Cerebral Lupus?

Follow-up from today...

I met with the wonderful Prof Hunt at St Thomas' in London this morning to discuss my recent condition. I wrote a bit about my antibody / transplant issue recently and having to choose my own treatment with no evidence that it works. Well, today I went to get a second opinion about what I should be doing to protect my transplant and body generally against Lupus...

So, long story short, the brain fog, the crying, the short-term memory loss is more than likely "cerebral Lupus"... I am having another brain scan to make sure it's not the sticky blood killing bits of my brain but Prof Hunt is fairly confident that it is cerebral Lupus. She is also fairly happy with that as she is confident that it can be managed with the drugs I'm on now.

I live life in a semi-constant state of denial so with hindsight, I should have realised this was a flare up weeks ago but assumed I was just stressed (I am terrified of becoming a hypochondriac, so sometimes go too far the other way).

The concerns that I have about the drugs are that in the past, the levels have been to high, and i have ended up with shingles and viral meningitis as a result of being overly immuno compromised. So the balance between the lupus being active, damaging the transplant and suffering with other complications is a delicate one.

The other concern is a bit more basic - Cerebral Lupus?? I am concerned about losing my mind (literally). At the very least, losing my ability to think properly. I work in a high-stress job where logic and making decisions are the bulk of my job, also multi-tasking... I have a few coping mechanisms when i have a milder flare up, writing lists and setting reminders etc

I don't like to read up about these things on the internet because generally it gives you a worst case-scenario, but if anyone can steer me in the right direction I would be very grateful! I desperately don't want to give up work....


Tx xx

7 Replies

  • Tasch...my concerns as well. Not working because I feel I am too brain fogged sometimes. And I am afraid of high stress making things worse. I worked years ago for a CPA and it was a busy office I was running by myself until he joined with another partner. At times, I was disoriented, couldn't remember things. Finally a co worker joined and we started a notebook and jotted down notes of the day. This worked. I left for other reasons, but feel I am a lot worse than I was. Some days I feel like I can work, today, I am disoriented. But, I am not on any medicine yet,so if the dr. Says there is medicine to help, fantastic. I usually hate denial, but lately, I think it might be a better idea. Evey new symptom makes me feel more and more like a hypochondriac. I would love to chat about your kidneys. I have some issues and some days worry. My kidney dr. Dismissed my worries and said I was fine with only some scarring on both kidneys. I will try to send u a message. Thanks.

  • Thanks.

    Anything I can do - I'm here. Tx xx

  • Vvvvv much feeling for you

    Have been keeping a grip on myself through years of increasingly worse constant cognitive impairment due to what has turned out to be my infant onset SLE progressing untreated systemically.

    I had a wonderful career despite constant health probs and increasing cog imp....sometimes I wonder how I managed it....I had vvvv good employers who were v kind....and I was highly motivated + desperate for the income....but in my 40-50s the recession hit and my health got even worse....and I had to stop work, so took voluntary redundancy.....BUT my firm kept me on as a consultant, and I joined my husband's practice part time...and, to my amazement, even though I was vvvvv poorly, and emotionally in crisis, things career-wise were weirdly more satisfying than ever!!!!! but my health continued to deteriorate until finally the nhs looked at my autoimmune status...and I gradually retired from everything except occasional lecturing before I turned 60

    In the past 3 years since lupus treatment began, haha, pred & myco seem to help reduce my version of this persistent & worsening cog imp, but it's still there....and, as yet, I've not been brave enough to force the nhs to look more closely at this aspect of my version of this multisystem disease.....in these 3 years since my lupus was finally re diagnosed & treatment began at 58, there have been so many separate clinics to be checked out & treated by, and then myco, especially, began to make a big diff for me last jan.....so, I continue to just want to avoid looking at my brain function.....my head is in the sand....but, hey, life is so much better generally thanks to the meds that are helping me.....

    My version of all this is much milder than yours, tasch....but your attitude does inspire me and I can relate to your post here today....and I wish you all the very best....my feeling is that you have within what it takes to get through this


  • you're so kind. thanks for sharing your story, in a very odd way it is heartening to know that others are having the same issues. I just feel like my head is clogged up with cotton wool! I struggle reading and changing subjects which is so important in my job as a programme management consultant! it's exhausting.

    I'm sure it will get better and my Lupus consultant is terrific and has penned in a call for this week to check for improvement.

    "It will all be okay in the end, if it's not ookay, it's not the end"

    Take care

    Tx xxx

  • Im in exactly the same position as you with regards to the cerebral lupus-and I also don't like to see my consultant with a whole host of symptoms I. Fear they'll think I'm a hypochondriac...I've been out of hospital for two months now following a complete psychotic episode which I thought came out of the blue but looking back there we're tell tale signs such as depression, anxiety, major paranoia. I'm being treated with three months cyclophosphamide and dexamethasone which I receive every two weeks and after that I've to have it monthly. I also take quite large doses of Mepacrin and all the other usual lupus drugs.

    I hope things work out well for you xxx

  • Thanks for your reply. I'm sorry you've had such a hard time. I think we just need to stop worrying so much about what others think!

  • Hi there, I was diagnosed with Cerebral Lupus in November 2014 and I've been taking high doses of Mycophenolate since then. They think that a viral infection kicked off the immune response. At first I was severely and gravely ill - I couldn't walk or talk, brain fog made even watching TV impossible. I suffered from vertigo, whole body pain, muscle twitches and cramps, and buzzing sensations that would keep me awake. I also had profound left sided weakness.

    It was hell on earth at first and nearly 3 years on since I first fell sick I'm still struggling. I manage to work but mainly because I have an incredibly supportive employer and I'm a tough cookie.

    I've recently found out I'm moderately neutropenic caused by the immunosuppresents so I'm catching every little bug going. Delightful 😒

    CL can affect people differently - it depends where the lesions are based in the brain and how many. I had 3 large ones as well as a pineal cyst, mostly in my corona radiate and sub cortical region (I think that's right....).

    Good luck. Feel free to PM me if you want to know anything else.

    Jen xx

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