Welcome Ashely to the forum!

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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/4/2009 9:30 PM (GMT -6)   
Hello Ashely, Gaye and Steve!
Welcome to the forum! I've started up a new "thread" for you.  Didn't want you to get overlooked and lost in another thread topic. I've pasted your posting below for others to read and respond to.
I don't have any experience with Lupus cerebritis, but others do. I'm so glad to hear that Ashely is going to have those tubes removed and start eating.  You all have had a very stressful Christmas.  Is there any idea when she'll be going home?  Please ask any questions you need to. We're here to support and encourage and advise as much as we can.
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.

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

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 1/5/2009 11:46 AM (GMT -6)   
Steve, Gaye, and Ashley, my heart goes out to you. My lupus is not as advanced as Ashley's so I can't be any help with the medical side of her problems, but as a mom and a lupus patient, I offer you my sympathy and moral support. How old is Ashley? All of you might get some benefit from the moral support we all offer to each other on this forum. There are people here from their teens to myself, whom some folks would call a senior citizen. Having a chronic illness is a struggle, but many of us find a way to have a happy life despite feeling bad much of the time.

I hope you'll get some answers here from someone with lupus celebritis.

Hang in there.


SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 1/5/2009 12:31 PM (GMT -6)   

I too think that I am a senior citizen.  When I first found myself in this forum, the people seeme to be much younger than me. It was good to know that I am not the only 62 year old woman here. 

You will find the support you need here.   many good people, many skills, and much knowledge here.  I am not much on the naming of things, or the reason of this and that.  But I know I can count on others that do seem to have a better education with Lupus than I do.

Thank you for finding us, and please do keep us informed as much as possible.  i know that you have a full plate already, but when you can I hope you can tell us how things are going.

Hope the day will bring you something good.


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/6/2009 1:26 PM (GMT -6)   
Hello and welcome. Like the others said, this is a great place for support and information. I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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