Hi! I've been struggling lately and my rheumy decided to put me on Cellcept if I was willing. I hated reading about the side effects, but the possibility of being able to walk normally & not be so disabled won out. So I started Cellcept and prednisone (only 5 mg) once a day.

Here's my question...I'm starting my 4th week on Cellcept. I started with one 500mg tablet in the morning and one in the evening. I did that for 2 weeks.
Then increased to 2 in the morning and one at night, and that's where I am now. Next Monday I increase it to total of 4 tablets a day.

During the first 2 weeks, I had about 3-4 days where I didn't feel all that different but my husband noticed a marked improvement in my overall strength. But then it went away.

Since that mini bit of improvement, there's nothing. I'm just as decrepit as before, if not even more so. I do notice my drooping eye is a bit better, but I've got pain and now swelling in my arm and pain in the glands under my arm...

I'd rather not be on this stuff at all if it's not doing anything.

I thought I'd see something, ...some hint of improvement by now.
Is it normal not to see even a gradual improvement by your 4th week?

Thanks so much for listening.

Hi,

Sorry you are feeling badly. I know the feeling about wanting relief--YESTERDAY.

I am a Cellcept veteran (about 13 years now). You will need to get up to full dose, which for me is 1500 mg twice a day, for several months to really see what it will do for you. It has to change the workings of your immune system, and that takes time.

Hope you have great success with it!

Thank you so, so much! Hearing this actually makes me feel much better. Knowing that it's normal to not be feeling any different yet helps me a lot.. Now I can just relax, be patient, and still have hope that once I've been on it awhile, I'll see some improvement.
Thank you again.

Hi,
Be patient. As Crmak siad, it takes time. It took me 1 year to notice a gradual improvement and 1 1/2 years to get full benefits. Every time I increased I was hit with a lot of nausea for a bout 3 weeks and then it went away. I take 3500mg daily with no side effects. Hope it is successful for you - I took Imuran for many years and it did not work at all compared to the cellcept.

Thanks for this info I'm currently on 7ml 2 x per day @ 200 mg per ml
So 2800 a day so far there are a few times I was able to stand up without using my hands but that is not consistent.
No real changes as of yet. They bump me up about 1 ml every month.

I have mg and take the generic form of cellcept along with the generic form of mestinon. There s a study from Duke that states that cellcept works eventually. Most patients respond within the first year and all participants responded by the end of the second year. Patients taking prednisone (20mgday) alongside the 1000mg twice daily of cellcept (which is what I take) responded no differently than those taking only cellcept. The time response curves were the same. WIth prednisone usually giving a faster improvement of mg symptoms than cellcept leads one to surmise that taking prednisone with cellcept only makes one hungry with no mg-benefit.

I have been on cellcept for about 6 months. I am just now noticing real improvement. I am not normal, but I am a lot better.