CellCept (mycophenolate mofetil): Qu...

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

There are 134 comments on the About.com story from Nov 24, 2005, titled CellCept (mycophenolate mofetil): Quarter of patients in small.... In it, About.com reports that:

Treating lupus patients suffering from kidney inflammation with CellCept may be more effective in inducing remission than treating them with the standard regimen of intravenous cyclophosphamide .

Join the discussion below, or Read more at About.com.

Lisa

Denver, CO

#21 Mar 18, 2007
I have been on Cellcept for nearly 5 months and have seen no effects or improvement of my Myasthenia Gravis. I am working diligently to get off the prednisone as it does not agree with me AT ALL. I have heard that Cellcept can cause cancer. Is it worth it? Especially since I haven't seen it be worth my while so far.
AVINASH

Vadodara, India

#22 Mar 29, 2007
Maria wrote:
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.
Really cell cept is the good medicene for sle pationet.its a good result and fastest to cure sle.remiission is early and lupus pationt is live good long life.
kay

Carmel, IN

#23 Apr 4, 2007
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.
Kathy,
I have pulmonary fibrosis and have been on cellcept for a little over a year now. So far I have had not any side effects and my breathing tests have been coming back a lot better. I take 2000mg. a day. I also have lupus. Good luck
leslie from Pa

United States

#24 Apr 15, 2007
Kay,
Can you tell me if your Pulmonary Fibrosis
is connected in any way with your Lupus Diagnosis. Is there anything you can tell me or excellent place to be evaluated for lung involvment. I've been seen at the University of Pittsburgh as they are to be excellent at Lung Transplant. I have Lupus,Myasthenia Gravis, Sjrogens,Hoshimotos Thyroiditis, Severe Lung involvement.I'm on a list of meds incc=luding cellcept, prednisone,plaquenil and IVIG. Any info. you might have would be greatly appreciated. Good luck to you.
Paul

Australia

#25 Apr 21, 2007
[I have started it as well can we talk on it
Paul

Australia

#26 Apr 21, 2007
I wish to know more about it
Vanessa Avalo

Chevy Chase, MD

#27 Apr 21, 2007
Hi, My name is Vanessa Avalo. I am 28 year old. I was diagnosed with central nervous system Lupus in September of 2004. Initially I have 7 months of Cytoxan and high doses of steroids. Then my doctor tapered me off the prednisone and put me on Cell Cept 2000 mg a day and 400 mg of Plaquenil and one baby asprin every day. I have nystagmus and I cannot drive. I have not had a flare since 2004. My problem at the moment is that I cannot lose the weight I have gained. I used to be 107 pounds before I was diagnosed with lupus and I currently weigh 137 pounds. I am not happy with how I look. It makes me feel depressed when I look at myself. I have tried everything from juice fasting, bars and shakes, eating only fruits and veggies and staying away from carbs and sugars but I can't lose this weight. Does anyone have any advice?
Dave5177

AOL

#28 Apr 23, 2007
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
Alice, I have had lupus cerebritis for a little over 2 years. Currently I'm taking 2,000mg cellcept per day and soon to be 3,000. One thing I've noticed is that I can play my guitar again, since there is little to no finger swelling any more.
Paul

Australia

#29 Apr 24, 2007
I would like to tlk to anyone with cidp
Maria

Boca Raton, FL

#30 Apr 27, 2007
Vanessa Avalo wrote:
Hi, My name is Vanessa Avalo. I am 28 year old. I was diagnosed with central nervous system Lupus in September of 2004. Initially I have 7 months of Cytoxan and high doses of steroids. Then my doctor tapered me off the prednisone and put me on Cell Cept 2000 mg a day and 400 mg of Plaquenil and one baby asprin every day. I have nystagmus and I cannot drive. I have not had a flare since 2004. My problem at the moment is that I cannot lose the weight I have gained. I used to be 107 pounds before I was diagnosed with lupus and I currently weigh 137 pounds. I am not happy with how I look. It makes me feel depressed when I look at myself. I have tried everything from juice fasting, bars and shakes, eating only fruits and veggies and staying away from carbs and sugars but I can't lose this weight. Does anyone have any advice?
Vanessa, I had the same issue since I took Prednisone for about 12 years straight. Once they finally got me off it, I was at 153 lbs, and I am only 4'11". I started on Weight Watchers program and it has worked incredible. I have not starved or anything, but within a year, I am now at 119 lbs. Even my Nephrologist asked me because all of my labwork came back good. Because WW is a balanced diet, your metabolism and everything else remains good. Try it, it worked for me :)
Nisha

San Diego, CA

#31 May 11, 2007
Maria,
I am in the same situationa s you are. I am off cellcept now and will be trying to concive in anohter 3-4 months if the numbers remain good. I have myosites.
Allison

Dothan, AL

#32 May 16, 2007
Just wanted to say thanks. I am 34 and have been diagnosed with lupus membraneous nephritis since October of last year. I have been on prednisone since and trying to taper off. My protein levels continue to be at a ratio of 1.8-2.3 which cause me to have low protein levels and low albumin levels despite eating high protein bars. My creatinine is okay at .7-.8. My nephrologist can not be very aggresive due to my BP with ARB's and ACE meds. So today we decided it is time to try Cellcept. Your comment eased my mind some. So thanks
Maria wrote:
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.
Jennifer

Winnipeg, Canada

#33 May 18, 2007
I have Lupus Nephritis, and I have found the pain involved debilatating. It seems to stem from nerves in my lower back. When my kidneys went into stage 4, I swelled up to 3 or 4 times my normal size. When they put me on a lasix drip I lost 20 pounds in a week, then the pain started. The weight gain has not come off fully, and my hair is only just starting to grow back. I hate the fat that has developed around my waist from the prednisone. I would love to get rid of it but exercising is so painful. Any thoughts from anyone who has dealt with this and lost their belly fat I would love to hear from.
Jennifer

Winnipeg, Canada

#34 May 18, 2007
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??
Hi
I have had the ssme problems, hair loss, prednisone weight gain, the methotrexate caused my hair loss, I didn't eat or sleep for days at a time. I had blood transfusions too, not fun. For your hair loss, I would suggest careful monitoring of your meds and not to switch them too quickly as this shocks the system. Here in Canada, we have cancer clinics with a ward called the guardian angel room. They help by doing workshops to assist in your appearance. They gave me a kit that included a serum that you rub into your scalp that promotes hair regrowth and slows down the hair loss. I had a huge problem with skin itching and rashes, i tried everything on the market. What works best for me is the Aveeno lavender cream. It soothes, calms the itch, and the smell relaxes me when I can't sleep. My current problem is prednisone weight gain around my waist. I can't get rid of it, and exercising is still very painful, which sucks because when zi flared I was an aerobics teacher, so I was healthy and fit! Now, not so much. Anything you could recommend in return for belly fat loss?
gendo

Oslo, Norway

#35 Jun 5, 2007
dint see anyone mention what dosage of cellcept they are using.I`m using 1500mg/day
Joyce

Venice, FL

#36 Jun 13, 2007
I have had scleroderma since 2000 and had to start on Cellcept 6 days ago (June 8, 2007)due to lung involvement. I feel that you have to decide what is best for you. Researched about all the medications and side affects. I have found that this medication has the least harmful side affects than most. I have not had any reactions to it and I have many drug allergies. I know that I am in the early stages of taking it but so far, so good. I take one 500 mg. tablet twice a day for two weeks, then two tablets twice a day. After blood tests, I might be increased. Don't be affraid, do the research. I just went into Search on the computer and typed in Cellcept. Another good web site for people with Scleroderma is sclero.org where you will find answers to a lot of questions about the disease. Is your Dr. a rheumatologist? If not, I recommend that you find a good one. I was told by mine, that Cellcept was the safest and had the least side affects of all. I hope I helped.
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.
jackie

Woombye, Australia

#37 Jun 19, 2007
Vanessa Avalo wrote:
Hi, My name is Vanessa Avalo. I am 28 year old. I was diagnosed with central nervous system Lupus in September of 2004. Initially I have 7 months of Cytoxan and high doses of steroids. Then my doctor tapered me off the prednisone and put me on Cell Cept 2000 mg a day and 400 mg of Plaquenil and one baby asprin every day. I have nystagmus and I cannot drive. I have not had a flare since 2004. My problem at the moment is that I cannot lose the weight I have gained. I used to be 107 pounds before I was diagnosed with lupus and I currently weigh 137 pounds. I am not happy with how I look. It makes me feel depressed when I look at myself. I have tried everything from juice fasting, bars and shakes, eating only fruits and veggies and staying away from carbs and sugars but I can't lose this weight. Does anyone have any advice?
Hi Vanessa,

I also have lupus and central nervous involment i am taking 2000mg of cellcept and 15predisone i also have put alot of weight on and i feel terrably depressed about this also. I would love to be a support person for you please write to me at [email protected]
Joni

Salem, MA

#38 Jun 22, 2007
Jennifer wrote:
I have Lupus Nephritis, and I have found the pain involved debilatating. It seems to stem from nerves in my lower back. When my kidneys went into stage 4, I swelled up to 3 or 4 times my normal size. When they put me on a lasix drip I lost 20 pounds in a week, then the pain started. The weight gain has not come off fully, and my hair is only just starting to grow back. I hate the fat that has developed around my waist from the prednisone. I would love to get rid of it but exercising is so painful. Any thoughts from anyone who has dealt with this and lost their belly fat I would love to hear from.
I have had lupus nephritis for 11 years. 11 years ago I was on prednisone high doses for 8 years and cytoxan for 2 and half years. My kidney's have done well I was a stage 1V. I gained 60 lbs. alot of belly fat and just plain fat all over my body. I felt so horrible I cannot even write it down. I finally weened off prednisone 3 years ago and I will die before I ever go on that stuff again. Now the nephritis is back and I just started cellcept. I was very weary about taking this drug but I do not feel like I have a choice if I want to live. This is such a horrible illnes especially with the kidney involvement. I could live better if it was just the lupus and no organ involvement. But as far as getting rid of the fat caused by 7 years of high dose prednisone I am just starting to be able to do some long walk. I walk 2 miles every other day and have incorporated a couple of hills in my walk. It is not easy but I just walk through the pain so to speak, that is what you have to do. You know the saying no pain, no gain, well it's true. But I do find that my body is reshaping and I am losing that belly fat. I also have to watch my food. That is about all I can say about getting rid of all that belly fat and all the other fat. It's just not easy.
Shelbi

Strawn, TX

#39 Jun 22, 2007
I was diagnosed with HSP about three months ago. I began taking prednisone about two months ago, however I have just tappered off of it and am going to begin cellcept tomorrow. While on the prednisone I gained quite a bit of weight. At my last Dr. visit I felt that my Dr. was saying the cellcept would make you loose weight. I am 13 years old and have gained about 20 lbs. in two months. Will this make me loose weight?
Maria

Boca Raton, FL

#40 Jun 27, 2007
Nisha wrote:
Maria,
I am in the same situationa s you are. I am off cellcept now and will be trying to concive in anohter 3-4 months if the numbers remain good. I have myosites.
Good Luck Nisha :) I hope I can get to that point as well.

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