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New Member

Date Joined Jul 2010
Total Posts : 6
   Posted 5/20/2011 6:56 PM (GMT -6)   
 I've just started a trial on the Drug Cellcept. Thought I'd give it a go as nothing else seems to be working for my Lupus and Sjogrens, but the more I read about it the concerned I'm becoming. How have others gone on this treatment have any of you suffered the serious side effects mentioned. Please help as I don't know to continue or not. Trouble is I'm staring to have a few good days and like the feeling.         

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 5/20/2011 8:33 PM (GMT -6)   
Cellcept is what I consider my miracle drug. I was on a Lupus flare that was giving me major cognitive problems. I didn't even feel safe enough to drive as sometimes I would get disoriented and confused just going to the corner.

I took the full does of Cellcept for 18 months with no side effects (maybe my hair thinned out, but my head was still covered).

My brain function is about 90% back to normal now, and I consider that a miracle when it seemed like I had lost about 70% - couldn't even read or follow a 1/2 hour sitcom for a while there.

Unless you are having signs of side effects or other adverse reactions I would recommend continuing. They have to print all the bad stuff, but they don't print the probability those things will happen, which really is fairly low in most cases.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 5/21/2011 7:04 AM (GMT -6)   
Agree with Lynnwood. Cellcept is a miracle drug. I took full dose of Cellcept for a continuation of 1-1/2 years now and still taking it. It stopped my flare and I am able to off my pred for good. I took Pred for 19 years and only when I started Cellcept, the rhumty is able to take the Pred off from me. I havn't had a flare since I started Cellcept a year and a half ago. I have a strong reaction to Inmuran, so Cellcept is my only choice. I did not have side effects or any adverse reactions (except a few diarheera in the beginning). Yes, I know Cellcept will have a possibility of causing skin cancer, but the nurse told me just to remember to put on sunblock if I am going out. I don't think it's a big deal. I would recommend this drug.
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Candesartan 4 mg

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 5/21/2011 9:16 PM (GMT -6)   
As Lynnwood and Omega have said, CellCept has been a wonder drug for me. I had a severe negative reaction to Imuran and was not sure I wanted to even try CellCept. But I had no problems with it at all and have been taking it now for almost two years. The difference it made was amazing.
Good Luck to you. I hope the CellCept works for you!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

New Member

Date Joined Jul 2010
Total Posts : 6
   Posted 5/22/2011 1:00 AM (GMT -6)   
Thank you all for such positive feedback its so hard to make a decision sometimes. I do feel better on it but was jus concerned about the material I had been reading. Did any of you notice if it helped with the dryness of Sjogrens? I would love to find it helped with the increase of Saliva and tears. And what about the tiredness and not being able to sleep. Thank you all once again.

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/16/2013 12:51 AM (GMT -6)   
Has anyone noticed increased brain fog or dizziness after taking cellcept? I was on 1000mg for 3 mos. W/5mg prednisone for 3 mos, then to begin adding til up to 2000mg cellcept. After 2 mos on tne 1000mg I began having severe, dibilitating dizziness. I have had every test imaginable, seen drs from the rheumatologist to ortho to neurologists & no answer for the dizziness or brain fog(which I had not had before taking cellcept). Placquenal caused sever muscle twitches after only 2 wks, so that is out. A neuro surgeon told me he thought the cellcept was causing the brain fog & I have stopped it. Anyone else experience such a problem?
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