CellCept: average length of treatment

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Regular Member

Date Joined Sep 2012
Total Posts : 46
   Posted 3/26/2013 11:40 PM (GMT -6)   
Hi, All -
I'm preparing for an appt. with my rhuemy on Thursday, and I was hoping to get some feedback from you all.
I've been on CellCept (Mycophenolate) for 6 months now. My rhuemy and I had initially thought I would only need a 3 month course of treatment.
Seems like every time we try to taper off, my lupus/MCTD symptoms flare up. We've played with 1,000 mg/1,500 mg/2,000mg. (The longest I could tolerate 2,000mg was just three weeks. Then I couldn't take the dizziness, nauseau, and vomiting any more.)
I'm worried about how long it's safe to take this medication. It was a big step for me to try an immunosupressant, given all the risks.
Any thoughts? Any experiences you'd be willing to share?
As always, thank you for your time and support!
Best regards,
Diagnosed with SLE 2010; MCTD 2012
Medications: Plaquinel (300 mg); CellCept (1,000 mg); Celebrex (200 mg)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/26/2013 11:53 PM (GMT -6)   
Has he tried MTX yet with you?
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/27/2013 12:01 PM (GMT -6)   
I never had any negative effects from Cellcept, even at the higher dosages. It took 18 months to reverse & stop some severe cognitive difficulties I was having -- for me it was a miracle drug. I don't recall noting any changes until about 6-8 months...but my memory was as messed up as the rest of my brain, so who knows?

However, we all react differently to different meds -- for instance, Imuran did nothing for me, not good, not bad. Since you are having reactions, I would think it might be good to try another med -- usually Imuran, Cellcept, and MTX are the 3rd line of defense. (After 1) Plaquenil, and 2) Prednisone.

Best wishes,
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 4/1/2013 3:05 AM (GMT -6)   
I have no negative reactions to Cellcept except some diarrhea initially. I responded quite well to Cellcept which controls my flare extremely well. I have serious reaction to Imuran. I agree with Lynn that different people react different. Cellcept may work for some but not others, just as Imuran works for some, but not to me.
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