Diary Of A Gilenya Pioneer: First Contact With Gilenya!

by Sara on March 11, 2011

Contact With Gilenya

Today I received my first phone call from Gilenya / Novartis, one month and three days after submitting forms to them. Nurses are specifically assigned as case managers to patients and stay with them at least through the process of getting started on the drug. It has taken awhile to finally have contact with Gilenya, but here we are.

The call mostly consisted of me answering questions about my health history and current doctors. How long have I been diagnosed with Multiple Sclerosis, have I had recent vaccinations, etc. We went over the tests I would need to complete before the first dose, and she told me that they were still undergoing a “benefits investigation” to determine if I was eligible to receive the drug.

The nurse was extremely nice and sounded knowledgeable, at least pertinent to the contents of the conversation. I wish I’d had the forethought to prepare any questions I might come up with ahead of time – I had begun to doubt that I would have any direct contact with the company again.

She did tell me a few things that I did not know before this call :

There is a “two week rule” for Gilenya. If a person on Gilenya stops using the drug for two weeks, that person is required to undergo the entire approval process again to restart it – vision tests, EKG, blood tests galore, monitored doses in a doctor’s office, etc…

Although my husband and I don’t intend to have children, it will probably interest anyone who is thinking of starting the drug that if a pregnancy occurs while on Gilenya / Fingolimod there is a registry they want you to join so that they can follow your progress (Ps. You should really try to NOT get pregnant on it as the impact is not yet known).

Any vaccinations must be cleared with a neurologist to ensure that no live virus vaccinations are administered (viral infections usually trigger MS attacks).

Finally, I have permission to contact Gilenya / Novartis and proceed with all the tests necessary to start the drug.

 

How long did it take for you to start an MS therapy?

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