Lupus Cerebritis

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arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/9/2010 4:26 AM (GMT -7)   
Hello!
 
My sister was diagnosed with lupus 10 years back. She then had kidney, heart involvement, protien-urea, purpura. She was treated with high dose steroids and the lupus went into remession for 10 years.
 
It is now back and the doctors are saying that it is lupus cerebrities. It started with lot of stress, depression, fevers, vomitings and diarhea. It got worsened with an antibiotic, that gave her butterfly rash. Had couple of ER visits, who gave her 120mg solumedral. Then a week later she had a seizure, went to the ER, got an MRI, which said there was some white matter spots. No new medications, came back home. (She was still taking prednisone at 40mg, hcqs, CA, vi-d). Couple of days later started the psychosis, her psychiatrist gave her anti-psychotics which helped a little bit. Then two days later the fevers were back at 103, high bp and hish pulse at 150. Went for an echo, and they found fluid around the heart. Admitted back to the ER, WBC went was at 1.9, stopped all medication,  got high dose steroids, wbc went back to 5, treated the heart and pancreas with meds, had protien-urea, kidney biopsy came out normal. Now she is doing a little well, but is very irritable, hardly eats anything, gets irritated with the slightest of sounds, doesn't talk to anyone, screams at doctors and nurses. The doctors think that the lupus is affecting her CNS and the high dose steroids are not helping. They want us to try rituximab (rituxan). 
 
Did any of you guys had or have lupus cerebrities? If so, please share your symptoms and medications.  How long did take to get back to normal?
 
Thanks you for sharing!

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/9/2010 7:44 AM (GMT -7)   
was she suffering from high blood pressure before this occured? I suffered back in 2006 a seizure with a massive headache and high blood pressure and 105 fever was unconscience and taken to the ER where it showed white areas on my brain was informed I had a stroke (3 years later I found it wasnt a stroke) I had lupus cerebritis and CNS lupus.. more importantly I had something called PRES (Posterior reversible encephalopathy syndrome ) caused from the high blood pressure...i had a spinal tap that showed my blood brain barrier had been broken increasing my chances for infection but it never happened.. large doses of steroids blood pressure meds and normal lupus meds it took 2 months for the spots to disappear its not immediate..2 weeks after large dose steroids i hit an all time low i was diagnosed with steroid induced phychosis.. the outbursts your sister is having is not her its the steroids.. but it could also be affected from where the so called white areas are..doctors said i wouldnt survive but i did.. its now 2010 and the only lingering effect of lupus i have is WHO stage 3 and 5 lupus nephritis..im on cellcept now and im down from 15 pills a day to 5 so it came be reversible if treated correctly and promptly.. my sister too went online looking for advice back when and was a rock for me.. be an advocate for her since she cant for herself now.. i have heard of rituximab infusions never did it but i have heard shortly after these infusions things start turning around.. there are side effects to every meds but somtimes its the only treatment you have available to give your sister the best chance..

big hugs keep me posted im interested to see how this turns out
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/9/2010 10:01 AM (GMT -7)   
Forgot about the spinal tap. They did do it but it came back negative. So thats a good thing. I am not sure why the doctors are saying that rituxan is the last measure. I"m really afraid if this is the end of the road for her. The only issue she is suffereing from right now, is the psychosis and low c3, c4 counts. They took care of the heart, kidney, pancreas, WBC. It has been 3 months now since she is sick. Rituxan has this fatal brain infection as a side effect. So just afraid of that.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/9/2010 1:30 PM (GMT -7)   
Hey arcgud...has your sister tried Cytoxan? I am doing that right now. I have had a few side effects from it but nothing like I had on cellcept. We are actually considering adding Retuxan with the Cytoxan for my kidney problems due to lupus. When my rhuemy was telling me a little bit about retuxan they didnt even mention the brain infection as a side effect which I am taking is a very rare side effect. They said the worst thing might be an alergic reaction to it and that they would give me bendadril before the IV of retuxan. (I think I am remembering the right drug that they would give benadryl for)

They also said that for Lupus, the patient is generally not given even close to the dose that cancer patients get and the lower the dose, the less chance of the more severe side effects. I am supprised your doctor hasnt told you any of this. Hope this helps calm your nerves a little bit.

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/9/2010 2:23 PM (GMT -7)   
with any immune suppresant there is a chance of the fatal brain infection if she did fine on cellcept she will do fine on this drug...cellcept too can cause this rare brain infection but its sooo very rare...the phychosis and the low c3 and c4 thats not as bad as you think...i have low c3 and low c4 i dont have phychosis anymore because once the steroids came down that dissapeared..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 1/7/2011 2:58 PM (GMT -7)   
Thank you guys for all your help! Sorry for not taking time to post since so many months. My sister finally recovered completely after 6 months of flare up from Dec 09 until May 10. I am not sure what did the trick but thanks to the doctors at John Hopkins. They tried everything they could. Rituximab was rejected by her insurance but huge doses of prednisone and cellcept worked for her. Her butterfly rash is all gone too. Its a miracle.
 
My sister is now all better, going back to work. Now that winter started again, she is having little trouble on and off but she is way better than last winter.
 
Thanks for all your support! It is very much appreciated.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/8/2011 7:21 PM (GMT -7)   
have any of you guys had blisters on your scalp...they are extremely sore.No one has paid any attention to them and I have had them since all this crap first came about.

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 1/10/2011 5:16 PM (GMT -7)   
im so very glad things cleared up for her.. i cant speak for everyone but winter is super tough for makes me hurt..os your sister a part of any support groups in her area or online.. there is extra support on f book if she or you wants to reach out..

im so glad everything turned out good and shes back to work thats great news

arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 1/20/2011 7:36 PM (GMT -7)   
She has not yet joined any support group yet. Are they helpful for her? I did look into some of the groups when she was sick but never communicated it to my sister.
 
I just talked to her today, her depression is back. She is in so much fear, we can't figure out why. Not sure if its the weather or her work or just her lifestyle in general. I hope it doesn't get bad like last time.
 
 

arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 1/20/2011 7:38 PM (GMT -7)   
My sister does have some blisters or boils on her scalp. They are usually not painful. But when she had a flare last winter, she did lose lots of hair that too in patches. Its growing back though.
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