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Has anyone had to stop Gilenya? As I’ve been told it can make you relapse and may get rebound syndrome?
@A MyMSTeam Member I’m sorry you had such a bad neurologist who didn’t give you correct information that caused you to go through what you and your husband did. I can tell you from my own personal experience of preparing and taking my son to college that stress caused my MS to activate from a dormant state it had been in for years. I firmly believe that was the reason.
It’s terrible having to go through an experience like you did with your hormones out of wack, grieving, stress I’m sure you were feeling and not taking your Gilenya, all together created the Perfect Storm for a major relapse to occur, which it did.
Did you ever find out why your neurologist didn’t tell you to use contraception to avoid getting pregnant until Gilenya was out of your system, that doesn’t make sense? Are you still going to the same neurologist, if so, why? I just read an article that says someone should wait TWO months once you stop taking Gilenya before trying to get pregnant and use contraception.
It makes me mad when neurologists who are supposed to be knowledgeable on specifics of MS medications aren’t. To have your neurologist give you the green light to start trying to get pregnant even though Gilenya was still in your system was totally unacceptable and negligent in my opinion.
Did you ever call the Practice’s office manager and tell them about what happened? If not, you could and ask them to make sure ALL neurologists are up to date on protocols for each type of MS medication if a patient wants to get pregnant so they don’t have the same thing happen to them that happened to you.
I found an article that was interesting and I’m attaching a link so if anyone else reads this post, plan to have a family and take Gilenya they won’t have to worry about what they have to do in order to start trying to get pregnant:
https://www.ema.europa.eu/en/news/updated-restr...
I stopped Gilenya to try and get pregnant. My neuro did not recommend a washout or waiting period. I got pregnant faster than anyone expected (like, the week I stopped taking G), and I miscarried shortly after. Whether it was just one of the unlucky 25% that end in miscarriage, or the G still in my system, is unclear. And whether my rebound relapse that happened shortly thereafter was solely because of stopping Gilenya, or if the stress and sudden fluxuation of hormones played a part as well, I dont know. But I know in my 11 years of MS, hands down the worst relapse Ive ever had was about 2 months after stopping Gilenya.
@A MyMSTeam Member I had no relapses while taking Gilenya and Aubagio, last relapse was back in 2012 while I was taking Tysabri; diagnosed in 2010. Like I mentioned before, the only reason I stopped taking Gilenya was my body could no longer tolerate it as revealed by one of my regular blood test results. I asked to stop taking Aubagio and my neurologist was on board with me to do it. For more details read my Story link.
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