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Regular Member

Date Joined Jan 2008
Total Posts : 30
   Posted 1/5/2008 3:54 PM (GMT -6)   
Hi, I'm new here but not new to Lupus.  I've had it for over 12 years.  I'm currently having a central nervous system flare.  In the past I've had to get Pulse Steroids and Cytoxan to treat this.  My dr mentioned Cell Cept to me at my visit on Friday.  I'm curious is anyone else is on it and what you think about it?  Thanks!

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 1/5/2008 4:35 PM (GMT -6)   
i've been on cellcept since april "06 after my transplant, the docs are using it as an antirejection med and to controll my lupus, and since they increased it back to 1000mg twice a day after my flare in march i havent really had any problems, just diarrhea that i take imodium for.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/5/2008 9:34 PM (GMT -6)   
I've been taking Cellcept since Sept 06 and have not had any problems with it.

It has very definitely been my 'miracle drug' in clearing up some severe cognitive dysfunction (central nervous system!) I was experiencing, and I am now in process of reducing my dosage to come off of it.

The only side effect for me was some thinning of the hair when the dosage was up around 3000mg per day.

I think that if your doctor thinks it's worth a try for your situation, you should definitely test it out. I would have taken it even if it made me loose all my hair, as it has truly given me back my brain.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Jan 2008
Total Posts : 30
   Posted 1/5/2008 10:07 PM (GMT -6)   
Thanks!  He said it has a lot less side effects than the cytoxan.  I have optic neuritis and they are worried about blindness if not treated aggressive.  Thankfully I only have it in one eye right now.  I'll call him on Monday.  thanks
Lupus and Sjogrens Syndrome since 1995
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day

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