View Full Version : Info on Cellcept?

10-30-2007, 06:48 PM
I've just been put on cellcept. I've got a variety of symptoms, but the most problematic has been persistent pericarditis. (also have Sjogrens, Reynauds, neuropathy, fibromyalgia, rashes....) We tried methotrexate, and I've been on imuran for quite a while. I was down to 5mg prednisone. I also take colchicine (specifically for the pericarditis) and several other meds for other things. Can those of you who've taken cellcept give me some insight into what I can expect? Risks? Side effects? Drug interactions? How best to take it? I can read all of this on the Internet, but I sure do like to hear it from those who've experienced it first hand. Thanks.


11-07-2007, 12:15 PM
Hi Jody
I tried cellcept a few years ago. I had a bad nausea reaction but I also had that (nausea) with Imuran. I have heard that cellcept is quite effective for lupus. Keep us posted on how it works. I hope you get results soon.
I have to say that the best thing I have done in the last 6 months is take B6, B12 sublingually - my almost contant nausea is gone and my energy is close to normal now. (I still have bad joint pain and am on 15 mg pred/day) But I think its really helped me overall. I am also about to try a gluten free diet (yuck). All the best Jody.

11-16-2007, 10:31 AM
Hi Jody -

Sorry I haven't responded sooner. I try to respond to posts having to do with Cellcept, but I haven't been online very much lately.

Anyhoo, I was on Cellcept for over two years for Stage 4 Lupus Nephritis and was able to successfully get all the way off of it eventually. I took Prednisone at the same time, so some side effects were hard to differentiate. All in all, I didn't have much trouble with the Cellcept. I think Prednisone gives me more side effects. I did end up eventually taking Cellcept with food, even though the first choice is to take it separately for maximum absorption. I also noticed something I call "medicine tummy" frequently - nausea, especially if I didn't keep food on my tummy around the time I took it. My doc did have me take Prilosec to protect my tummy as well, but I eventually went off that when I reduced dosage. My max dosage was 2000 mg a day. I did not work while I was on the max dosage and tried to stay away from sick people as well, but didn't have any problems with increased infections, viruses, etc (did always get my flu shot, too!).

Anyway, I hope Cellcept is as helpful to you as it was to me. Honestly, I'm very thankful for it, because I could be on dialysis if it hadn't worked for me, and I'm thankful I didn't have to use Cytoxan. Knock on wood for the future!

Pretti in Pink
11-16-2007, 04:56 PM
About three weeks ago, I just switched from cytoxan to cellcept. I have been taken two 500 mg a day and next week I go to two 500 mgs a day. So far I haven't had any side effects, but I do take them with food. I am also on plaquenil, will keep you posted.

11-18-2007, 06:54 PM
What's odd, Pretti in Pink, is that my instructions are to take them on an empty stomach...hmmmm. I wonder why that would be? I take 750mg twice a day. I take so many other meds, it's really hard to work in the morning and evening doses on an empty stomach - been a challenge! I hope the stuff makes a difference for both of us!

11-28-2007, 08:36 PM
So, has cellcept been found to be less intrusive and equally or more effective than cytoxan for treating lupus nephritis? What are people experiencing?

My doc wants me to start cytoxan and prednisone for my nephritis and I did start some prednisone last week (mostly triggered by ongoing anemia, exhaustion from pain and exhaustion, and a bit of fear), but I really hope to find a less intrusive approach for healing the kidneys.


Thank you! :lol:

12-15-2007, 09:35 PM
A lot of Nephrologists are trying Cellcept before Cytoxan now, because it doesn't seem to have as many side effects as Cytoxan. But, many "old school" Nephrologists still stick with Cytoxan, the old standby, because it does have more research and a good reputation. I have heard a lot of success stories from Cellcept and there is more research being done currently.

Good luck!

01-11-2011, 09:53 AM
I had good results with the cellcept for over 4 years. I was taking 2000 mg daily. I had no nausea, but did have diarrhea occasionally. IThere were no specific instructions as to full stomach or empty one when taking it. I just took it before I went to bed, thinking if I did get nauseas, I would be asleep and not know!!!!!! LOL