CellCept (mycophenolate mofetil): Quarter of patients in small...

I have a questin for you i just stared to take cellcept what are the side affects i am warry that im going to Again wait again i lost 100pound and with lupus is very hard to loose it whould i again wait thank you for your time.

I have MS and taking Copaxone. It doesnt seem to be working effectively. My doctor wants to try a combination of the drug Cellcept and Copaxone for my therapy. Has anyone tried it with Copaxone? I would appreciate any response. Thank you.

Cecilia wrote:

I have a questin for you i just stared to take cellcept what are the side affects i am warry that im going to Again wait again i lost 100pound and with lupus is very hard to loose it whould i again wait thank you for your time.

I have been taking cell cept for over a year now. At first i had a real hard time taking it and used to get nausea and have diahrea. Now I am so use to it that I do not have any side effects. It will get better. The steriods are what typically makes you gain weight. I gained 60 pounds in water due to my kindeys not working so good then started taking cell cept. That was a year ago and now I am skinner than I was before my flare. Hang in there!

I have lupus cerebritis and have been on steroids for 15 yrs, as well as many other meds. My dr is looking at Cellcept as a next step for me. I don't have kidney involvement at this point. Do any of you out there have experience with cerebritis and Cellcept? thanks

Martha wrote:

I have MS and taking Copaxone. It doesnt seem to be working effectively. My doctor wants to try a combination of the drug Cellcept and Copaxone for my therapy. Has anyone tried it with Copaxone? I would appreciate any response. Thank you.

Martha I know this is late hope you read, I have mysthenia gravis for 25 years taken cellcept for 10 years was dx a year ago with MS now Copaxone for 8 mo doing great no SE with either,beside the skin irritation

I just started cellcept because i am being treated for cidp. I dont know what i am supposed to feel but could all of these hot flashes come from it? How long can I stay on this drug? and oh boy, am i constipated. Sorry to be so graphic

I have been diagnosed with Lupus and have been taking Cellcept, 2 grams/daily for about 1 1/2 years. I never thought I would feel close to normal ever again. I noticed a positive difference within one week. The side effects are minimal compared to the symptoms. It worked for me. The drug is expensive, patent should expire May 3,2009. I am thankful I have insurance, however, there are programs for those who are caught in the middle. If you are scared to take this, don't be, it helped me,I hope it helps you.

I have been taking Cell Cept for approx. 3 months for Lupus Nephritis. However, there have been no improvement with the symptoms, specifically with the swelling of my feet. Am I being too impatient - when can I expect any relief? I am also on cortisone - is this perhaps why the swelling is not going down?

Kelly wrote:

I just started cellcept because i am being treated for cidp. I dont know what i am supposed to feel but could all of these hot flashes come from it? How long can I stay on this drug? and oh boy, am i constipated. Sorry to be so graphic

Hi Kelly - My son has been on Cellcept for 10 weeks now. He is also taking prednisone but it is tapering. The Cellcept alone is not what constipates my son. It is all the meds he takes for CIDP including vicadine. Make sure you eat lots of vegetables and fruits. He takes a stool softner three times a day. Also, he uses Ducalax - 1 tablet every fourth or fifth day. He does feel warm most of the time and does complain about hot flashes periodically. I hope this helps - good luck to you.

I am 29 yrs old and I have been diagnosed with Lupus Nephritis for 15 years and I was on Prednisone for 13 of them..I had a few flares, but my protein levles continued to increase. I went thru Imuran, Cytoxan treatments, etc.. to no help. 2 yrs ago, my doctor decided to change me to Cellcept and I cannot explain what an improvement it has been. I have been off Prednisone for 10 months and I have never felt so good as now. My protein levels have lowered to a number that I had not seen in the past 15 years. I hope everything continues this good. Please don't be afraid to take Cellcept. It has really changed my life.

Alice wrote:

I have lupus cerebritis and have been on steroids for 15 yrs, as well as many other meds. My dr is looking at Cellcept as a next step for me. I don't have kidney involvement at this point. Do any of you out there have experience with cerebritis and Cellcept? thanks

Hi Alice,
My daughter was diagnosed with Lupus and one on her flares effected her central nervous system. I guess the terminology is cerebritis??? She also does not have kidney involvement and has been on Cellcept because of it. She now gets great marks in school and not as clumsy, but she feels nausious all the time and even after 3 years and playing the doses.

My sister-in-law was diagnosed with scleroderma about 5 years ago. Up until now,it has most affected her skin and esophagus, but recent lung studies have shown pulmonary fibrosis and the doctor is wanting to put her on CellCept. He says there are a lot of bad side-effects, but didn't really tell much more. Has anyone out there been put on CellCept for scleroderma? We could really use some information.

Michelle wrote:

I have been taking Cell Cept for approx. 3 months for Lupus Nephritis. However, there have been no improvement with the symptoms, specifically with the swelling of my feet. Am I being too impatient - when can I expect any relief? I am also on cortisone - is this perhaps why the swelling is not going down?

Hello Michelle,I have Lupus Nephritis and have had the same issues that you are dealing with.I am a stylist who stood on swollen feet,ankles and lower legs for years until my rheumatologist increased my cellcept to 2,000mg a day and plaquenil 400mg daily.I am doing much better with less protein in urine and less swelling in mentioned areas and I seem to be in remission as I only have mild pain in fingers and hands when weather changes dramatically.

JUDY wrote:

I HAVE BEEN TAKING CELL-CEPT FOR 5 YEARS FOR
DERMATMOYOSITIS-ALSO PREDNISONE THAT I CANNOT GET OFF OF EVERY TIME WE TRY MY BLOOD TESTS GO CRAZY AND I FEEL WORSE. I WAS ALSO TAKING PLAQUENEL BUT WE STOPPED IT DUE TO CONSTANT DIAHHREA.I HAVE BEEN ON METHOTREATE BUT HAD TO STOP ALLERGIC TO. I HAVE HAD CELL TRANSFUSIONS CAN'T REMEMBER THE NAME BUT WAS VERY $$$. I STILL CANNOT GET RID OF THE ITCH AND RASH AND ALSO HAVE LOST HAIR IN ALL THIS MESS. ANY SUGGESTIONS??

Hello Judy,When I was first diagnosed with lupus I had a lot of itching and scalp rashes as well as massive hairloss.My doctor prescribed Triamcinolone 0.1% lotion 60ml.I applied it to the itchy areas in the scalp twice daily as needed.This helped me tremendously.I was able to apply that topical lotion instead of constantly scratching and irritating the rash further and that allowed my scalp to heal and get healthy enough to regrow my hair.I am proud to say that my hair is now longer and thicker than it's ever been.Praise God!!!!!!!

Hello everyone I have lupus Nephritis and since I'm stage three for kidney disease and have been on cellcept 2250 mg I know being on this long term can cause cancer since my levels have been doing good my kidney doctor wants to try and take me off because, of the cancer side effect. But other then that I haven't had any side affects at all. Has anyone been on this medicine and taken off and the lupus flared up again?

sharon wrote:

Hello everyone I have lupus Nephritis and since I'm stage three for kidney disease and have been on cellcept 2250 mg I know being on this long term can cause cancer since my levels have been doing good my kidney doctor wants to try and take me off because, of the cancer side effect. But other then that I haven't had any side affects at all. Has anyone been on this medicine and taken off and the lupus flared up again?

Sharon, I had the same question. My doctor plans to take me off Cellcept if my remission continues. He said that once I am off Cellcept for 6 months, and the numbers continue to be good, I can try to conceive for a baby. Anyone has any experience of Lupus and pregancy?

Cecilia wrote:

I have a questin for you i just stared to take cellcept what are the side affects i am warry that im going to Again wait again i lost 100pound and with lupus is very hard to loose it whould i again wait thank you for your time.

I have been diagnosed since May 2003, I have finished up one year of Cellcept with NO side effects good luck.

I have had SLE for 3 years....a year ago I started Cell Cept with no side effects and no weight gain, the weight gain is from prednisone.

I started taking Cellcept for scleroderma-Went on for 3 weeks-felt really sick, weak. Don't know if it was the medication or the disease. Went off for 2 weeks and felt great. Well, started back on it this week-hopefully I won't feel like that again.

Kathy wrote:

My sister-in-law was diagnosed
with scleroderma about 5 years ago. Up until now,it has most affected her skin and esophagus, but recent lung studies have shown pulmonary fibrosis and the doctor is wanting to put her on CellCept. He says there are a lot of bad side-effects, but didn't really tell much more. Has anyone out there been put on CellCept for scleroderma? We could really use some information.