Prescriptions 101: CellCept

In an earlier post, I promised to share details of a few of the prescription drugs I've taken for Lupus over the years. In each drug posting, I'll relate my experience with one particular drug, the dosages I took, the side-effects I experienced, and my opinion of its effectiveness. As you know, body chemistry can differ greatly from one person to another, so a drug that works (or didn't work) for me might have an entirely different effect on you. Keep in mind these reviews are written from the perspective of a patient, and should not be considered as medical advice or instruction. The information provided should be used as reference only, or perhaps as a talking point in your next doctor's appointment.


The first drug up in the series - CellCept (generic name: mycophenolate mofetil);
My Rating: A big thumbs up!



I will admit, I'm biased when it comes to CellCept. I consider it one of the wonder drugs in the Lupus community. Within two months of starting the drug, my chronic joint pain began to subside (for good!), I was less fatigued, I had no incidence of angiodema (swelling), and my inflamed, sore throat and glands went away. Within months, my serology (blood tests) indicated that my disease was clinically quiescent (under control), and for once, my physical symptoms indicated the same. I suffered exactly ZERO side-effects from the drug, which was a new experience for me. Many of the other drugs prescribed for Lupus have known, serious side-effects, some of which are more troublesome than the symptoms of the disease itself.

Because CellCept is an immunosuppresant (originally designed to prevent the body from rejecting a kidney, liver, or heart following an organ transplant), my doctor prescribed an antibiotic (Bactrim) at the same time to ensure that my body was protected against infection. I was also on Prednisone for the first year and a half I was on CellCept, but the steroid was reduced to a low maintenance dose of 5 milligrams a day. Eventually, my doctor and I opted to try CellCept on its own, and I had no flare-up once I stopped Prednisone entirely.

Here are the finer points of CellCept:

Dosage: I started out taking 1000mg a day, and eventually ramped up to 2000mg a day (or 2 grams). Even with the increase in medication, I experienced no side-effects at all.

Known side-effects:
Again - I didn't have any of these -

*fever, chills, body aches, flu symptoms;
*easy bruising or bleeding, unusual weakness;
*coughing up blood or vomit that looks like coffee grounds;
*bloody, black, or tarry stools;
*painful or difficult urination;
*chest pain;
*feeling like you might pass out.

Less serious side effects may include:
*nausea, vomiting, stomach pain, diarrhea, or constipation;
*headache, mild weakness;
*swelling in your hands or feet;
*numbness or tingly feeling;
*anxiety, sleep problems (insomnia).

Increase risk of infection; Increased risk of lymphoma (I know - this last one is a biggie...but statistics (and my doctor) led me to believe that this risk was targeted more toward transplant patients than little ole' me.)

Administering: Finding time to take this drug is tricky - you have to take it 1 hour before you eat, or 2 hours after you eat. For awhile, I was taking it three times a day, and found it impossible to figure out when I could eat, when I couldn't, and when to take the pills. I had about a 15 minute window in the morning, afternoon, and evening - and if I missed it, my mealtimes got all screwy. And forget about a late night snack! Soon after I started the drug, I asked my doctor if we could switch to only twice a day, and things got a lot easier to manage. Now that I've switched to another medication that has no time restrictions, though, I admit I'm loving the flexibility!

Cost: Expensive. For the 2 gram dosage I was taking, a monthly prescription retailed for over $800/month. Thankfully, my insurance at the time covered it completely (aside from a $40 monthly copay). I was able to reduce that copay to $20/month by mail-ordering my prescription in a 3-month supply, saving me more than $200 a year. The insurance I currently have covers the drug, but because of my prescription drug annual maximum, they'll only cover two months of a year's worth of medication. I'm not currently taking CellCept, so I figure I'll cross this financial bridge when I come to it.

Limitations: You cannot be pregnant when taking CellCept. This was a big stumbling block for me, but I realized that because the medication I was taking in lieu of CellCept wasn't controlling my disease, I wasn't healthy enough to get pregnant anyway. I opted to start CellCept, in hopes that down the road, it would help get my disease under control for good, allowing me to then switch back to another less potent drug that would be safe for pregnancy. And that's exactly what happened. After three very successful years on CellCept, with practically no disease flare-ups, I switched to Plaquenil (which is pregnancy-safe), waited three full months to make sure CellCept was out of my system, and then got the okay to start trying to have a baby. You know the rest of the story... and yes, Baby Bun will have a shrine to CellCept in his/her room.

I've heard more success stories than not with CellCept, although one of my friends in Lupus group did not have much luck with the drug. Her primary symptom was peripheral neuropathy at the time, and CellCept didn't seem to do much to help that. Thankfully, though, she was able to find another combination of drugs that has helped her pain subside.

That's it for CellCept. Next up: Prednisone!