View Full Version : More questions about Nephritis and Cellcept
05-22-2008, 07:09 AM
Hi, I had posted a couple months ago that I have Class Three Nephritis. They have started me on Cellcept and Prednisone.
If anyone has had nephritis and was put on Cellcept/pred, I would appreciate hearing your stories. Did it help? How long did it take to work? Is is just as likely to be totally ineffective as it is to actually help?
Also, what I'm curious is, did it actually get your protein loss to go DOWN? I was getting the impression that it would be considered a success if it just kept it from getting any worse. But I really want my kidneys to get BETTER, not just "not worse."
Is that asking for the unlikely?
Pretti in Pink
05-22-2008, 01:41 PM
Let me begin by saying, while you're getting advice and input regarding treatment- everyone is different and their bodies respond differently. I have been and prednisone for almost two years, trickling down doses, now at 5 mg./day and on cellcept since November. The protein in my urine has gone down but has been fluctuating here the last couple of months from negative to 2+, reasons they don't know. Overall, it seems like the meds are working.
05-22-2008, 07:23 PM
Hi Redhead -
Keep your head up! I am a Cellcept success story. I feel like I've raved about my experience so much here that I should be getting a commission from the company! :lol:
I was on 2000 mg of Cellcept a day and 30 mg of Prednisone and saw a significant improvement in 6 weeks - better creatinine and lower proteinuria. My Rheumy at the time told me that we would know fairly soon if it was working, so I don't think they'll let you just stay on it if it's not working for you. Now, after 6 months, my proteinuria plateaued it's improvement. By that time I had moved, with a new Rheumy and a Nephrologist. The Nephrologist said if I didn't start getting better, we were going to have to do Cytoxan. Now, about the same time, they switched my blood pressure meds from Atenelol to Lisinopril and that seems to be keeping my proteinuria in check, even to this day.
Now, I am off Cellcept and only use Prednisone when needed for flares or illness. I was able to reduce the Lisinopril to 20 mg a day, but this winter had to increase again to full dose of 40 mg a day, as proteinuria seemed to start creeping up.
So, that's my short version of my story! I hope it's helpful and I sure hope that the Cellcept works as well for you as it did for me!
05-24-2008, 10:54 AM
I'm also a cellcept success story, that raves about it.
My journey to controlled symptoms was tough and laden with dose adjustments though.
I was at the end of my freshman year of college, and I was having some nasty joint pain and fatigue. I did not have to go through the long diagnosis process, however, because I was already aware that I had lupus from childhood. I was prescribed prednisone, first at 5mg, then at 10, 15,..30. :cry: I was spilling huge amounts of protein, and I was very anemic.
I was stubborn though, and scared... I refused a kidney biopsy and opted to just start cytotoxic therepy. I knew it was obvious it going to say that my nephritis demanded a more intensive therapy anyway. I'm was not interested in high dose prednisone...
that takes me to a similar situation as you are now
I was really nervous about cellcept, and VERY UPSET that my labs were still getting worse and worse. I just wanted to cry everyday. I wanted to get back to college and have the "normal" life that a 19-year-old "should," and I scoured this forum for cellcept success stories. I found some, some not. It depends on the person's individual case. So I hope this helps you out........
I was started on cellcept right away. I was spilling tons of protein, RBCs, WBCs, casts... the whole kit-and-kaboodle. I began with 1000mg, to ween myself into this kind of med. Then 1500, then 2000. I threw up a couple times, but it was nothing horrible.
I gave it 5 or 6 scarey weeks. Labs were steadily not-so great. I was worried I'd have to be on cytoxan while in school. I tried to be optimistic that the cellcept was taking a little time to work.
and so it was. :D
The very week before my return to sophomore year, (~a month and a half after the start on cellcept?) my urine cleaned up, and there were far fewer cells and casts. Thank God.
I live like a classic college student for the most part, except that I'm a little extra determined to get good grades, and I take a bunch of pills.
Pills are not a bad price to pay, right?
I'm still on 2000mg cellcept. I'm also on 10mg lisinopril, 5mg prednisone, and 200 X2 plaquenil.
So I wish you the best of luck on cellcept.
Please let me know how it works for you!