Mycophenolate mofetil and Insomnia: What Users Say

• kta...
• November 19, 2019

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."

• Sme...
• October 17, 2014

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."

• Anonymous
• August 14, 2009

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."

• 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."

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

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!"