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[cottagelover41]

Hello,
I was curious about Gilenya. I was dx in 2009 with RRMS, and have been off any type of medication for the past 2 years. I was taking Extavia, but due to injection site irritation and flu like symptoms , I gave that up . I have been feeling relatively well off meds, but have new lesions as indicated by my latest MRI.
I have read positive and negative comments , and know essentially I have to make my own decisions, but wondered if anyone could share some of their personal experiences .

[Kimba22]

Hi cottagelover41,

Welcome to MSWorld! Sorry for the reason you are here, though. I'm glad you have been doing well, but sorry you have new lesions. Disease activity can be silent, and the damaged incurred unbeknownst us may not show up in clinical symptoms for years.

I did well on Gilenya, that is until my wbc count tanked. Ended up with some serious infections. If you do decide on Gilenya, make sure you get regular blood work AND that your neurologist has both received and read the results. Neuros have different cut off values, so that's something I'd also encourage you to find out.

Best of luck on whatever you decide ,

[cottagelover41]

Thank You Kimba22 .
I appreciate the reply . It is scary for sure , and hope to make an informed decision . I have a few weeks before my copay is accepted , but I know my neuro thinks it's time for me to be back on something . The thoughts of heart issues and infections are scary , but so is the prospect of losing my mobility , so I'll accept the challenge . Lol .

[hope32]

I'm still in the process of considering switching from Tec to Gil. Leaning toward it, but there are some scary stories.

Overall though at my MS Center, Gilenya seems to have been well tolerated by most. They've had very few patients complain of S/E's or ask to switch off it. Tec has a higher dropout rate even though initially (when I was switching from Beta) it seemed more promising.

Wishing you all the best!