Lupus Cerebritis

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New Member

Date Joined Jul 2007
Total Posts : 2
   Posted 7/6/2007 2:24 PM (GMT -6)   
Hi: I've just joined today and I am looking for someone to talk to who has Lupus Cerebritis. I've been diagnosed since Aug. 1992 - haven't done bad with it until last couple years; really bad at the end of 2005 beginning of 2006. My flare made me unable to work, walk, talk well, etc. It affected my brain. MRI shows spots on my brain. I've gotten somewhat better but not to where I was before the flare. It messed up my equilibrium badly- my legs feel like they have cement blocks on them; since Jan 2006 I haven't been able to move very much, run, hop, skip, etc. I used to be a professional dancer and I taught dance and choreographed & performed when possible. Now I can't do anything! It's such a horrible loss. I'm seeing a new dr. who has recommended cytoxan chemotherapy. She states it's the treatment of choice for Lupus Cerebritis. Does anyone have Lupus Cerebritis? And what do people think of Cytoxan? I'm kind of scared. I already did Rituxan Chemo (2 days) in March w/ no significant results, yet. I've also tried cellcept w/negative effetcts. Currently on Prednisone 5 alternating with 7 1/2 mg every other day; Plaquenil 200 mg BID; cozaar 50 mg; hydrochlorothiazide 25 mg;cymbalta 30 mg; etodulac 200 mg bid. I hate this disease so much. Thanks for listening. Cphildu sad

Regular Member

Date Joined May 2006
Total Posts : 101
   Posted 7/6/2007 3:38 PM (GMT -6)   
Hi cphildu, I'm am currently being treated for Lupus Cerebritis. It has been by far the most devastating manifestation I have experienced. I am a nurse, unable to work also. I am currently being treated with prednisone 60mg a day and tapering down 10mg weekly. I had significant improvement with the cerebritis after a few days on the higher dose of prednisone. Of course, then there are the side effects of steroids. I have to honestly say, as much as I hate steroid side effects; it's the lesser of two evils compared to cerebritis. I am on cellcept also. I was already on it when the cerebritis began. I have done cytoxan in the past for kidney lupus. I was nauseated with it and my hair thinned. Anything is worth a try to combat the cerebritis in my own opinion. I truly pray that you find the right treatment. Hang in there and God Bless you, Judi

New Member

Date Joined Jul 2007
Total Posts : 2
   Posted 7/6/2007 3:47 PM (GMT -6)   
 Thanks for your message, Judi. It's so good to talk to someone else with this. I'm sorry you have had to deal with it. Can you tell me about some of your symptoms? Interestingly, I was on Cellcept, too, as I was getting worse with the brain involvement. I actually, at the time, wondered if the Cellcept was causing some of the problem. God bless you, too. Thanks for taking the time to write. Cphildu

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/6/2007 3:50 PM (GMT -6)   

I want to welcome you to the forum and tell you how sorry I am to hear that you have been so sick for the past couple of years. I can't imagine how hard it must be for you to have given up a dance career.

There are some wonderful folks on this forum, and surely someone here has had some experience with lupus cerebritis, or at least has more information than I do about it. I suffer from plain old SLE and RA and I believe everyone here can all empathize with anyone who has a chronic illness. You'll meet people here who have mild autoimmune disease all the way to a few who are very ill and in and out of the hospital. This is a good place to vent and get things off your chest, and if you've been reading the posts you'll see that we talk about all kinds of issues faced by people with chronic disease. For many of us this has become a sort of extended family.

I understand your statement about hating your disease. I hope you get the answers you're looking for and look forward to hearing from you again.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/6/2007 4:34 PM (GMT -6)   
I don't have lupus cerebritis, but I have continuing atrophy of my brain of unknown etiology--and no one cares to find out why. It is in no way like yours, more like simple dementia. I'm so sorry about your dance career. I was a classical flutist, not famous or anything, but I attended some good schools and played since I was eight and my fingers couldnt reach all the keys (they didn't have suzuki flutes then). I was always hindered by not being able to afford a good enough flute to move forward, and famliy stuff, but when I got social security I went out and got a better though moderately priced flute. I lost all my sheet music which I had since a child, with all the markings from my instructors in a flood in my house when a pipe broke and that was devastating. Anyway, I got my new flute home and went to play and it was excruciating. You see, I had had three neck surgeries, one resulting in a plate and four screws in my neck, since I'd last played. It was so sad to learn that I could no longer play. I write however, and I put all my efforts into that, which I can still do and you can too. You know, sometimes they say the best part of art is the flaws, the little things that make it unique that just happen, unplanned. I think the same is true for our lives. It was never my destiny to be a great flutist I guess but I did inspire another little girl to play, when she heard me play when I still could. I will save the flute to give to her at the right time so that she will never have to go through what I did. I never liked performing in front of other people anyway, always just liked to play when I was alone.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 7/22/2007 2:10 PM (GMT -6)   
Sorry it took so long to reply. My symptoms included visual disturbances, short term memory loss, speech impediment (stuttered), difficulty concentrating and articulating my thoughts. It started out subtle and got progressively worse. My thought process got real disjointed and unorganized and I became irrational. It is really scarey! I'm going tomorrow to see a neurologist. How are you doing? Did you start any new treatments? I hope all is well. God Bless,
Judi (I used to post under Judi, now MJLD; forgot my password!)

New Member

Date Joined Jan 2009
Total Posts : 2
   Posted 1/4/2009 4:03 PM (GMT -6)   
I also just joined today as we search for all the info we can on Lupis Cerebritis! Our daughter, Ashely, is currently at UCLA Medical center after being transfered from our hospital near Paso Robles, CA.  On Christmas Eve, she was admitted with another Lupis flairup which quickly developed into a crisis with seizures etc.  She was stabalized and transfered to UCLA where they removed the breathing and feeding tubes.  We are thrilled that she is speaking and breathing well, but she is just flat worn out from this crisis.  We are hoping to get her "eating" food tomorow.
The seizure meds and steroids have been increased and now we are prepared for the chemotheropy, which should follow tomorrow.  We had a couple of LPs, MRIs, and a week of blood work in preparation, so we are comfortable with the dianostics.  We are a bit concerned with the diaria and general condition as she heads into the chemo.
We are looking for any and all information we can about this form of Lupus, the treatment, and the side effects to watch for.
Thanks and good luck to all of you, too.
Steve, Gaye, and Ashely.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/4/2009 9:24 PM (GMT -6)   
Hi Cphildu,
I wanted to add my welcome!  I'm sorry you're struggling so terribly with this part of Lupus.  I don't have Cerebritis, so I can't advise you very much.  I do think that higher doses of prednisone would help you though.  Like Judi mentioned, she's on 60mg of it. 10/7.5mg isn't very much and usually isn't enough to combat cerebritis.  I certainly hope that this next round of chemo will be the answer for you.  Cytoxan is a very common treatment for us and is usually well tolerated.
I hope we can help you in the future and as you progress through your chemo. We're always here to support and encourage!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

New Member

Date Joined Jan 2009
Total Posts : 2
   Posted 2/4/2009 3:57 PM (GMT -6)   
Hello again,
Ashley is on the mend.  We escaped from UCLA a week ago and now reside at Cottage Rehabilitation Hospital in Santa Barbara.  It is wonderful to see all the success that goes on around here.  We are reducing some of the meds and she is expected to get home soon.
Thanks for your prayers and thoughts,
Steve, Gaye, and Ashley

New Member

Date Joined Jan 2014
Total Posts : 2
   Posted 1/9/2014 2:04 PM (GMT -6)   
Hi CPHILDU, I know this is late but I just saw this. I have cerebritis and all of the symptoms you have. Legs heavy, stumble on speech, could not walk or use left arm. But if you work hard YOU can overcome most of this. Today I walk climb stairs speak I think clearly. And am dedicated to rehab. Still today they really aren't sure how to treat it. First round of rituxan didn't last but the cytoxan was devistating. Second round of rituxan worked great. But I think modern protocol is heavy steroids solumedrol. And rituxan. It does stop it. Now it's up to u. I hope u already learned this.
Good luck. I'm here if u have questions. No it has not been easy. Long and oh so hard but no quitting.


New Member

Date Joined Feb 2014
Total Posts : 1
   Posted 2/9/2014 10:06 PM (GMT -6)   
I was diagnosed w/ UCTD a few yrs ago and this is after what most of us have gone through - multiple symptoms, confused MDs w/ all these crazy symptoms that affect any /all body systems.
I have had migraines since a child and they worsened horribly with all this, 3+/wk. 6 MDs told me to take disability w/ all my symptoms but I wanted a diagnosis before that and I continue to work but very slowly and less hours and it is so hard. I have to think hard for things that used to be instantaneous in my mind and vocabulary. I could type like the wind which got me home faster and I was much more productive.

Only prednisone 60mg had helped my strength, lack of balance, fatigue, talking like a "Valley Girl" per my husband, slurred speech, drooping eyelid, tremors, joints hurt, poor typing that was speed of light before, strange reflexes that change from day to day. There are many more as you know. It also decreased my migraines. It started (well I have had Raynaud's and migraines x yrs) , w/ a likely seizure in 2010 and went downhill from there.)

I was tried on almost everything else mentioned until last visit and I was started on Methotrexate. I was expecting my aching joints to feel better. I have become a bit cynical and really don't expect a miracle from any med I'm given but I will try anything to feel better and get my life back. My joints didn't get any better BUT after a month of MTX 15mg, I had ZERO MIGRAINES! I told my rheum and she said "See, it helped your Lupus Cerebritis". I told her I thought I didn't have lupus and she said, "you don't but you have so many symptoms of it but don't quite meet the criteria". So, I was diagnosed w/cerebritis 3 years after the probable seizure that started everything.

Since then, I asked for prednisone 5mg back ( PLEEZ) and she gave me that, it may be helping a bit w/joints - I don't know, I am also on plaquenil and a slew of other meds. for my symptoms.
My MTX had to be increased to 20mg recently because the headaches were returning. I will be maxed out on the dosage of MTX if this continues. My balance was better on it but not anymore.

I also have a giant right TARLOV CYST on the base of the spinal cord that involves the sacral nerves and causes pain down right leg and sometimes the left BUT also causes fecal/flatus incontinence. I am trying to use the muscles I have left w/ what little innervation down there (that is left) to keep everything in, but hard to work when it is quiet and FLATUS happens. So, some of my symptoms from waist down are most likely from Tarlov Cyst ( usually doesn't have good outcome w/ surgery) and some from lupus cerebritis.
I have had longterm anxiety/depression so I don't know if from lupus cerebritis or psych. diagnosis along w/ this on top of it now.

I am so sorry for everyone who has had their lives halted by this and I don't know if I helped or not but I am out here too. I hate the fatigue and my cognitive slowing the most as far as cerebritis ( although no smaller brain size but many spots on MRI).

Not sure about the bowel thing but I'm really hating it and not knowing if going to get better, stay the same or get worse - just like all of us and our symptoms- neuro, neurosurg and rheum - none want to claim it in their department.

New Member

Date Joined Jun 2014
Total Posts : 2
   Posted 6/9/2014 10:35 AM (GMT -6)   
I was diagnosed with lupus cerebritis/CNS lupus in October of 2011. This was after going undiagnosed and misdiagnosed since January of that year (9months). I was tested for allergies, rheumatoid arthritis, liver disease, infectious diseases, cold/flu, and all sorts of things. I traveled around CO searching for a doctor that could help me.
My symptoms were quite random and began with joint stiffness in my hands and wrists. Also an occasional swollen knee (which I attributed to jogging) but then came hives, nausea, sun sensitivity, extreme fatigue, irritability, gradual hair loss, and eventually incessant fevers.
After months of gradually building up worsening symptoms, I got to the point where I was unable to use canopeners or twist the knobs on doors, could hardly get up and down off the floor to play with my then 2 year old daughter, hobbled around like a 90 yr old, was stricken with what I called ''migrating joint pain'' which moved all over my body every day, fevers from 100-104 degrees from August through October nonstop, major nausea, photosensitivity, and headaches. I was truly miserable, all at only 22 years of age.
Since my symptoms built gradually over the summer of 2011, I blamed each one on all sorts of separate issues and didn't know how to connect them since they seemed so random. I have a history of DVT (clot in my leg) from when I was only 15, and was always positive for ANA and other antibodies related to blood clotting and autoimmune issues. I was on blood thinners since age 18 and through my pregnancy with my daughter, diagnosed then with the clotting disorder Antiphospholipid Antibody Syndrome. Later, after my flare, I would realize that it's all tied together with lupus...
I was put on Prednisone in August for the unexplained joint pain. Made me feel terrible in a different way, barely reduced joint pain, and fevers/nausea all that stayed around. Increasing doses up to 40-50mg, which was a lot for me at a small frame 5'1''. Still no answers, docs noticed elevated white blood cells, high CRP and Sedimentation Rate(inflammatory markers), some protein in urine and still couldn't connect the dots. By this point, in September 2011, I was sick, tired, scared, and had no idea if my liver was failing or what and aftermonths of no certain diagnosis my own family was questioning how much I was fabricating symptoms or illness altogether. Trust me- going from an active 22 year old mom and fitness instructor to a debilitated weak blob on the couch was MISERABLE!! How could I fake that?? Well, I certainly wasn't imagining things and that was about to become very clear.
I got an appointment with a rheumatologist in Delta, CO. She suspected lupus right away, but I didn't believe her since all the specialists I had seen for months would guess and be wrong or have no clue. Then they would TREAT SYMPTOMS (this for fevers, that for joint pain, this for headaches, that for rash... Totally missing the point of getting to the CAUSE of the illness). She gave me a strong steroid injection in the ass, and sent me on my way to be rechecked soon. That night, I stayed in Delta with my parents and little girl. I was amazed, my joint pain had seemingly vanished and I could use my hands again!! I was ecstatic! Thought I was cured, just needed a shot in the arse once in a while and after months of building pain and misery I felt better, finally!! Not so fast... My feeling better quickly morphed into euphoria, then nonsensical speaking, then hallucinations, and my parents rushed me to the emergency room per advice from my rheumatologist.
At St Marys in Grand Junction, they couldn't figure out what was going on, apparently, and since I was hearing bells and seeing lights and supposedly making all sorts of noises and insanity myself, they gave me Haldol- an anti psychotic medication. Well, I wasn't psychotic to begin with, and was actually experiencing Prednisone-induced psychosis which is NOT treatable by haldol. I had an allergic reaction to Haldol and fluid began building around my heart and lungs. Next came diuretics to flush the fluids out, and by this time I was catatonic and they figured they were in over their heads. I was on a slew of meds since my heart rate was also out of control (tachycardia) and really by this time I was ''elsewhere'' in my mind, lost in a cognitive nightmare/wonderland that I was struggling to figure out... Had no idea what was really happening to me at the time.
After multiple spinal taps (LPs) it was noticed that I had massive amounts of white blood cells/auto antibodies in my cerebrospinal fluid. Lupus cerebritis or CNS lupus was suspected so I was flight lifted to Denver to stay in Intensive Care at University of CO Hospital where a renound rheumatology team was.
I spent 90 days in Medical Intensive Care. The treatment course for advanced lupus/cerebritis is more steroids, now through infusions. Obviously I was extremely sensitive to steroids, and the secondary psychosis remained. I was lost in a world of terrifying thoughts, hallucinations, vivid lifelike dream worlds of torment and confusion. I developed the stereotypical butterfly rash across my face... would've been nice to have that before intensive care! I could recognize my family, but didn't know who to trust. I was convinced at times that the nurses were telling my husband and parents one thing, then trying to euthanize me on their own. I trusted few, and my behavior was erratic and extreme. All I recall is what I was being subjected to in my mind, trying to figure out what had happened to the reality I once knew, while on the outside I would range from a catatonic state to spitting on people (including doctors from what I hear) to kicking or punching or attempting escape. I do recall considering bashing through the windows of my medical experiment cage 7 stories up... Thankfully no one allowed that.
It was truly terrifying. I couldn't discern what was real and what wasn't. I wasn't blackout. I recall the vivid living nightmares to this day. I was strapped by my wrists to the bed at times. Other times they just shot me up with muscle relaxants or drugs to make me pass out. I rarely slept. My heart rate reflected my inner terror and so they gave drugs for that, too. Medical students would occasionally come in to observe me, like some sort of twisted experiment, but it was a teaching hospital and I understand now that those young docs need to be able to recognize Prednisone induced psychosis and mind altering stages of Lupus. Still, it was horrible. I even tried ripping out the port on my neck that was putting medications directly into my heart. Obviously a bad idea on blood thinners, yet I was convinced it was infected and had to go. Scary!

I was admitted via flight for life two days after my little girl's 3rd birthday. She stayed with my mother in law mostly, since I was in no state to be seen. I was also terrified for her, since I never got to say goodbye nor did I really get where she was or why anyway. I dreamed of reliving strange things like childhood experiences at church or far fetched schemes that the devil was playing out. Horrible. I feared for my life, and my daughter. I turned 23 in the hospital and didn't know it. More and more drugs, and I wasn't really eating. I wasted away to about 100 pounds while I was in there, despite them and my concerned family bringing food and smoothies and anything. I occasionally ate if I was out of mind-torment long enough. Sometimes food ended up anywhere but in my mouth. :(
The final treatments were rounds of Cyclophosphamide (Cytoxan) infusions. I was gradually coming out of the medicated and psychotic haze after months, and was allowed to walk arya bit. My legs were unsteady and quite weak. I had lost lots of hair, and was losing more due to the chemotherapy. My skin was dry and pasty, and very white since I hadn't been in the sun all year essentially. I recall looking in the mirror and not recognizing the gaunt and frazzled being I saw. But my family was thrilled that I was coming out of it!! I was still far from normal brain functioning but better than since before the initial butt injection in Delta.

Infusions continued and I was able to leave intensive care and stay with my parents in Denver (December 2011). My daughter got to come stay!! I couldn't believe it, she was so precious. I had missed her and feared for her relentlessly. I was so thankful to have her back, but I couldn't seem to muster the strength to lick up her little 25lb body. Chemotherapy continued and I stayed on Cytoxan, lots of antibiotics, relaxant meds, anti anxiety meds, Prednisone, and my blood thinners. I was a little confused and thought maybe the infusions were for breast cancer. Eventually I was able to do some reading on my conditions, lupus cerebritis or CNS lupus as well as the Prednisone induced psychosis. Creepy stuff. I felt awful and wonderful at the same time, but my moods and behavior were still unpredictable so my mom stayed with me for a few months while my husband worked. I was finally back home in Rifle, CO.

Rheumatology in Denver monitored me closely, and wanted me to take antidepressants and such during recovery. I said no, I knew I would get better once I was eating well and exercising again. After such a severe flare and treatment they didn't really believe me. At the same time, they also couldn't believe I was making jokes and smiling, they had never seen that side of me before! I gradually tapered off the Prednisone completely. I was put on Mycophenolate Mofetil (aka CellCept) and plaquenil to control flares. Over the summer months of 2012, a year after symptoms were first arising, I was on the road to recovery. I took up yoga to build strength and balance, and once I had regained some body weight by eating again, I incorporated way more vegetables, fruits, and healthy fats like nuts and avocados into my diet. I was steadily recovering. My rheumatologist told my famy that it could take 2-3 YEARS for me to be normal again. I was instructing twice weekly fitness classes at my local gym by September of 2012, only 7 months after finishing chemotherapy. I built up to that point very gradually, and listened closely to my body. I also took a Human Nutrition course at the community college in town. Nutrition has become a passion of mine. I also accepted Jesus Christ as my personal Lord and Savior in secret in January 2012 during infusions.
I have since been able to wean off of the CellCept, just stopped taking it about a month ago. Three years after my crazy flare. I was supposedly going to be on that drug for life, but since my inflammatory markers had been steadily decreasing, even with less medication (thank God! And nutrition!)... I stopped taking it since I was getting recurrent sinus infections thanks to immunosuppression and even pneumonia recently. Otherwise healthy and free of joint pain so I attributed the infections to my suppressed immune system.

I am now working on getting off of my final medication, Plaquenil, hopefully by this time next year. I continue to have regular rheumatology appointments, but most of all I have learned to listen carefully to what my body is saying. I do my best to eat well, stay active (I love biking, gentle hikes, walks, yoga-pilates, and dancing with my now 5yr old girl!), and I PRAY. I give all the Glory of my testimony and recovery to God. Jesus Christ is OUR HEALER and I am forever grateful for my health restoration and recovery. Lupus is a journey, a battle, a monster, but still NOTHING prevails over the Grace and Love of our Father in Heaven.
I wish you the very best, do not give up hope even if you are suffering now. Consider the stresses in your life, realize that foods like junk snacks and ''diet'' treats and SUGAR feed inflammation. Your disease is rooted in systemic inflammation but there are things you can do and eat to reduce that! Doctors are not nutritionists. Take your meds and listen, but know that you CAN control many aspects of this ''incurable'' disease. Research a Mediterranean-style eating and lifestyle plan!! It's NO DIET. It is a way of life that feeds your cells so that you have less systemic inflammation and disease activity. Lean meats (occasionally), fresh veggies, fresh fruits, healthful fats like nuts, seeds, olives, avocado, plenty of water and PROBIOTICS (good bacteria that make up your immune system in your digestive tract- try kefir a cultured yogurt type drink or kombucha or greek yogurt or a supplement). All these combined with stress reduction, rest, and faith- You Can Be Healed! Believe it. Own it. And don't hesitate to ask me any questions about my personal recovery, it's ongoing. Love and God Bless!

Michelle Hicks

Post Edited (CNS-Lupus/SLE_notforme!) : 6/9/2014 9:49:38 AM (GMT-6)

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