cellcept users

I was on Cellcept for about 18 months and for me it was my "miracle drug" that made my lupus symptoms turn tail and run...I've felt quite well since then.

After a few months my hair started to thin, but not to the extreme - ie my scalp didn't show thru. A few months after stopping the hair started to thicken up again...that was over a year ago and it's almost back to normal now.

I never heard or read the cancer thing - I would guess that depends on the dosage and your current health status. It may mean that your labs need to be done often - mine were about every 6 wks during that time.

Hope that helps a little,

Hey Amy! Cellcept...not the drug for me. I had a ruff time with stomach problems and I had a lot of the side effects listed in the pamplet. But I was also taking 1000mg twice a day. When I was dropped down to 500 mg 2x's a day I could tolerate it. I have been told that it is becoming the new standard for lupus nephritis and most people show remarkalbe improvement...in a lot of cases are showing better improvement than with Cytoxan. And it should also help keep steroids at a lose dow. I was on it from Jan-August and it didnt control my lupus so they moved me to Cytoxan. From the majority of the people I have talked to, they have no side effects or might have had a few stomach issues for the first week or two while taking it. Oh yeah, I had my blood worked checked every two weeks for 3 months and then once a month until i stopped. I agree with Lynnwood, I have never heard of it causing cancer. Let us know how you do on it :)!

How did your appt go today? Did you find out if your kidneys are doing any better?

Ditto to jk2389.

The cellcept has been a miracle drug for me. Right now I am taking 500 mg twice a day. At first I had what appeared to be an allergic reaction, but after restarting at a lower dose, I have been great. To be honest, I was actually doing better on 1000 mg twice a day, but insurance stopped covering it, so I am taking less to save some money (it is very expensive).
BTW, I had a severe reaction to Imuran (almost killed me), so I am truly grateful for the cellcept!

Good luck!!

 I am currently taking cellcept. I havent had much side effects except for mild stomach upset. All my labs have been good but I am on 1500 mg twice a day. I have been having a hard time with frequent flares and I get pericarditis and pleurisy a lot. I am hopeing that I can get down to a low dose of prednisone. Am currently tapering down from 20mg. Have made it to 12.5mg so far. I have tried methotrexate, 6MP, imuran and now this. So far I think this is working the best for me. Hope things go well for you also. Oh and I havent had any hair loss either.

I am also on cellcept for a total of 2 year, and it works miracle on me.  I don't have any side effects from this drug, and I am taking 1000mg twice a day.  It controls my lupus pretty well that the Rhumty is able to tappering down my pred.