Mycophenolate mofetil for Myasthenia Gravis User Reviews
Brand names: CellCept, Myhibbin
Mycophenolate mofetil has an average rating of 7.7 out of 10 from a total of 15 reviews for the off-label treatment of Myasthenia Gravis. 67% of reviewers reported a positive experience, while 13% reported a negative experience.
Reviews for Mycophenolate mofetil
- Pasad...
- April 7, 2012
"I have had Myasthenia Gravis for 6 years. After a serious crisis and use of high levels of Prednisone. In 2008 I was put on mycophenolate mofetil. It has helped me tremendously. Not totally free from M.G. but I am pretty good and think Mycophenolate is great. I am male 67 and am on 1.5 grams per day. It has changed my life for the good."
- WBart
- September 1, 2009
CellCept (mycophenolate mofetil) "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 high dose Prednisone for a long time. When the symptoms came back, I told my Neuroogist 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) "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 immunosuppressents if it was not for Cellcept. Thank you Roche."
- luvst...
- Taken for 5 to 10 years
- January 29, 2017
"I have been taking Cellcept or Mofetil for I think 10 years. I take no Prednesone or Mestinone. 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 I crashed. It took 6 months to recover. I find Cellcept or generic far more preferable than Prednisone. Prednisone makes me crazy and 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"
Are you taking this medicine?
- Very...
- Taken for 1 to 2 years
- February 5, 2017
"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 40-50mg daily, causing severe eye problems in the form of glaucoma and cataracts, and at the beginning of 2016 my neurologist consultant put me onto Cellcept. One year later I am now down to just 5mg prednisolone daily (continuing to reduce) have stopped Mestinon completely and am feeling much improved."
- TCO
- January 3, 2010
"I am 70 years old and have suffered from MG for 12 years. I have been on predisone for that time 30/10mg eod. My neurologist said that I had to get off the prednisone and highly touted Cellcept. I was on 2000mg 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."
- 42dubbs
- February 3, 2016
"I was on Imuran for about 20 years for MG. but it blood tests begin 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 400MG Celcept while decreasing prednisone. Happily off prednisone October 2015, with no signs of MG. Prednisone destroys protein so I was weak and had gained 25 pounds. January 2016, still on cellcept and back to normal weight. However am weak, ache, and sleep little. These are possible side affects of cellcept. And will be looking for a solution. On a daily basis it beats the heck out of prednisone."
- Mrs...
- March 21, 2009
CellCept (mycophenolate mofetil) "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 lymphmona. I will start trying to get off it in April."
- subsi...
- Taken for 2 to 5 years
- May 23, 2015
"The normal treatment of Prednisone & Mestinon became ineffective. My neurologist asked for me to try CellCept. I was placed on 1000 mg twice a day. It has been a God send. 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."
- tcadle
- March 13, 2016
"crashed this time last year couldn't swallow and lungs failed. ICU 28 days and rehab 14 on 2000 cellcept with 10/5 predisone and mestanon(sp) back to normal after 6 months and hope to get down to 5 mg daily of predisone 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."
- Hughes
- Taken for 10 years or more
- January 12, 2022
"Have had MG since 2000 and until I was given cellcept after about 2 years, I did not improve much. I started at 2000 mg and gradually reduced over 15 years to 250 mg. I am now in my 80s and doing fairly well. I think it saved my life. My Dr says there is still mg in my system from reading my blood test so am staying on the mycophenolaye."
- DiegoM
- Taken for 1 to 6 months
- April 29, 2022
"Unfortunately I did not have a good experience with mycophenolate. I had frequent bouts of watery diarrhea and constant nausea. I lost about 10 pounds. I took 500mg at night. I was also taking Mestinon. I only took it for 5 weeks but just could not tolerate the side effects. I was taking it because I had neck weakness and realize I didn’t take it long enough to show any results but could not see myself experiencing diarrhea and constant nausea for months."
- Anonymous
- December 9, 2008
CellCept (mycophenolate mofetil) "Taking Cellcept for my Myasthenia Gravis has allowed me to live a symptom free, normal life."
- Anonymous
- April 12, 2008
CellCept (mycophenolate mofetil) "I have Myasthenia Gravis and I have been taking Cellcept for two years. It saved my life."
- RQr
- June 11, 2015
"very expensive once you hit the donut hole..but it does help"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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CellCept (mycophenolate mofetil) "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 sides effects."