What can anyone tell me about cellcept? I know the pharmacy stuff, just wondering about personally?
Cellcept has made a big difference for me, all of my various autoimmune issues seem to be doing better now and I'm finally getting off prednisone. I haven't had any negative side effects.
I take 500mg twice a day. So far, no problems. How much will you be taking?
Hi, I am on 500mg four times a day. Not had any nasty side affects, they seem to be helping. Downside is have to have monthly blood tests, but at least everything is kept an eye on. Hope they help xx
It has done wonders for me I’m currently working on getting off the prednisone
I had quite a few problems adjusting to it. I was nauseated for the first three months I was on it, then that passed. I had unusual skin growths and had to have some lesions frozen off. I developed sores on my legs that took months to heal and I had to avoid the sun like the plague. I live in CA so that wasn’t easy. It did help with the joint stiffness and pain but the nausea and headaches did me in. I recently stopped taking it and feel so much better. I think I may be unusual in my reaction to it. Oh, make sure you drink lots of water as it can lead to bladder cancer.
I have been on it for quite some time- almost a year. I had a little nausea at first but it has passed. I am also on Rituxan infusions every 6 months but I do credit Cellcept for being able to get off prednisone. I am on 1500 mg twice a day. Good luck!
I take Cellcept 1000mg twice a day. I just started that dose though, and I feel a little tingling in my left fingers.. It probably will pass when I get use to the new dosage.
Liz1049......How are the Rituxan infusions doing? I was told it takes some time before I will see results. I had 4 treatments..
Liz1049 said:
I have been on it for quite some time- almost a year. I had a little nausea at first but it has passed. I am also on Rituxan infusions every 6 months but I do credit Cellcept for being able to get off prednisone. I am on 1500 mg twice a day. Good luck!
The Rituxan by far has been one of the best ones I have been on. I am on my third round and I am back to work, full time if you can believe it. I get them every 6 months and besides some aches and upset stomach it does make a big difference.
Cellcept is a good alternative to prednisone, as I think it is not as hard on your immune system. I was on it for a long time and suffered no ill effects. It prevented my lupus from being a nightmare that it was previously. I was taken off of it when my rheumatologist decided to try benlysta chemo infusions, which he hopes will also help my interstitial lung disease - a condition far worse than anything lupus has done to me. But cell cept worked well for me, for what it's worth.
I can think of no side effects that it caused.
Thomas Franklin
I have been on chloraquine for years, back in March they thought it was affecting my eyes, after seeing the retina specialist it was determined it was not affecting my eyes. Before I saw the specialist my rheumy and I discussed the possibility of changing, even though the experts think now anti malarials are most effective for Lupus. I work in pharmacy and told him I didn't like other options out there for Lupus, that I would go without any specific meds. As it turned out I have been able to remain on the chloraquine, but I started researching the other options and cellcept seemed the next lesser of the evils... So I want to know how people taking it have fared, since it may have to be an option one day. Glad to hear you tolerated it well, that is encouraging, thanks.
Thomas Franklin said:
Cellcept is a good alternative to prednisone, as I think it is not as hard on your immune system. I was on it for a long time and suffered no ill effects. It prevented my lupus from being a nightmare that it was previously. I was taken off of it when my rheumatologist decided to try benlysta chemo infusions, which he hopes will also help my interstitial lung disease - a condition far worse than anything lupus has done to me. But cell cept worked well for me, for what it's worth.
I can think of no side effects that it caused.
Thomas Franklin
I had a bad experience with cellcept but that was about 10 yrs ago and it was extremely expensive then. I did not stay on it long enough to see if it made a difference but I did switch doctors and the new doctor gave me alternatives to cell cent which at the time worked really well
Thanks for the responses it eases my mind somewhat that many of you tolerate and do well on it. For the others best of luck with the other options you are trying. Being off prednisone would be and is a big plus, especially since it seems to affect my eyes worse then chloraquine.
I was on cellcept for three years. I was in kidney failure when I started at 3 g/day and it helped save my life. I was slowly tapered off (about 1g/day per year)… She was going to leave me on it indefinitely but I have been in remission for 3 years and this is my last shot at trying to get pregnant. The only side effect I noticed was that around that time of the month I would have bowel issues (sorry TMI :p) every time I ate. It was pretty bad on 3 g and got successively better until at 1 g or 500 mg I didn’t notice it. But it was only during shark week, oddly enough!
I also noticed that the immune system effects seemed to lessen, as expected - I caught a lot more colds and such on 3 g than on 1 g.
Hope this helps and good luck!
Chris
I had to go off plaquenil( eyes) and we tried cellcept. It made me extremely tired, I threw up very occasionally, and nothing tasted right except fruit (and some ice cream.) I lost quite a bit of weight, and gained it all back later. It took a long time to fix my taste buds. I was on it several months snd just kept getting tireder and weaker. After several months, I had a really bad flare and went on benlysta infusions, which made me progressively tireder, and the initial good results went away, so I wanted off that- mostly because I kept getting cellulitis. Turned out, several months later, that I have gout, not cellulitis. And the gout medicine makes me sleep a lot, not just tired, which is weird, but I guess everything makes me tired. Cell cept seems to really help most people. One side effect of cell cept and other kidney immunosuppressants is gout. I hope it works for you. I’m interested to see that I’m not the only one who didn’t tolerate cell cept well. I want plaquenil back, that really worked, but I don’t want cloraquine retinopathy even more. I was on it many years.
Have they found anything that really works for you? Sounds like it has been rough.
Jane Schuler said:
I had to go off plaquenil( eyes) and we tried cellcept. It made me extremely tired, I threw up very occasionally, and nothing tasted right except fruit (and some ice cream.) I lost quite a bit of weight, and gained it all back later. It took a long time to fix my taste buds. I was on it several months snd just kept getting tireder and weaker. After several months, I had a really bad flare and went on benlysta infusions, which made me progressively tireder, and the initial good results went away, so I wanted off that- mostly because I kept getting cellulitis. Turned out, several months later, that I have gout, not cellulitis. And the gout medicine makes me sleep a lot, not just tired, which is weird, but I guess everything makes me tired. Cell cept seems to really help most people. One side effect of cell cept and other kidney immunosuppressants is gout. I hope it works for you. I'm interested to see that I'm not the only one who didn't tolerate cell cept well. I want plaquenil back, that really worked, but I don't want cloraquine retinopathy even more. I was on it many years.
I have taken cellcept 1000mg 2 x a day for a little over two years and it has helped me keep my Lupus Nephritis under control. I haven't had any problems with it.
I am going to discuss it with my Rheumy when I see him in December, and hopefully get off this prednisone, thanks everyone.