View Full Version : CellCept
05-19-2005, 06:14 PM
I'm going for test next week to determine if I can stop cyxton. In addition to Lupus I have Scleroderma. My lung doctor wants me to use CellCept while my rhuemy feels there is not enough research on CellCept and it is only used as a last resort. Does anyone know about the Drug CellCept? How effective is it? I can finally walk and breath without my oxygen dropping I would hate to have to go back on oxygen 24-7.
06-04-2005, 12:28 AM
Cellcept is also a drug that we have discussed previously on this site. If you like, read some of those posts and see if they help you. If not, let me know and I will get information of the drug for you!!
06-10-2005, 01:53 PM
Hi there. I just wanted to tell you that I did Cellcept before the Cytoxan, and although it will break your piggy bank, I found the medication to be rather harmless. I am a small person, and took the max. 1,000 mg. twice daily. I took it for three years, then had a nasty flair, that required me to go on cytoxan therapy. The docs were pleased, they said although my kidneys were more inflamed, I have very little scar tissue, and they attribute that to the use of Cellcept. I'm sure you do as well, but It was used with small dose prednisone. Just out of curiosity, how did you respond to Cytoxan ? I did not, and now am trying something I have never heard of. Good luck to ya!
07-13-2005, 01:08 PM
Hi - I am also a small person and was on the max dose of 100mg 2 x a day of Cellcept for over a year, and now reduced to 500 mg 2x a day. I think Cellcept is great because I was able to avoid Cytoxan with some pretty severe kidney problems because of it. I have not had any real big side effects that I can identify.
07-28-2005, 10:26 AM
I take cell cept right now, 2000 mg a day,and have been for over year now, in addition t plaquinil and lymphostatb (mab drug for lupus in trial stage).it does help with my kidneys when I do flare, hardley any involvement at all. I was taking Immuran before that, but it ruined my pancrease(sp), so Cell Cept was the alternative to it.no side effects from Cell Cept as of yet. from what my rhuemy says, i could go up in dosage, although I have read that 2000 was the max.keep us posted on how you do with it!!
11-27-2005, 12:45 AM
On the news the other night, the headline was "First New Advancement in the Treatment of Lupus in 30 Years!" I was extremely excited. It was CellCept for kidney involvement. I thought that's not new, you guys have been talking about it forever. :)
11-27-2005, 07:15 AM
Wait a minute...
What do you mean you're on the "max" !,000mg twice daily???
I'm on 1,000mg three times a day...
Should I be worried?
05-19-2006, 02:39 PM
i'm on 3000 mg a day, for 3 months now. I have discoid lupus. and my lupus wasn't cared for much. i wasn't able to find doctors that could help, although they tried their best. also, doc put me on cellcept because my lupus is still active, and complement level is still low. Has anyone came across that situation. Anyone with any information on that, it would be greatly appreciated. thanks.
09-06-2006, 05:34 AM
I began taking CellCept in 2002. I have had no kidney involvement, but agreed to try CellCept as a pilot program through Mayo Clinic in Rochester, MN. I have noticed a marked improvement while on CellCept. :) I have a low tolerance to some medications and have been taking 2 500 mg tabs of CellCept twice daily for 4 years now. I began taking one pill a day for a week, then it was increased to one in the morning and one at night the 2nd week. 3rd week I took two in morning and one at night and by the fourth week I was taking two twice daily. I did have feelings of nausea from taking it but the aches and lupus symptoms were much less. I am also taking 200 mg of plaquenil once daily, Relefan 75 mg as needed up to two times daily, Ultram 50 mg at bedtime.
Not Sure if this helps or not, but I think the CellCept has done wonders for me.
09-22-2006, 05:12 PM
I have been on CellCept for a year a half now and so far it has kept me off Cytoxan. I haven't really had much in the way of side effects. They have suspected it in several things that eventually were proven caused by other things. The only real thing I have had is a really nasty case of Shingles after they doubled my dose to 1000mg/twice a day. If you haven't had the pleasure, let me just tell you Shingles is quite possibly the worst thing ever.
09-24-2006, 02:53 PM
I had Lupus effecting brain, memory and many other organs and Cellcept was wonderful for over 2 and 1/2 years, I got my life back. I'm just now looking for drugs to help control the reoccuring problems and are coming back to the surface.
10-09-2006, 01:54 PM
Just replying back about cellcept. I have been on cellcept every since January 2006. I am fairly new at this but so far I haven't had any swelling, maybe a very little. I had kidney involvment. My kidneys are doing much better. I am taking 2000 mg and 10 mg of prednisone a day. I still have pain but as long as continue to post I will be alright.
10-09-2006, 02:05 PM
If you can keep moving even with pain. Rest when you can but keep moving this will make your life earsier down the road. If you keep your mind busy you can forget about the pain. HONEST THIS WORK!
10-09-2006, 02:39 PM
Margo that's good advice. I was feeling like crap today. I had a dizzy spell that was out of this world. I decided to go to walmart and to the grocery store and I began to feel better. I am still a little nausea, but I will be okay.
10-09-2006, 05:14 PM
for the nausea carry peppermints in your hand bag and to use. It works for morning sickness too. Best wishes for you!
10-10-2006, 06:11 AM
I feel a lot better this morning. I took my cellcept this morning. I didn't have no problem at all. My friend told me to get up slowly and sit on the edge of the bed before I take my medicine and laid back down slowly after taken it. Now I understand what happen to me. I will keep the peppermint close by. Thanks for that recommendation.
10-10-2006, 06:57 AM
I'm glad your better today. Becareful laying down after taking medication if you have heartburn, reflux or any other type burning sensations. Try salten cracker too, they work great for kids too.
Have a blessed day!
~ :) Margo
10-10-2006, 08:17 AM
Thanks for sharing that with me. I noticed that the reflux isn't so bad after taking my cellcept after slowly lying back down.
10-13-2006, 12:08 PM
I have been on CellCept now for over 4 months for Lupus kidney. I went in for my checkup yesterday and my numbers are going down. Now we don't know if they will continue to go down, but we are hoping. I have only had some stomach cramps when I first started the drug, but haven't had andy side effects since. The only thing I don't like is that I ahve to take it on an empty stomach, so I take it either an hour before I eat or 2 hours after I have ate. It's hard to keep that schedule, but the drug is more effective if taken on an empty stomach. I prefer CellCept over Cytoxin any day. More and more research is showing that this drug is working in Lupus patients.
10-13-2006, 01:41 PM
I agree. I have been taken it for about 9 months now. I hated to take it on an empty stomach. I have found out that it is more effective on an empty stomach. I take two 7:00 am in the morning, one at 3:00 and then one 9 at night. I am taking 4 a day. I haven't had any problems. My Dr. wants to up my medicine. My next appt is October 18, we'll see. I hope you get positive results, so far my Dr. is saying that my numbers look good.
10-14-2006, 05:31 PM
:? So its either 2 hrs after a meal OR 1 hr before a meal? Ive been on Cellcept for almost 7 months now. My routine has been taking my CellCept 2 hrs after I eat my breakfast (take my prednisone with breakfast) and wait 1 hour afterwards before I eat anything else. So, I am able to eat something right after I take the CellCept in the AM, or do I wait an hour after to eat a snack? Hmmm? :? So confusing! :?:
10-15-2006, 03:56 PM
:wink: I normally take 2 in the morning. An hour before breakfast. Then eat around 8:00 in the morning because I hve to take my predisone with something to eat. Then I eat Lunch at 12;00 noon, then a 3 o'clock take the cellcept again. Then eat around 5:00 in the afternoon. Then take another cellcept at 9:00 pm. Not sure about snack. I snack often but not to often. I will find out from my Dr. on Wednesday, October 18 and get back to you. I will write that question down.
10-18-2006, 03:15 PM
I talked to my Dr. today and he recommend that I have no snack while taking cellcept. He said it is most effective on an empty stomach. I normally eat dinner around 4:30 or 5:00 and try not to eat no more for the day. If i snack I normally try to snack 1 hour after 9:00. Kind of late but I crave snacks. Just thought I would pass that on.
10-19-2006, 05:38 AM
I will take my Cellcept by 8 am and then I wait an hour before I have anything to eat. After the 1 hour I also take the rest of my meds. I then leave the rest of the day until either 3 or 5pm, depending on when I eat my afternoon meal or snack, and then take my last 1000mg of Cellcept.
12-08-2006, 06:39 AM
i'm gonna start cellcept next week. i just got through cytoxan for six months and it didn't work for my lupus nephritis. i hope cellcept will work for me already.
12-08-2006, 08:23 AM
Hi, quickmelt - I certainly hope the cellcept works for you!
12-08-2006, 05:02 PM
Cellcept is working out great for me. I normally eat snack after my 5:00 dinner. I make sure that I don't eat anything between 7:00 pm and 9:00 pm. 9:00 pm is when I take the cellcept. Then eat snack 10:00 pm.
As a matter of act it's about 6:59 pm. I have 1 mt to down my trial max and then I am done until 10:00 pm tonight. I doubt if I eat another snack. Blessings to you all who are taking cellcept.
peace :!: :BIG:
01-21-2007, 03:48 PM
Hello fellow lupies,
I was diagnosed with Class IV Diffuse (kidney) Nephritis on July 2006 and was prescribed CellCept in combination with 30 mg Prednisone. I noticed significant improvements overall mental and physical after 1 1/2 months of using it. Thank God I my drug benefits combined with my husbands work benefit covers the cost 100% with 2500 mg/day of CellCept it costs over $1800 Cnd!
01-21-2007, 05:06 PM
Well, it's been August since my last appt with the nephrologist. He said my kidneys are doing great..nearly normal now. I urinate more frequently with the cellcept. I am blessed. Next appt is March 8. Every six months is ok for checkup. I am dieting really well. He told me not to much fruit. I can have fruit but not to much. Thought I would pass that one.
01-21-2007, 07:51 PM
Cellcept makes you pee more? I definitely have to pee more now, but it started when my kidneys were bad, so I assumed it's from permanent kidney damage..........I'm almost off all the Cellcept - down to 500 mg a day. I'm hoping to wean completely off by Spring/Summer.
01-22-2007, 12:32 PM
I'm on 3,000 mg of CellCept a day... I have never noticed it making me pee more... Hmmm Weird.