What to Expect When Taking CellCept (Mycophenolate)
Last updated: April 2023
Editor's Note: CellCept is used off-label to treat myasthenia gravis. Talk to your doctor about the risks and benefits of this treatment.
CellCept (mycophenolate mofetil) is a drug for people with immune disorders. It is in a class of drugs called immunomodulating medications that are often used to treat myasthenia gravis (MG). You can learn more about it in the article, CellCept and Myasthenia Gravis.
This article outlines what you may expect if you and your doctor decide this treatment is right for you.
How fast will it work
It is normal not to see a response or any improvement from treatment for the first 6-12 months.1 For that reason, It may be helpful to keep a diary of how you feel.
Sometimes, the small day-to-day changes are not noticeable, but over a period of a year, could become more apparent. The maximum benefit of CellCept is not seen until 1-2 years after starting therapy.1
How do I take it?
Most people who take CellCept or generics will be on the capsule formulation. CellCept can be taken with or without food.2 If a dose is missed, take it as soon as you remember and then continue with your regular schedule. However, never double the dose to make up for a missed dose.
Possible side effects
Very few drugs come without any side effects. By knowing the potential adverse effects, you can set up a plan with your doctor on how to handle them if they arise.
The side effects below are not a comprehensive list, but outline those that are most frequent. Talk to your doctor if you experience any changes that concern you during treatment.
Possible side effects include:3Heart- CellCept increases the risk of high blood pressure and rapid heart rate. It can also cause swelling of the ankles. In some people, it can cause low blood pressure, causing dizziness, and potentially falls upon standing.
Brain- People report more pain, headache, and confusion on this drug. Some people experience trouble sleeping and/or depression and anxiety.
Skin- Skin rash is the most common skin manifestation; however, some people may also experience skin infections. Acne is another potential side effect.
Endocrine- Almost 50 percent of people experience high blood sugar taking CellCept. Other side effects include high cholesterol levels, electrolyte imbalances (such as magnesium, potassium, and calcium). Your doctor will closely monitor for these side effects through periodic blood tests.
Stomach- Nausea and abdominal pain may occur in up to 1/3 of people. Some people may experience diarrhea while others perhaps constipation, although diarrhea is more common. Stomach ulcers and weight loss may also occur.
Urinary- Because this medication increases the risk of infections, it can increase the risk for urinary tract infections.
Kidney- CellCept can impact your kidney function. Your doctor will closely monitor your kidneys while on treatment.
Respiration- CellCept can cause trouble breathing and/or cough.
Connecting with others
This list can be quite overwhelming to read through, especially for someone about to start therapy. However, not everyone will experience these side effects.
Connecting with people who are also on the medication, for example through our Myasthenia-Gravis.com community, can help alleviate some nerves before starting therapy.
Some other factors to consider before starting CellCept include:
Donating blood– People on CellCept should not donate blood during treatment. It is recommended to wait at least 6 weeks after the last dose before doing so.3Stopping the drug abruptly– With some drugs, stopping a drug abruptly doesn’t result in serious side effects. However, with CellCept, discontinuing it too fast, without a supervised tapering schedule from your doctor, – can result in an MG exacerbation or myasthenic crisis. Be sure to always follow your doctor’s recommendation on discontinuing any of your MG medications.5
Are you currently on CellCept or generics to treat your MG? Share your experiences below!
How often do you experience MG exacerbations/flares?