Hi my mum was diagnosed with lupus at the end of may. She is now on her second hospital admission. She can’t walk, lift her arms, is incontinent, aggressive, suicidal thoughts. An MRI shows lupus in her brain. She lost her son last February in a car accident and her mum this February from Parkinson’s. Now she’s had this diagnosis. She’s only 62, and thought she was having a breakdown until they’ve confirmed lupus in the brain. My question is, will she recover? She’s had a huge change in personality, I’m unable to visit due to Covid restrictions. She tried to strangle herself last night and ended up with a bed watch. This is all new to us. And before this she was independent and mobile. I’m so worried
Lupus in the brain : Hi my mum was diagnosed with... - LUPUS UK
Lupus in the brain
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Debdoh
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Debdoh, I'm afraid I know very little about lupus and the brain, but I wanted to send you a huge hug as it sounds like you are going through such a difficult time. Sending you and your mum all my love.
Also, to back up what tiggywoos says below, it's worth hanging on to this forum, it's an incredibly supportive space and some members are doctors and nurses and have lots of helpful information and suggestions.
❤️
Oh Debdoh I am so sorry to hear about your mom and what you are going through . I’m afraid I don’t know about lupus on the brain but I am sure someone on here will be able to give you some advice . Please stay on the forum and post whenever you feel you need support . Always someone on here for you, x
Bet Dr 👩⚕️ Himm will have some info ❤️X
Thank you 💕
Thank you 😊
I found this on lupus UK. I hope it gives you some comfort / reassurance
Apart from those patients who have suffered multiple strokes where there may be irreversible brain disease, the prognosis of brain involvement in lupus is excellent. Even in those patients who present with a very extreme form of brain disease such as schizophrenia or seizure, total recovery can occur with treatment and a return to normal lifestyle predicted
Gives me hope too. I have lesions on my brain and they do an MRI to see if there's changes. There are. Dinner fixtures want to treat me as if I'm severely mentally ill. I'm not. The USA is so far behind in research it's unbelievable. Juice been diagnosed with the whole spectrum, except Type 1 diabetes, and HIV. I have the rest of the autoimmune spectrum. I'll send virtual (((HUGS))) for you and your Mom. It's a fight we fight better united. This planet is small. You're my neighbor and I love you guys. ❤️❤️❤️❤️❤️🙏🙏🙏🙏❤️❤️❤️❤️🌹🌹🌹🌹🌹🌹🌹🌹🌹
Thank you - sending virtual hugs back
I expect she is on very high doses of IV steroids? If this is the case that will help the inflammation in the brain but can also cause psychiatric symptoms.
When I first went to Guys I met a lady in the waiting room and we got chatting. It turns out that she got sectioned under the MH act. They thought she had a psychotic breakdown but it turned out to be lupus. She was transferred from the MH Hospital to Guys where she was treated for neuro lupus.
This lady was very articulate, extremely well turned out. I would guess that she was in her early 70s and this happened to her in her early 30s. She made a full recovery and from what I could make out lead a very normal life with the exception that she gets fatigued.
Don't lose hope. You're mum isn't herself at the moment and that must be bloody scary especially as you can't be there to help her.
Thank goodness that they know what it is and she is getting the treatment that she needs.
Keep posting. We're all here for you. X
Thank you 😊
Hello Debdoh, I am not a doctor but I know that when lupus attacks central nervous system, it can manifest itself with different symptoms. I can be something you can ask her doctors. ‘How does lupus effect the brain?,
I think in severe cases combination of lupus attacks would result differently.
It must be very worrying and stressful for you and also for your mum. Sending love and hugs, L x
Hi
You’ve had some really positive replies re recovery so I hope that you can cling on to that.
While your mum is being cared for in the hospital now is the time to put the focus on your self care as the stronger you are the more you will have the capacity to cope. You mention your mums tragic losses but clearly these are your losses too so please put the focus on you and look for ways to cope such as maybe therapy, friends, breathing exercises to calm the nervous system or whatever you find helps but don’t ignore yourself in all of this which is so easy to do when we are worried about a loved one. I have experience of saying I’m fine for years when I believed my family where having it worse than me. I had no idea how much of a toll this was taking on me for years as ‘I’m a helper I’m not helped’ and’ I do I don’t feel’ as Brene Brown said.
So now I check in with myself no matter what is going on around me.
Take care
Thank you for your kind words. You are right it’s been an awful time for myself too with various other things going on too. I do feel like I’m on autopilot at the minute.
The brain is amazing, and with the right treatment as others have said she may recover well. You can take comfort from that she is in the right place and getting treatment. Don't lose hope and look after yourself.
Thank you for your kind words 💕
How are you feeling this morning Debdoh? ❤️X
Big numb I think. Been up early, I’m now on annual leave. I’ve been very busy at work (I’m an oncology nurse) so I’ve been very preoccupied. I think it will all sink it very soon. Tried ringing the ward but no answer as of yet 💕
What a relief to be on annual leave hun . At least mum is in the right place . You’ll definitely get more advice on here on what questions to ask Etc . So glad you posted . I know I sound like my mum but make sure you eat today ❤️X
Hi Debdoh.
I'm at the tail end of a Neural flare - and what I can say from experience is that the neuropsychiatric effects of Lupus effecting the brain and nervous sytstem can make you quite mentally unwell.
But on top of this- ( It's a near sure bet that they're treating her with high dose Prednisolone ) - this particular drug at high doses has some even more devastating psychiatric side effects.
And unfortunately on top of all this again - those trauma's she was going through will be warped, distorted and magnified thank's to the prednisolone.
All.these factors combines makes for a very confronting and confused state.
Unfortunately Prednisolone is our tried and true wonder drug- that in the long term will make things better.
Doctors also usually prescribe prednisolone sparing meds - ( mine was mycophenolate. It's good at crossing the blood brain barrier and getting right into the parts of the nervous system - where it's needed )
It's a terrible triple burden you're mum's going through right now - but as others have said here- the Neuro lupus is so much more treatable than other neurogical conditions and later on with lower maintenance medications - you'll eventually get see a happier - healthier mum.
With neurological issues- it's always a bit of a long and excruciating waiting game to see what happens when things stabilize - but at the moment she would be at an extreme worst and you should be confident that things will improve.
On typing this I'm still a little blippy and warped myself - but I'm very close to being normal again. I have a few annoying cognitive glitches and some mild neuro / physical problems - but compared to how I was at first.......
When you do get to speak to her it's important to keep reminding her that all the mind warping - altered perceptual state factors that are adding to her distress are temporary- and she will regain her mental health.
Make sure you look after yourself too.
X
Thank you for taking the time to reply. What a lovely supportive group. Nice to hear other people’s experiences. I’ve been put off ringing her because she’s very abusive on the phone. She blames me for sending her back into hospital, it’s a good job as she had sepsis. And her speech is impaired so it’s hard to understand her which gets her even more frustrated
Hi Debdoh. I dont know anything about Lupus brain but I do have experience of people being hospitalised for their own good even though they don't accept it at the time. People blame the closest ones, to them, the ones they love, the ones that they feel didn't stop the admission. When your Mum is on the road to recovery from this episode she will realise that you are there for her, she probably won't remember that she was abusive towards you. Maybe you could send cards, messages etc to express your love. Dont give up hope but also give yourself a break, dont feel guilty if you don't ring her for a couple of days . If you feel better to ring her though, let her have her say but as hard as it is don't take the abusive behaviour to heart. Take care keep strong.
Hi. It seems you have a lot of courage. God Bless and I pray you have a good day at the end of this flare. May I ask what sets it off-the flare? And how often? Is it totallyUnpredictable? Thx.
She only started with symptoms at the end of may, she’s not been right since, she came out of hospital and started on immunosuppressants, a week later I saw her and she looked ten times worse. I made her go back to hospital, where they said she had sepsis from a kidney infection, and now all this started. She was having falls at home. Now she can’t lift her arms or walk. I kept telling them on the phone that she was normally independently mobile, and they finally did an MRI and other scans which confirmed lupus in the brain. We’ve not had chance to find out what flares her lupus because she’s not been better yet, if that makes sense.
Hi Debdoh,
I'm so sorry that you had to fight so hard to convince Doctor's that she needed help.
The short answer to what causes lupus flare's is - absolutely nobody knows. Its just the nature of the illness to flare up and then settle. Try not to look for a cause. There are a lot of theories out there - but most of them don't have much research attached.
Lupus has a mind of its own and it can rear up very quickly, be very fast moving and aggressive - especially the first time it happens - which sounds like what is going on with you're mum. When she was diagnosed in May - its possible (?) that Doctors had no idea how her SLE was going to present. Now they definitely know.
In reality - the most important aspect is for Doctors to understand what level of severity of SLE illness you're mum has - how it behaves with her - and for them to get the medication right to keep it controlled in the long term.
HI Titters,I'd probably had a very mild simmering of neuro symptoms on and off for many years without realizing it. I have renal flares, along with other internal organ involvement and I believe some mild - undetected neuro involvement came along with them.
Despite complaining about new cognitive problems two years prior to the discovery of this latest neuro flare - it was fobbed off as psychological / somatic / fibro issues.
What bought this last - more scary flare on was a new Rheumatologist - probably taking one look at the medical record full of the above diagnostic overshadowing - and withdrawing me from 5mg of Prednisolone which had kept my health somewhat stabilized over a life time. (when supplemented by azathiaprine or Mico)
To all intents and purposes - my pathology showed I'd been in complete remission for a few years and she thought my brain/heart health would be better off without the stuff. Sadly for me - (at this point I'm not sure whether this was due to me having a previously un recognized sero - negative aspect of illness - or because of the nature of the blood brain barrier - but the pathology wasn't accurate.
There seems to be a trend on with Rheumatologists ( in Australia at least ) that Lupus patients are better off - off prednisolone - but both of us learnt the hard way that for me that's not ever going to be true. -In the words of this Rheumy " I'm one of a cohort of patients that can never go off 5mg of Prednisolone"
She expressed this as if it was rare ?
Good Morning. Your lupus story reallyMoves me as Debdoe as well. Here in USA my doctors equate prednisone
As “poison.” I was advised to increase
My gabapentin dose / I have intense
Nerve damage with a non cancerous
Growth inside my spinal cord. Without
The high dose of gabapentin I can not
Lift, walk, sit in a chair, wash my own
Hair. In the last 5 years, all my kids got
Married (huge productions which
Pretty much did me in) and now they
Are all having children at the same
Time. This is all great news. But it
Is background for my discovery of
Prednisone. I asked my Rheumatologist if I could do a pack of
Methyl prednisnisolone several times over
Those years, supplementary to boost
Me up. Very effective and then the packs were not enough and reducing in the manner as prescribed was too harsh for me. He agreed to let me experiment with 5 mg. Of prednisone
Along with hydroxy. I felt wonderful
For a whole year. Then one of my
Doctors, an Endocrinologist esteemed
Throughout the world(sounds like
A brag it’s not I’m lucky he’s on my team) he was angry. Said no one would want to operate on me with that small
Amount. Get it to 3 mg. So I did. And
Now I lead a half life again. This is
Getting long. My Rheumatologist wants to add methyltrexate to my
Regime and get rid of prednisone. He is good. He listens and basically allows me to call the shots. I just decided
The last few days I’m going to increase
To 5 again. I had a better life. Last, the
Micro bleeds that some people are talking about showing up on MRI of
Brain, I have it as well. Vasculitis, Newly
Diagnosed, have to see another specialist, may indeed put me on more
Prednisone. Lupus affecting the brain
Must be scary. For those affected by it
I pray for the correct, informed treatment. And Doctors willing to
Listen and look outside the box. XxTitters
Hi Titters,
I'm so sorry that you're health care has become a terrible and complex balancing act for you and you're suffering with so many problems.
Prednisolone - and who should take it is a contraversial and difficult issue for any of us to navigate. Especially hard when we have teams of Doctors with differing discipline perspectives with little productive communication between them.
To be honest - I'd still err on the side of listening to Doctors as apposed to looking outside the box. I know its a struggle- but - YOU - getting a clear and open line of communication - is a grinding, mind bending uphill slog - can eventually be effective and help overcome diagnostic problems.
Problem is protracted - prednisolone use aint' so great for the brain either.
Good Luck
xox.
Hello Debdoh, so sorry to hear this and very frightening for your mum and you.
The good news is that the brain is very good at recovering. If you Google professor Graham Hughes (top lupus prof) and brain on YouTube you should find one of his talks where he talks about a young girl with very severe neurolupus and how she made a full recovery and is now a professor herself I think.
I have severe neurolupus (brain changes mainly but also movement, bladder etc) and I make a full recovery inbetween flares. It is hard to believe when you see some of us with brain lupus in a flare with great confusion, strange behaviour etc that the recovery can be so good.
What treatment have they given her? I find 3 days of high dose IV steroids makes me a lot better then they’ll have to find which medication works best for her. It can take a while but you have a very good chance of getting your normal mum back.
There are two types of Neuro (‘brain’) lupus. Focal (which is more like bleeds on the brain) and diffuse (which is often cognitive and behaviour changes). Focal will show on MRI but diffuse usually won’t. You can have both and the treatment is different. If she’s had a bleed that can take longer to recover from but the aggression and trying to strangle herself etc is extremely unpleasant for her and her family but more likely to be quickly recoverable when they get the drugs right. She may have antiphospholipid syndrome too which affects clotting so worth asking the doctors
Depends on the hospital but you can sometimes get around covid rules if you feel you need to see her and talk to the doctors. They have different rules if she’s very confused and not herself as she obviously can’t make decisions at the moment. My husband and son have been let in with me during covid. It’s worth asking especially if she’s distressed. Although distressing for you to see her so different.
I can’t tell you what she’s feeling/ thinking when the lupus is in the brain because we’re all different but when it happens to me it is like being very drunk with a big black net inside my head capturing and changing my thoughts and words. I’m still there but everything is confusing and distorted. I can’t speak properly, objects look like other things sometimes. Last brain flare one of my sons faces changed into a very scary looking face which was horrible for us both because I was screaming at him. Some people get very depressed and/ or aggressive, I go the other way and will feel quite manic and drunk and behave like a child, laughing inappropriately.
But I always get better and am completely normal the rest of the time. There was a grandma on here whose granddaughter was really poorly with it, aggressive and biting/ hitting them. I think she had cyclophosphamide and steroids and has recovered.
Awful for you but lots of hope too that she’ll get better. And getting the right diagnosis and treatment now will help so much. Reassuring her that she’s not mad and it’s the disease and she will get better is so important. Making sure she has a good rheumatologist who understands neurolupus (many don’t!) and that you understand about the treatments and can discuss with them on her behalf.
We can all help you on here xx
Thank you for your reply. It’s very reassuring to read. I’m trying to ring the ward myself. I was going to ask if I could visit due to her distress. I’m a nurse myself and have been flexible in certain situations. I will ask today when I get through, what medications she’s now on. Hoping she’s had a better night than I have.
Might be worth putting on here which country you are in and if UK whether its north /south etc .. I’m sure there will be someone on here in same area and they’ll no doubt know some of the medical professionals …
I didn’t know it can affect the brain until I had an aneurysm 3 weeks ago. Poor lady and poor you. I was suicidal and erratic. Am well on the mend. Take care of yourself and you will get both of you thru this awful nightmare. 💕
I feel for you both. I have had Lupus in my brain all my life, it’s gone unnoticed by every doctor, GP, and Consultant I have seen except one. A neurologist at UCHL Queen Square. It’s the only tertiary Hospital in the UK. They take by ambulance from anywhere in the UK and are experts on all cases of Neurology including Lupus in the brain. I have an Arachnoid Cyst which I was born with, it hasn’t burst yet. I am 74 and in my case it comes from my mother with Psoriasis giving me discoid Lupus. Good luck I hope your mother gets the help she needs.
Wow. So tough. I'm so very sorry to hear this. Traumatic events often trigger these underlying causes to show up. Please look up the American physician Dr. Brooke Goldner and her book Goodbye Lupus as well as Low Dose Naltrexone for autoimmune. Perhaps once the hospital helps her to stabilize, these solutions can be used to help her heal long-term.
Love and hugs to you both.
~Melanie
I had a bout with delerium and sepsis. I didn't have the best doctors and I'm still not sure if it was sepsis, lupus, or a bad reaction to an antibiotic (I doubt the antibiotic theory). I have had CNS symptoms on and off since the 80s. I'm 68.
In addition to confused doctors, I had siblings who had refused to learn anything about lupus, so I had frightened and ignorant family.
Your mother is very lucky to have you. Keep advocating for her and learning about what she is going through. Also, I felt keeping me informed, despite the delerium would have been helpful to me. I still had enough wits to have absorbed an explanation.
I took about two months for me to stop hallucinating. I don't think I'm any the worse except for a fear of ending up in a nursing home again,
I'm sorry MtnClimber, but low dose naltrexone would have been useless, and early traumatic events are beside the point.
Here is something about post-sepsis problems:
sepsistrust.org/get-support...
One of the amazing things about lupus is how often you can recover with smart doctors, proper treatment and supportive family.
Hi AnnNY. I interpreted Mtclimber as saying traumatic events can trigger the lupus in brain. Not past trauma. PresentTrauma. That would make sense.
Hi Debdoh, so sorry to hear about your Mum. I can't offer any advice but I've just been referred to the Neuro at the rare diseases at QE Birmingham after my recent brain MRI results showed multiple micro bleeds which they are concerned could be Neuro lupus
Thinking of you and your Mum ❤️
Speak to your mum's specialist lupus consultant as they will be able to tell you the situation particular to your mum. Lupus can make you very ill but there is also treatment to help stabilise which her drs will be trying to do. Take care x
I'm so very sorry for your Mothers illness. Prayers for a complete healing.
Hi Debodh I am sorry to hear about your mother I too suffer from lupus in the brain when I was in my 30's I am now in my fifties. I don't have much memory of it thank god but my partner had a very rough time of it. I can relate to what your mother is going through and I feel for the family especially with added restrictions. I can tell you that I recovered although I am not back totally to my former self at and my memory leaves a lot to be desired but there is light at the end of the tunnel. I wish your mother a speedy recovery and all sending you lots of strength and love. Take care xx
I am so very sorry to hear about your mum.. my heart goes out to you both❤
I am of a similar age to your mum & am experiencing 'brain' problems myself at the moment, but, as yet, am undiagnosed.
Please take comfort in the fact that your mum has been diagnosed.. an important first step to aid her recovery.
Sending much love & support 💕
I am so sorry your going through this but here is my take .
Basically your mum like anymore with any autoimmune is needing a lot of vitamin B12 ,folate ,vit D ,magnesium .
I think at some point this will be understood but I’m not alone in making this connection.
I had early onset of dementia as part of many symptoms from PA ,low vit D and I was agressive and depressed and moody .
It all changed thankfully when I got daily loading doses of B12 I was able to reverse it I still have issues that didn’t reverse if I stop daily amount of B12 but on the whole I am ok.
It was terrifying.
I hope that more research is done in autoimmune and deficiencies as it seems to be major.
Stress was the final straw for me I think and switched on PA ,there is Addisons ,psoriasis,psoforific arthritis in family and a lot of thyroid issues ,I also have hypo.
Try to help her gut health with diet ,probiotics and seek a functional medicine doctor if can .
I really hope your mum recovers from this attack on her system.
All the very best.
Thank you. Have been called in as she’s had a seizure. Awaiting an MRI head now. She’s got an Ng tube in to help with her electrolytes as they are out too.
All the best and make sure your ok as need care too x
Unfortunately my mum has been really poorly and is now having seizures. Please prayer for her
Thank you for your reply. Unfortunately my mum has been really poorly and is now having seizures. Please prayer for her
Sending you a massive hug, I’m the same age as your mum and have had Lupus since I was 20. If there’s one thing I’ve learned about Lupus is that it tends to burn itself out and I don’t imagine that would be any different with the brain or any other organ in your body. I’ve only met one person who had brain involvement and she did manage to get it under control. What a terrible time for you and your mum, you’ve been through so much tragedy and I would imagine that’s what had triggered your mum’s Lupus. Like you I lost my brother and the day after we buried him my first symptoms started - I went from being a perfectly healthy 20 year old to not being able to even dress myself in a netter of two days.
Hang on in there, your mum will get better although it may take some time. Always here if you need someone to talk to. Remember to look after yourself, your mum might need a lot of support.
Take care & good luck to your mum. xxx
Thinking of you Debdoh 💕
My mum is now in HDU. With her kidney infection causing her sepsis and antibiotics not working (they think she has a collection of pus behind her kidney from the biopsy), she’s also had a stroke. We were told it’s not good news yesterday. They’ve spoken to a specialist in leeds who have suggested as a final attempt, further steroids and plasma exchange- please prayer for her
Oh Debdoh I'm so sorry. You and your mum have all my prayers. I really hope things improve. Lupus can be an incredibly cruel condition. Sending you and your family love. Also, as someone with lupus myself, I know if I developed neurolupus and found myself unconsciously saying or doing hurtful things to my loved ones in that moment, I would want someone to remind them that it wasn't me, it was the symptoms of the illness and that I love them no matter what the inflammation may make me say or feel or do when I'm sick. So I say to you what I hope someone would say to my loved ones, those hurtful things when she was sick, they weren't your mum. I really hope she recovers xxxxx
Sending prayers now Debddoh. I am soSorry for you and your mum. Mine did
Not have lupus; but similar illness in
Hospital. Does your hospital have a chapel
In it? If so, sit and have a bit of peace. God
Bless, Titters
Devdoh I’ve just noticed your thread . I am so so sorry to hear you mum has deteriorated. Sending you all my prayers and love 💕 xxxxWe’re all here if you need us xxx
Hi just to let you know that unfortunately my mum lost her battle on the 11th august. I want to thank you all for your support at the beginning. It was a short battle, and I think she must have had lupus a long time but never diagnosed, the stress of losing her son and her mum in the space of a year must have caused a flare up, combined with a holiday to Portugal. Hope you all stay well - best wishes
I am so sorry Debdoh. Sending love xxxxx
I'm so sorry for your loss. I'm thinking of you and sending strength and love your way x
Im so sorry Debdoh 😔My thoughts are with you at this awful time..gentle 🤗🤗🤗🌈😽😽xx
Debdoh, I am so sorry for your loss.
My heart goes out to you as you deal with new Diagnosis for your Mom and not being there to comfort her and WORK with the Doctors.
It is vert important for LUPUS PATIENTS to do lots of RESEARCH about Lupus since it does involve the entire body.
This helps as the doctors EXPLAIN to you, and makes you a more PROACTIVE Caregiver.
READ.....these below, and with the specifics of your MOM's ailments, search along with LUPUS to see what you find that can help you on your journey.
Take care of yourself.....too.
Thinkin of you.
"Microglial cells can be seen as signal amplifiers—when they hear a message, they promote it widely. This is especially relevant for inflammation and its downstream effects.
When inflammation reaches the brain, it induces microglial cells to create even more inflammation. This damages neurons. More importantly, it may actually block their creation. That’s because a decrease in new neuron production (called neurogenesis) in a certain part of the brain may have a role in both depression and cognitive decline."
psychologytoday.com/us/blog...
lupus.net/central-nervous-s...
academic.oup.com/rheumatolo...
Lupus Leap
Researchers draw surprising link between inflammation and mental illness, identify potential drug
I am so sorry for your loss. Lupus can hit hard if not controlled and it may have gone diagnosed for years. Stress is a MAJOR contributing factor to the symptoms as they can go undiagnosed for years.
All of our prayers are with you, and you take time for you now.
This past 1 1/2 years has been hard on all of you. I hope that you can take solace in knowing that she is out of pain and with family again.
Prayers for you
🙏
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