CellCept: average length of treatment

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,

Nina

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,