View Full Version : How long have you been on Cellcept?

the wingless one
06-02-2010, 08:35 AM
Hi everyone, Just wanted to see how many of you are on Cellcept and how long you have been on it? I have been on Cellcept since I was diagnosed in 2005. Last year I told my rheumy my husband and I would like to start a family soon if possible so he agreed to taper me off ever so slowly. This February my urine & blood results took a bad turn and he sent me to a nephrologist (I have not seen one since 2006). For some reason by the time I saw the nephrologist a few weeks later my numbers had gone back to better levels and the nephrologist said he wasn't sure why I had been on Cellcept for so many years and only just now trying to taper off five years later. He said normally he would have begun tapering after one year of things being under control (after my initial diagnosis I was under good control for 2yrs until 2007). So I was just wondering what others experience has been on Cellcept? The new nephrologist I saw said he prefers to taper people off as soon as he thinks things have been under control for awhile because of the negatives that can be associated with it (cancer, etc.). I am down to 250mg once a day and seem to be having trouble with it...I know if I need the medicine it can't be helped but am curious what other people's experience have been and what your doctors have said about Cellcept and being on it for so many years?

06-03-2010, 03:08 PM
I take CellCept for CNS invovlement (brain's messed up). I just can't get off it...the only time they tried I unded up in the ICU for a couple of weeks.

Been on it about as long as you, I think.

06-03-2010, 08:50 PM
i've been on cellcept (2500 mg/day) for 15 months.. but i expect my rheumatologist to start reducing the dossage the next time i see her.. it took about 6 months to work, but since then my symptoms have been stable and under control..

the wingless one
06-04-2010, 10:22 AM
Dar - =( I wish I knew what to say other than that really sucks. It's good though, even though I'm sure you'd be happy to get off the meds altogether, that you've been able to find something that controls your symptoms. I think I may be in the same boat as you with not being able to stop Cellcept...I'm down to 250mg but I've been having high bp this past month and starting to have some pretty bad arthritis now this week. Fever started this morning but I think that may be from an ear infection (hopefully) and not the lupus...

mortifiedat52 - That is great to hear that things are under control! Please let me know how your tapering goes, my fingers are crossed for you!

06-07-2010, 01:52 PM
I've been on cellcept for three years. I have been begging to get off it. I started at 2500 and I'm down to 500. Some joint stuff this month but my rheumy upped my plaqueneil because she wants me off cellcept as well.

I was also wondering how long people are on this.

I hope you feel better and that tapering goes well and best of luck with starting a family.

06-07-2010, 10:21 PM
I wa on cellcept for about a year and doin real good. However, my rheumy raised my dosage to taper me off the steroids and it ended up being toxic to my system. i wentt through a flare and it was BAD. But I'm back on it on the original dosage(1000 mgs 2x a day). I'm hoping it gives me my vision back and strength back in my legs, as im very weak.

the wingless one
06-10-2010, 04:49 PM
Papillon - I hope that you continue to do well on your tapering! It does seem like in the long run it would be safer to be on more plaquenil and off Cellcept, I used to be on plaquenil but stopped some time ago, maybe I will bring that up to my rheumy and see what he thinks. Thanks for your well wishes =)

LadyMarmalade - I really hope you are feeling better soon *hugs* How long were you on the dose that made you flare?

07-18-2010, 06:01 AM
ive been on cellcept for about a yr now, had to go on it after my lupus took a turn for the worst after my baby was born. My kidneys where fine before she was born but now they have lupus nephritis in them. not bad according to my doctors tho cause the cellcept is controlling it.

Im also in the process of switching to a new drug because my partner and I a thinking of having another child soon. so ive had to have blood test to see if i can metabolise the drug they want to have me on for when i do get pregnant again. Except my doctor said that he needs at least 6 to 12 months.

Good luck to you and your husband with your family. As Ive been told it is truely a blessing to have a child if you have lupus, and I know thats true.