it seems to have gone away. Never mentioned them to Dr as felt silly as couldn't really explain it and bit worried they might think me a bit crazy! But I do remember one DR saying that it's very hard to see or know the effects Lupus can have on your brain.

  • What is APS?

  • Hi it's Antiphospholipid Syndrome 'sticky blood' where you blood clots too much. I take low dose asprin to prevent clots. As soon as I did the migraines I had went away.

  • Hi Silverbeatl,

    How are you faring now ?

  • Hey! It's been awhile. Sorry I didn't get back to you earlier. Had a lot going on. I'm still struggling...even to get a proper diagnosis. I went for neuropsychologist testing and they said that I have a executive processing problems. I've had a lot of issues with my memory. I tried to go back to the rheumatologist for another appointment, but they said that they didn't have time to see me because they needed to see people that they thought really had a problem. I couldn't believe how rude they were to me! I think they said that to me because I had tested negative on ANA last time I was there. However, I've read that just because you test negative for ANA one time, doesn't mean that you don't have lupus. Right now, I'm just trying to deal with the issues with my primary care. I've asked her to do some testing and to see if she could do a consult with a rheumatologist. I've had hair loss in the front of my head. Its red and scaly in different patches and I worry that the hair is never going to grow back in those areas. Also have issues with the nails on my hands and feet. Went to a dermatologist about it and they said that it was psoriasis. So I don't know, maybe I have psoriatic arthritis. I wish that there was a way to clear it. Its so embarrassing! I still have a lot of fatigue and joint pain and lupus runs in my family. But I don't have the butterfly rash. So I don't know if it could be lupus or not. I also have Raynaud's. So I have a lot of rheumatological things going on. I've also had psychiatric issues in the past. Hallucinated and it was very scary. I don't know if those symptoms were caused by lupus, or by some other reason such as a medication side effect. I just wish that I could get a solid diagnosis so I knew exactly what was wrong and what is causing my issues.

  • Hello Again

    : )

    I'm a bit wonky so I hope this isn't too much of a scramble.

    I've learnt a little about what my brain did during my last flare. I did become somewhere near schizophrenic. (I was irrationally paranoid - not a wonderful place to be. People just run for the hills. A very lonely and scary place to be. Especially when you're physically ill also.

    Only a couple of weeks ago did I get an official medical confirmation that I was suffering from neuro - psychiatiric Lupus. High dose immunosuppression fixed it within a couple of weeks. (sorry - repeating myself) but it was a relief to get this tag as it may help stop the cycle of discrimination that you've just mentioned ie: Abhorrent Rheumatologists.

    Not so long ago I saw a thing on TV that spoke about a new field of study indicating 'traditional' schizophrenic people can suffer from a brain inflammatory process. It definitely might be worth a google.

    Given your Lupus family history and Raynaud's etc. immuno suppression might be the best way to handle your psychiatric symptoms ? Even without a diagnosis. I think it should at least be tried. I believe Micophenolate is good stuff for this ?

    Yes....I wish you could get a proper diagnosis ! It really sounds like some kind of inflammatory illness and I really think its about time you got an answer.

    I don't know whether I'd still agree with your ex - Rheumatologist regarding severity of disease and neuro - psyche symptoms. I think the illness can be nebulous and not always easily detected.

    Has any Doctor given you any indication why you have executive processing problems ? Have you seen a neurologist and had MRI's -etc. ?

    Again - I'm sorry to hear that the Rheumatologists treated you so badly. ie 'You suffered disability discrimination'. Even with a strong SLE diagnosis - this has repeatedly happened to me also. A lot of un - provoked nasty behavior. Usually for just asking questions - but its more of a 'real' and 'recognized' phenomena for lupus people if you're persistent and wont go away regarding your medical concerns. Unfortunately a lot of Doctors score very low on the empathy levels and if they don't have a quick and easy answer they tend to bully. (I've been bullied out of two medical practices - both times with a flare) And I'm a fairly passive person - so there was no justification for it except my vulnerability and their laziness.

    "Its just so utterly wrong on every level" I still think there's a lot of sexism out there still too. With me I think a lot of the moronic assumptions that have been made about me as person over the years has happened because of slow neuro processing and word finding problems.

    Anyway....

    My SLE really only effects my internal organs. Only a slight butterfly rash & very mild arthritis for me. Rheumatologists aren't particularly good at thinking about internal signs of illness and not all of them are trained with any Lupus knowledge (so they do take it out on the patient).

    After a lot of advice from the Lupus site, I've finally graduated to a Lupus Specialist (who's also a generalist specialist - with a broader knowledge of the internal organs) and a nephrologist - (Slightly bung kidneys). Amazingly her first priority was going over my neuro -psyche history. The first specialist to ever take a detailed interest and properly explain whats happened.

    Would it be possible for you to find a Lupus Specialist - with an interest in neurology and neuro - psychiatric symptoms? Often Doctors who have specific areas of interest are Professors ? I literally had to self refer after googling - Rang 'her' office - managed to luck out and speak to her, and then went back to my GP for a referral letter.

    (I am from Australia - and I get the impression the system here is a bit more flexible ?)

    xox

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