Mycophenolate mofetil User Reviews & Ratings

• lmc...
• Taken for 5 to 10 years
• February 17, 2017

CellCept (mycophenolate mofetil) for Nephrotic Syndrome "I have scleroderma. I have been very fortunate, I have had no side effects. CellCept saved my life. My lungs were being destroyed rapidly by my scleroderma. After I started on CellCept, my lungs have not gotten any worse in over 5 years."

• kta...
• November 19, 2019

CellCept (mycophenolate mofetil) "I've had SLE lupus with nephritis for over 10 years. CellCept is a miracle drug for me. It is the only drug that stops protein loss in my kidneys, it stops my hair loss and aching bones. My skin issues are severe, and CellCept with Plaquenil truly has cleared the constant issues. I used to have rashes and hives nonstop. Four months on this drug, and it cleared up. The side effects are present though: insomnia, extreme fatigue (I can sleep 10 hours if not setting an alarm), digestive problems (I went plant-based to stop the IBS from this drug, and it is now manageable). You will be immunosuppressed - I had an infection that left me in the ICU. You have to take care of your body when you are on this drug. Wash your hands, eat healthy, do not be around sick people. Everyone in your life needs to get the flu shot. Any deep cleaning at the dentist or oral surgery means you have to be on antibiotics because your body is just slow to heal itself on CellCept. The side effects are worth it though."

• Arv...
• October 28, 2009

CellCept (mycophenolate mofetil) for Lupus "I was diagnosed with Systemic Lupus Erythematosus in November of 2006. I've been taking CellCept 2000mg a day since then. It has helped me tremendously! I hadn't experienced any real side effects until recently. I started having anxiety attacks after being put on the generic version of CellCept."

• Anonymous
• October 10, 2009

CellCept (mycophenolate mofetil) for Rheumatoid Arthritis "I have been taking this for about 6 months now and it has greatly reduced the inflammation and pain caused by inflammation of the arthritis. The only complaint I have is that if I take it in the morning as the doctor wants me to (1000mg 2x/day), I am drowsy the whole day."

• Ode...
• Taken for 10 years or more
• March 9, 2020

CellCept (mycophenolate mofetil) "I have been taking 3000 mg a day of CellCept for at least 10 years, and the older I get, the more side effects affect me, or maybe the progression has finally outlasted the effectiveness of the medication. But it's all good; and I'm still alive!! CellCept has given me a better quality of life and is worth the risks."

• SS...
• July 27, 2008

CellCept (mycophenolate mofetil) for Myasthenia Gravis "I was diagnosed with Myasthenia Gravis. It had affected my left eye. I lost control of the eyeball movement, and the eyelid had to be manually opened. I have been taking 2 grams of CellCept daily for six months. I had an immediate positive response to the medication, and the eye function improved 90% within a month. In the following months, eye improvement was slow with small incremental improvements. Now the eyelid is working as expected. The left eyeball is not following the right eye. There are no side effects."

• Sme...
• October 17, 2014

CellCept (mycophenolate mofetil) for Nephrotic Syndrome "I was reluctant to take this medication but essentially had no choice when faced with the possibility of losing my kidneys. It saved my kidneys and also helped greatly with my other SLE symptoms (joint pain, neuropathy, and lung issues to name a few). I also can't tolerate steroids, so luckily CellCept combined with Plaquenil has kept things under control without having to add Prednisone in the mix. I did experience some issues with dizziness, hair loss, and insomnia, but they have tapered off after being on it for a year now; still have problems sleeping at times though and am now experiencing some anxiety. I'm also concerned about the long-term effects ie. lymphoma risks and it's very expensive, but overall it saved my life."

• Pas...
• April 7, 2012

For Myasthenia Gravis "I have had Myasthenia Gravis for 6 years. After a serious crisis and the use of high levels of Prednisone, in 2008 I was put on mycophenolate mofetil. It has helped me tremendously. I'm not totally free from M.G., but I am doing pretty well and think mycophenolate is great. I am a 67-year-old male and am on 1.5 grams per day. It has changed my life for the better."

• Mat...
• February 5, 2009

CellCept (mycophenolate mofetil) for Autoimmune Hepatitis "I was diagnosed with acute hepatitis on January 1, 2006, and was told I needed a liver transplant as soon as possible. I started Imuran shortly thereafter - no response - MELD climbed to 35. I went on CellCept and liver enzymes, etc. returned to normal range. Now on Prednisone and CellCept after a minor enzyme spike - enzymes are now normal. I still have my own liver."

• Anonymous
• August 14, 2009

CellCept (mycophenolate mofetil) for Lupus "Taking 2000 mg a day with mild side effects. Tremors in my hands when I first started and when the dose was increased. Those have since stopped. I also experience some sleep problems, but this could also be due to another medication. My body responded very well to the medication, and my condition has significantly improved in just a few months. Hoping for continued success on the medication."

• WBa...
• September 1, 2009

CellCept (mycophenolate mofetil) for Myasthenia Gravis "I have suffered from MG for 9 years. My original symptoms were mostly ocular with some generalized symptoms. I tested negative for AcR antibodies. I was on a high dose of Prednisone for a long time. When the symptoms came back, I told my neurologist that we had to find something else, and he recommended we try CellCept. It works, but there are side effects (mostly just annoying) and long-term risks."

• Anonymous
• August 14, 2008

CellCept (mycophenolate mofetil) for Myasthenia Gravis "Cellcept works for many with Myasthenia Gravis, but not all. Thank God it has worked for me. I would be taking huge amounts of steroids or some other even more potent immunosuppressants if it was not for Cellcept. Thank you Roche."

• Jen...
• October 26, 2009

CellCept (mycophenolate mofetil) for Lupus "I was diagnosed with lupus on April 20, 2009. I was prescribed CellCept and am still on it. I notice a difference in the joint pain if I haven't taken my dose yet. The disadvantage is the stomach issues it causes. My doctor also prescribed me Imodium. That helps a lot."

• luv...
• Taken for 5 to 10 years
• January 29, 2017

For Myasthenia Gravis "I have been taking Cellcept or Mofetil for I think 10 years. I take no prednisone or mestinon. I am nearly symptom-free. After I had taken Cellcept for about a year, I thought I was cured and quit taking the drug. A few months later, I crashed. It took 6 months to recover. I find Cellcept or generic far more preferable than prednisone. Prednisone makes me crazy and I can't sleep. Cellcept takes a while to work. That is, I think, because it has to get into the marrow of the bones where the B cells make the antibodies that attack neurotransmitters. I am extremely upset that Medicare is trying to take this away. They just sent me a letter denying coverage. A crash from this drug nearly put me in the hospital. The drug studies appear stupid."

• Ver...
• Taken for 1 to 2 years
• February 5, 2017

For Myasthenia Gravis "I was diagnosed with myasthenia gravis ten years ago. Apart from the usual prednisolone and Mestinon, I was eventually prescribed azathioprine, which I had to stop almost immediately because of liver reactions, and then methotrexate up to the highest recommended dosage. However, after 6 years, this appeared to have no effect in reducing the use of prednisolone, which had increased to a daily dosage of 40-50 mg daily, causing severe eye problems in the form of glaucoma and cataracts. At the beginning of 2016, my neurologist consultant put me onto Cellcept. One year later, I am now down to just 5 mg prednisolone daily (continuing to reduce), have stopped Mestinon completely, and am feeling much improved."

• TCO...
• January 3, 2010

For Myasthenia Gravis "I am 70 years old and have suffered from MG for 12 years. I have been on prednisone for that time, 30/10 mg eod. My neurologist said that I had to get off the prednisone and highly touted Cellcept. I was on 2000 mg per day for five months and then started to have severe calf, ankle, and feet swelling, horrible muscle aches, and increased weakness. I really was in misery. I made a special appointment with my neurologist. He told me that it couldn't be the Cellcept that was causing my problems. But he left the room for about five minutes, came back, and said I had to get off Cellcept NOW. I believe he left the room to read up on the unusual but severe side effects. My symptoms are listed in that category."

• 42d...
• February 3, 2016

For Myasthenia Gravis "I was on Imuran for about 20 years for MG. But it blood tests began to show liver damage. I went to 20 mg of prednisone a few months until it was reduced to 10 mg, then 5 mg. I relapsed again and increased to 60 mg by the end of 2014. Began taking 400 mg Celcept while decreasing prednisone. Happily off prednisone in October 2015, with no signs of MG. Prednisone destroys protein, so I was weak and had gained 25 pounds. In January 2016, still on Celcept and back to normal weight. However, I am weak, ache, and sleep little. These are possible side effects of Celcept. And I will be looking for a solution. On a daily basis, it beats the heck out of prednisone."

• Mrs...
• March 21, 2009

CellCept (mycophenolate mofetil) for Myasthenia Gravis "I have been on CellCept for almost 3 years. I started taking it with an IVIG treatment and was taken off the IV to see if I can get by with just the CellCept. My oncologist wants me off it because of the increased risk of lymphoma. I will start trying to get off it in April."

• 3rd...
• Taken for 5 to 10 years
• May 15, 2014

CellCept (mycophenolate mofetil) for Organ Transplant, Rejection Prophylaxis "I have had 3 kidney transplants, and I've been on CellCept 2 different times. The last time I was on CellCept for 7 years, it worked well until I developed CellCept colitis. I was extremely sick and found myself in the hospital. The doctors discontinued CellCept, and now I am on Imuran."

• dam...
• Taken for 6 months to 1 year
• June 6, 2020

CellCept (mycophenolate mofetil) for Organ Transplant, Rejection Prophylaxis "CellCept is easier on your kidneys than Prograf, so that is a plus. It can increase your risk of cancer, which is scary. But if I had the choice, I would be on CellCept instead of Prednisone. It does cause depression and anxiety for some people, and I am one of them. But almost all of the transplant drugs do. Prednisone seems to be the worst of the bunch, though. Weight gain, blood pressure goes up some on this, insomnia, tiredness is a big one. But you have to take something. I don't know about all of the alternatives to this drug, but if it doesn't work, then ask. I will say my biggest problem with the drug has been that I developed the BK virus, which is dangerous, and I had to come off of CellCept to allow my body to fight the virus. So that is something to watch. Take your pills - it is better than rejection or damage. But always ask for alternatives. Pricey, so go with generic!"

• sub...
• Taken for 2 to 5 years
• May 23, 2015

For Myasthenia Gravis "The normal treatment of prednisone and mestinon became ineffective. My neurologist asked for me to try CellCept. I was placed on 1000 mg twice a day. It has been a godsend. My eyes and face cleared up, and my vision improved. This year, I was forced into Obama care, and the government panel has rejected me the use of it. I would be forced to personally pay an extremely high price for it."

• Nek...
• Taken for 1 to 2 years
• January 28, 2022

CellCept (mycophenolate mofetil) "I have autoimmune hemolytic anemia. I am refractory on steroids and rituximab (it worked first time, but not anymore on second onset). Now I am on 2g of CellCept per day. For now, I do not have any major side effects. Just sometimes problems with digestion. I am hoping that it will stay that way because the next line of treatment will be much worse."

• Rex...
• July 13, 2021

For Rheumatoid Arthritis "I have been taking mycophenolate for 3 years. I take 2 x 500 morning and night. I started getting R.A. at age 60 and began destroying my lungs. With a loss of 60% over 3 years, my new doctors placed me on mycophenolate, and after 3 years now I am about the same and hopefully stable."

• tca...
• March 13, 2016

For Myasthenia Gravis "Crashed this time last year, couldn't swallow and lungs failed. ICU 28 days and rehab 14, on 2000 Cellcept with 10/5 prednisone and Mestinon (sp), back to normal after 6 months, and hope to get down to 5 mg daily of prednisone, but wonder how long I can take Cellcept. I have VA but not a lot of MG experience at my VA hospital. Good luck to everyone."

• Anonymous
• October 14, 2009

For Dermatomyositis "Have been treated for atopic dermatomyositis since 1994 with a variety of drugs. Mycophenolate combined with a small dosage of prednisone (3 or 4 mg) has kept skin clear and relatively unaffected for the past 5 years. Muscle enzymes quickly elevate if I cut back from two to one 250 mg capsule per day."