The Lupus Forum banner


471 Views 11 Replies 9 Participants Last post by  SarahP
Hi everone...

I just need some of your experinces when taking CellCept...

I started today after a long delay, my local chemist had to order this in!!!!

Still a little confused about a few things...

Am i correct in thinking the side effects if any will get better over the week/weeks.

If i fall ill i'm to stop taking them, will i have to start all over with the side effects when i do start again,

Will i feel ill not taking them for the short term?

I've started on 1 per monring for the first week and then i'm to up my dose to two in the morning.

I guess what i'm asking is confirmaton that other Lupus suffers are doing the same.

1 - 12 of 12 Posts
hi im on cellcept 4mg per day four kidney transplant and taken them 2years naw with no side effects also mist the odd dose with no problems bundy
Thank you...

Kidney transplant omg.. you poor thing.... You make me sound draft. :sad:

I have what feels like a massive hangover today, and a what i can only discribe as morning sickness feeling!!! :worried:
But i'm sure it will pass.

This may sound comppletely stupid, considering that i have Lupus..

But i hate being ill and i will do anything to avoid it.. I keep fit try and eat well .. to me Vomit would be the end of my world i have not vomited since i was 17 and that was because of the dreaded liquid.

I guess i'm lucky or have been at 42 i gues i have, my tummy tends to make me the other way if you get my drift... lol :rotfl:
See less See more
hi Julie

Did your doctor tell you to stop taking them if you fall ill ? I have never heard of this before. I have not been on cellcept, but have been on many similar type drugs and I always stayed on them even if I had an infection of some sort.

Of course if your doctor told you to do this then you must, but I am just curious as i have never heard anyone mention this before. Maybe I am just clueless here hahaha.

hope the cellcept works for you


See less See more
Julie, I'm on 1000mg twice daily for my lupus. The first week i experienced the morning sickness and a weird fant feeling if i did too much. Now everything seems to be working well. I'm very forgetful when it comes to taking medicine and even if i forget for a couple days i dont get any of the icky feelings afterwards.

Thank you i'm glad that passes... Do you just take yours in the morning, or one at night one in the morning.

Yes my doctor told me to stop if i fell unwell and so did the specialist!!! Someone to do with my immune system being supressed while i'm taking them!!

All a bit odd...

Lots of pains in my feet today and tingling in my fingers but i think thats the weather... (well my mum says i think to stop me worrying and worrying)
Hi Julie,

I was also on Cellcept - I had some nausea for up to 10 days then no side effects after that. Are you getting regular blood checks? That is the important thing to check your white cell count. I am also surprised that the docs told you to stop if you felt ill. normally it is a combination of bloods and symptoms that would force them in to that decision.

It really worked well for me but it's not for everyone and some have to change to another type of immune suppresant. It does seem to be the drug of choice at the mo for lupus patients but can take up to 12 weeks to see the full effect.


Pam xxx

I take 2000mg of cellcept. 1000 in the AM and 1000 in the PM (7 and 4).

I find that even after over 18 months I still get nausea if I take it too close to food in the morning, however have no issue with that for the PM dose.

My Dr told me to stay on it even if I am ill, they add in Anti-biotics as necessary to fight the odd infection (I get strep often always have).

Good luck with it, it has been a god-send for me.

See less See more
being male i dont no wot morning sikness feels like
Hi Julie,

When I first started on Cell Cept I experienced dizziness. After a couple of weeks it passed.

My doctor also has me stop taking Cell Cept if I get a cold or virus. Usually I do fine being off of it for a few days, but I have also flared. Who knows if the flare was from being ill or being off the Cell Cept.

It will take about 4 weeks for the Cell Cept to kick in. I hope it works for you.

Take care,

I take 1000mg two times a day, so 2 pills in the morning and 2 at night.

At first had Diarrhea but after that it got better. Been on it for about 2 months now and no side effects.

I was going to ask does anyone take this with food, even though it says that it works best on an empty stomach? I feel the best when I take it with yogurt:)

Good luck!
CellCept for 2 1/2 years

Hi Julie

I have been on CellCept for 2 1/2 years. It has really worked well for me. I have been able to decrease prednisone to 3.5mg and hope to taper off completely. It is a very slow taper--.5mg every other month!

I take 1000mg CellCept in the AM and PM. I take the morning dose as soon as I get up on an empty stomach with a tiny bit of food along with my other meds. An hour later I eat my larger breakfast. As long as I eat some dry crackers when I start feeling nauseous I am OK. I also take Nexium and that has helped with stomach upset.

I stay on the CellCept even when I get a cold or infection. My WBC is low--3.2 but rheum feels it is OK to remain on CellCept.

Good luck and I hope CellCept helps. :love2:

See less See more
1 - 12 of 12 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.