Severe Lupus Flare

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arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/8/2010 1:37 AM (GMT -7)   
Hello Everyone!
 
I am here for my sister. She was diagnosed with lupus 10 years back. She had kidney, heart involvement then and completely recovered with Prednisone and other immunosuppressants. Since then she has been on HCQS, Calcium, Vitamin D and tapering dose of prednisone. 6 months back she completely stopped taking prednisone and her lupus became active again. Since october, she has been sick mainly with fevers. She was on and off to the ER, but nothing helped. But now in FEB, she is back in the hospital and the doctors said that it is Lupus Cerebritis. She received 3 doses of 1000mg steroids and still her C3, C4 values are very low. The doctors said that none of the medication is working and she should try Rituximab. We are really worried about its side effects. She already has psychosis, not sure if this is due to lupus or heavy steroid dosage. Her kidney biopsy came out normal (she did have protien loss and took cellcept and stopped it due to sideeffects) and fluid build-up around the heart.
 
Please help.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/8/2010 5:34 AM (GMT -7)   
I do not know what to say but wanted you to know we are reading. Hopefully someone with some experience with the drug you are being told to consider will come along soon. Know that no matter what we are here and listening.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/8/2010 9:29 AM (GMT -7)   
Welcome to the Lupus Forum. All I know about Rituximab is that it is an anti-rejection drug -- there is another anti-rejection med that I used - Cellcept -- and I didn't have side effects and it seemed to instigate a trend toward remission. I don't know if the drs have talked about Cellcept but it might ba an option to look into.

Hope things improve soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/8/2010 9:34 AM (GMT -7)   
You're an amazing sister to know as much as you do about your sister's health and treatment. I'm impressed. I too had to stop taking cellcept and for the same reason. It was a shame because it made me feel so good. I'm unfamiliar with the med you asked about and hope you get some answers.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


arcgud
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/8/2010 4:47 PM (GMT -7)   
Thank you all for getting back to me.

Did any of you guys had sever flare up? If so, how long did it take to recover?

caring
Regular Member


Date Joined May 2007
Total Posts : 26
   Posted 3/8/2010 7:26 PM (GMT -7)   
I'm so sorry your sister is so ill. I, too, was diagnosed with Lupus Cerebritis when I was forty years old. I am seventy-one years old now, so you see - there is hope ! I was treated with high doses of prednisone via I.V. while hospitalized. I remained on tapering doses of Pred. at home for six months. I was weak and had to rest every afternoon, but did go into remission. I have experienced pretty good health but avoid the sun as much as possible and still rest for awhile most every afternoon. I will hope that the doctor/s can find some medication that will help your sister. My thoughts are with you.

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.
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