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tropically
11-07-2003, 02:16 PM
Anyone on cellcept and has anyone experienced any problems such as not working.

please help[/u]

annette
03-06-2004, 11:24 AM
Hello,how long have you been taking cellcept?my docter wants me to go on cellcept to. I have had S.L.E for 15years and taking prednisone and plaquneil. But that not enough to keep my lupus in remission.so my nephrologist recomemded cellcept.

Missy
03-08-2004, 08:29 PM
Hello! Yes, I've been on Cellcept for 2 1/2 months now. My bloodwork from last month (after I had been on it for 6 weeks) showed marked improvement, but my latest (today) didn't show any improvement since last month. The side effects haven't been too bad, though. Let me know if I can be of any help.

Missy

annette
03-09-2004, 03:50 PM
Do you have Lupusnephritis to? why are you taking cellcept? Thanks!!

Missy
03-11-2004, 10:03 AM
Yup - I have Lupus nephritis, too. That's why I'm on the Cellcept ( and Prednisone). I don't think I 've had too many side effects from the Cellcept - more from the Prednisone. It's hard to tell, though, when you start everything around the same time.

annette
03-14-2004, 12:13 PM
Hey Missy,
How many milligrams of predinisone and cellcept are you on? did your docter cut down on the milligrams of the prednisone because now that you are on cellcept?

Missy
03-16-2004, 11:02 AM
I'm on 2000 mg of Cellcept every day and went down form 30 to 20 mg of Prednisone. But my sed rate didn't go down at all after reducing the Prednisone, so I have to stay on the 20 mg for now. I was hoping to get to go down more. :(

Missy

tigerfan
03-16-2004, 03:34 PM
I, too, am doing 2000 mg of Cellcept a day. Today is my first day.

Has anyone had any side effects from the Cellcept. If so, what were they? I heard some people had gastrointestinal problems. I'm a bit scared of taking this because I have such a sensitive stomach. :(

tropically
03-17-2004, 08:12 AM
My wife is on cellcept. She is taking 2000mg a day. However her prednisone went down from 20 mg to 1mg every alternate day.
We are waiting to get off the prednisone in a couple of weeks.\
And yes she does have lupus nephritis.

hope this helps

Missy
03-17-2004, 10:56 AM
I take 1000 mg in am & 1000 mg in pm, but when I first started, my Rheumy said it was ok to ease myself on, so I started with 500 mg a day, then 500 mg in am & pm, etc. Supposedly, you are supposed to take it on an empty stomach for optimal absorption, so I do get a little upset tummy for the hour I take it before I eat. Mine says to take it 1 hour before eating or 2-3 hours after last eaten. I have a sensitive stomach as well, but find that eating smaller, more frequent meals helps my stomach not be upset. Good luck, Tigerfan!

tropically
03-18-2004, 08:23 AM
thats odd, cause my wife takes it with food. The rhuemy said to take it after the meal. Must ask again.

annette
03-23-2004, 04:17 PM
I started taking cellcept on Thursday March 18, I was taking 250mg in mouring and 250 mg at night along with other drugs.But right after 2hrs of taking the drug my STOMACH FELT HORRIBLE and I felt Nausaas along with geting Diarrhea everday. What do you guys take for upset stomach, I tried taking the drug with empty stomach,I've tried taking it with full stomach nothing works.So I called my docter this past Monday and complained,so he dicontinued the medication until I get a cat scan of my stomach.But I don't understand how anybody can handle 1000mg of Cellcept in the mouring and 1000mg at night my stomach can't even handle 500mg a day. And the sad part about this is I was only concerned about the long term effects (Lymphoma) never imagined i would have to suffer this much. And my kidneys need this drug despertly too!! Please any Suggestions!!!!!! Thanks

Missy
03-30-2004, 10:45 AM
Annette - so sorry to hear that the Cellcept didn't agree with you at all. My Rheumy said taking it on an empty stomach enhances absorption. But, I do get nauseous between meals sometimes and after I take the medicine, before I eat. I notice that if I don't keep something on my stomach, I feel nausea. Yesterday, I did get diarrhea for the first time. I'm hoping the side effects are not cumulative, like Prednisone, where it gets worse as time goes on. I, also, was worried about the long-term effects (Lymphoma), but my Rheumy helped put it in perspective for me. He said I really needed this drug for my kidneys to turn around, and that, hopefully, I would only be on it around 6 months or so. Plus, he said most people that get Lymphoma are transplant recipients that have been on Cellcept for years and years (like ten or twenty). He also brought up the point that we don't know what effect having someone else's organ in your body plays into getting Lymphoma. I thought those were good points, and helped me feel better about taking Cellcept. Plus, I don't know that I had another option.

Annettte, I sure hope they figure something out either with the Cellcept or something else. Good luck and keep us updated.

Missy

annette
03-30-2004, 04:55 PM
Thanks for your reply Missy,
I just found out from another friend that she got an ulcer while on cellcept,so she advised me to ask my docter if he can prescribe me Carafate which is an acid reducer.So I will definitly ask my docter about this drug. Take care!!

Love,
Annette :D

CK
07-23-2004, 05:23 AM
I just started cellcept on Monday after just finishing 6 months of chemo. I am on 2 mg pred every other day. I appreciate any positive info on lupus nephritus treatment. I need some happy outcomes!

annette
07-25-2004, 09:46 PM
Hello,
I have been on cellcept 1000mg for about 5 months now, I still get stomach problems now and then but i guess you kinda get use to it. I hope everything works out for you and i will pray for you.

Love-Annette

Missy
07-28-2004, 11:54 PM
I'm still on 200 mg/day of Cellcept 8 months later, and will probably be on it (at some dose) for at least another 1-2 years per my kidney doctor. But, of course, no long term planning is really possible, because who knows what the next set of bloodwork could indicate. I seem to be doing just fine on it - -still on Prednisone, too - had to go back up to 30 mg/day, now down to 20 again. I'm hoping to go to 10 in August. I had a scare in June, and thought I'd have to do Cytoxan, but a kidney biopsy showed that most of my problems are chronic, so that's actually better than a higher amount of active disease. Anyhow, he also put me on Prilosec to prevent stomach problems.

Good luck and hope it works out for you!

Missy

Abbygale
06-12-2005, 08:56 PM
Howdy,

I'm brand new to the site.. but I have been on cellcept for 8 months. I haven't had any side effects in general.. however for the past month I have noticed I'm having frequent bad headaches. Has anyone else noticed this? :roll:

My kidney function has improved dramatically since I went on it... I've gone from 4 grams + to > 1 gram of protein in my urine.. yay! :wink:


Abby

Chocolate
07-10-2005, 08:08 PM
I have been on cellcept for 3 1/2 years and have had SLE for 21 yrs. I have recently had a chest CT that showed enlarged and multiple lymphnodes. I am waiting for the radiologists to compare this to a previous CT to see if they have grown or multiplied. I am terrified to say the least.

I live in Granger, In and the rheumy's here are not good enough to say the least. I was seeing one at U of Chicago hospital but we had some differences. I am between doctors right now and am waiting for a new one to get certified by insurance companies. Hope I can wait.

Cellcept has been very good for me in the short term but the fear that I feel right now makes it not so worth it.

Wish I could have more wonderful things to say for long term use. :shock:

Karen

Chocolate
07-10-2005, 08:10 PM
I have been on cellcept for 3 1/2 years and have had SLE for 21 yrs. I have recently had a chest CT that showed enlarged and multiple lymphnodes. I am waiting for the radiologists to compare this to a previous CT to see if they have grown or multiplied. I am terrified to say the least.

I live in Granger, In and the rheumy's here are not good enough to say the least. I was seeing one at U of Chicago hospital but we had some differences. I am between doctors right now and am waiting for a new one to get certified by insurance companies. Hope I can wait.

Cellcept has been very good for me in the short term but the fear that I feel right now makes it not so worth it.

Wish I could have more wonderful things to say for long term use. :shock:

Karen

dandoon_88
08-14-2005, 10:52 AM
hi,
i have lupus nephritis, was dx'd last yr and have since been on Prednisone and Cellcept. I haven't had bas side effects, except for weight gain and Cushing's syndrome. I take 1500 mg of Cellcept per day and my Prednisone dose has been reduced from 60 mg to 5 mg per day currently.
I haven't done my blood tests yet since three months, but I feel okay.
Good luck to you all!!