The Basics on Taking Gilenya for Multiple Sclerosis

Common Questions on Side Effects, Monitoring, and Insurance Answered

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Gilenya (fingolimod) is the first oral disease-modifying therapy for multiple sclerosis. This unique medication works by binding to and trapping certain immune cells in a person's lymph nodes. This prevents the immune cells from traveling to the brain and spinal cord and attacking myelin and nerve fibers. 

What are the Side Effects of Gilenya?

Gilenya is a tablet taken one time per day, with or without food.  Some common side effects include:

  • headache
  • influenza
  • diarrhea
  • back pain
  • cough
  • sinusitis
  • abdominal pain
  • extremity pain
  • abnormal liver tests

There are also some more serious effects that can occur with Gilenya like a slowed heart rate, and problems with your liver, lungs, eyes, and brain. Also, while taking Gilenya, you may be at an increased risk of infection, including herpes viral infections and a fungus called cryptococcal infection.

The good news is that you are not deciding by yourself whether or not to take Gilenya -- you are deciding with your neurologist and your loved ones. This way you are weighing the risks and benefits of taking Gilenya as a team -- and by keeping in close touch with your doctor, you can address any side effects right away if they occur. 

Monitoring on Gilenya

While the administration of Gilenya is easier than the injectable disease-modifying therapies, the monitoring requirements while taking this drug should be taken into account.

Because one of the potential side effects of Gilenya is heart problems, you must take your first dose of Gilenya in a hospital setting, so you can be closely monitored and treated if there is a problem. Your will also have your blood pressure and heart rate monitored constantly for at least 6 hours after your first dose.

In addition, you will need to have a blood cell test, liver function blood test, eye exam, and a skin exam before and/or during treatment with Gilenya. Lung function tests may also be ordered if you experience any breathing problems while on Gilenya. In addition, before you start Gilyena, your immunity to chicken pox will be checked -- the good news is this is a simple blood test. 

For Women in Childbearing Years

Gilenya is a "pregnancy category C" medication, meaning that it caused some fetal harm in animal studies, but the effect in humans is unknown. So if you are thinking of becoming pregnant, be sure to tell your doctor -- it's important to know that Gilenya should be stopped for at least two months before trying to conceive. 

Who Cannot Take Gilyena?

Gilenya should not be used if you recently experienced a certain heart condition, like severe heart failure, a heart attack, stroke, or chest pain. If you have a history of certain heart rhythm disturbances and/or are taking an antiarrhythmic, you may also not be able to take Gilenya.  

This all being said, it's a good idea to discuss any heart-related problems with your doctor. You should also tell your doctor if you have a history of fainting, diabetes, liver or kidney disease, asthma or other breathing disorder, or an infection.

Can I Get Vaccines While on Gilenya?

As Gilenya is an immunosuppressant, you should not receive a "live" vaccine while using Gilenya and for two months after stopping Gilenya, unless your doctor approves it.

For example, if you are going for your annual flu shot, opt for the inactivated influenza vaccine (flu shot) and not the "live" attenuated influenza vaccine (nasal spray).

Will My Insurance Cover Gilenya?

Cost is a certainly a source of stress for most of us with MS, but here are some resources to help you. To determine if Gilenya is covered under your insurance program, or if you qualify for financial assistance to obtain your Gilenya, you can contact Novartis' patient assistance program, "The Gilenya GO Program" at 1-800-GILENYA (1-800-445-3692), where you will speak to a "navigator" about your situation.

"I'm Not Sure if Gilenya is Right for Me."

Starting a new medication for your MS is a difficult decision and one that should be carefully discussed with your doctor and loved ones. While a number of people with MS are anxious to take an oral medication — as opposed to injecting themselves with more traditional disease-modifying therapies — be aware some neurologists still prefer to wait until their patients are "failing" one their current meds before switching them to Gilenya.

DISCLAIMER: The information in this site is for educational purposes only. It should not be used as a substitute for personal care by a licensed physician. Please see your doctor for diagnosis and treatment of any concerning symptoms or medical condition.

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