My Neuro wants to put me on Cellcept. Just wondered what other's experiences have been in regards to how it has worked and side effects.

I started Cellcept three weeks ago, 1500 mg per day. I do not have any GI issue, so far. It can take up to 5 or 6 months for Cellcept to become effective.

Cellcept is favored by most in the forum over Imuran. I had one Stanford trained neurologist who strongly recommended Imuram. I had another UCLA trained neurologists who strongly recommended Cellcept. How is a patient to know?

Welcome to the group,

-Mark-

I'm on 2500mg of Cellcept a day plus mestinon and prednisone. I seem to be pretty stable. I took Imuran for 12 months and it made me sick as a dog. I lost 45 pounds. But remember each of us are different.
Mike

I have been on Cellcept since September 2013. I am taking 500 mg three times a day. I have not had any side effects and my lab work has been perfect. I started feeling better within 6 months.
Currently, the heat and humidity has been causing more shortness of breath and fatigue. I really hate summer
Good luck to you
Sandy

Sandy,

Were you on Prednisone too?

-Mark-

I was on Cellcept for 10 years - started at 1500 mg/day and gradually increased to 3000, Never had any side affects and my blood work was great. After a major crisis in 2010, I switched to Imuran because it didn't seem the Cellcept was working as well as it had been working. Also did a year of Cytoxan infusions which I give credit for helping stabilize me to the point I am at now. Am currently on 200 mg Imuran/day.

Good luck!

How will I know if the Cellcept is working as I begin my second taper? Is the only measure, the lack of symptoms? I am at the 1500 mg dose. Is this likely to increase going forward?

BTW, Sassy does not appear to have change much over the summer

-Marl-

The only way to know it is working is that your symptoms don't get worse as you taper off other treatments. I always forget to add that I am on IVIG also. I go weekly with .5gm/kg of weight. I used to go bi-weekly with 1.0 gm/kg of weight, but the 2nd week I was much worse than the 1st week. I talked to my neuro and he agreed that we could lower the dose and make it more frequent. I've been doing this for about 3 months and so far, I am more stable week to week.

My neuro is great about calling me back quickly and being willing to try changes in my meds. He understands that not all mg patients are the same. I have referred 2 other mg patients to him that I have met in our area and I have told him I am going to make him the mg expert for our area. He laughs and agrees he will try. Out of the 7 neuros in his practice, he has the most mg patients by far. He told me I made him feel guilty if he doesn't take any mg patients who call looking for a neuro. I told him that's what he gets for being understanding and able to communicate.

Sassy doesn't change much month to month. She is 11 years old now and I keep her hair pretty short!

Mark,
I was on prednisone 10 mg a day when I started Cellcept. After 4 months I started to wean off.
Sandy

Sandy,

Were you previously on a higher dose?

-Mark-