How long does Gilenya stay in your system?

11/29/2017

Question:
My doctor took me off Gilenya because of low WBC and below even the normal low lymphocytes. I have been off about 3 weeks I have noticed some of the symptoms I had before I started Gilenya have come back like the chest hug and trigeminal neuralgia stabbing facial pains. We did have a cooling off here in the weather I could relate it to that but thought I would ask. Is the Gilenya still in my system? How long does Gilenya stay in your system? I have follow up lab work to do in a few weeks.

Answer:
Gilenya is generally out of your system completely within a month; in fact you need to go through another first dose, 6 hour observation if you are off Gilenya for more than 2 weeks. So your report of a return of symptoms within 3 weeks of stopping Gilenya is very possible.

Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Mrs K Marriott

10/5/2019 07:30:39 am

My son was took off of Gilenya this March the 13th and on April 1st he passed away two weeks after he was took off Gilenya he had a massive relapse then two weeks after he Romania and passed away April 1st contacted his specialists and they asked me what did I want them to do about it they didn't understand why my son has passed away I think if they'd read your report they would have done something about it but they did not keep an eye on it they just took him off his medication and I had to watch my son passed away my son was called Russell Wilkes and the specialist was at Gloucester Hospital doctor Martin and a Gentleman called Richard Warner and the nurse called Rebecca Kit Kat they told me they would keep him comfortable I think I knew that he would die I have put in a complaint about the hospital but I didn't know all about this until this week ek4 Dad let you know no that's within six weeks and then taking him my son off of the medication he had passed away

Revere Kinkel

10/14/2019 06:52:55 am

We are so sorry to hear about your loss. It is very rare for individuals to succumb from an MS relapse, but it can happen. More often people with MS die as a consequence of severe longstanding disease that makes it difficult to survive an infection or other coexistent diseases affecting other organ systems. Without knowing the details of your son’s case, we have no way of knowing if his death was at all related to stopping therapy with Gilenya.
We would be happy to review his medical records to offer an opinion, if you are able to provide them with an english translation.

Revere (Rip) Kinkel MD

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