Gilenya

[Vallie02]

Hi, I am going to be starting Gilenya next week and was looking to see what experiences people have had with this medication. I was diagnosed in 2012 and have been on Rebif for the last 5 years. I am switching because recently I have been feeling really wiped out the day after my shots. Thank you🌻

[Iona60]

Hi @inadeau. I have been on Gilenya for 1 year. I have more energy, but it gives me anxiety, especially in the beginning. It also seems to suppress my appetite and I've lost a lot of weight. The neuro says both of these are unusual and most people can't even tell they are on it. They sent a doctor to my house for the 6 hour start-up day. I have had one relapse while on it, which is probably due to the stress that I have been under.

[Vallie02 in reply to Iona60]

Thank you so much for responding. I know that everyone responds differently to these drugs. It sounds like overall it is working for you. I am hoping to get some energy back. Not looking forward to the six hours with the doc but hoping it is all worth it.

Wishing you all the best.

[Eleyne92]

Vallie02 I have been on Gilenya for 6 years with no relapses. I don't recall any issues when I started taking it, either. My neurologist checks my kidney function, as well as my lymphocytes and white blood cell count every 3 months. I also have a JCV check annually.

[Vallie02 in reply to Eleyne92]

I am glad you are doing well. I hope I have a similar experience 🌼

[bxrmom]

Vallie02 I hope that the new medication works for you. I have no experience as I just started Tecfidera after stopping Copaxone. Please keep us updated on how your journey with Gilenya goes

Jessie

[Vallie02 in reply to bxrmom]

I will, I take my first dose Tuesday 6/13. Fingers crossed.

[-BB-]

I was on Gilenya for 3 months. I had to stop due to elevated liver enzymes. I am now in the process of approval for Tecfidera. I hope the Gilenya works for you as it is nice to take a pill once daily vs injections or infusions.

[Vallie02 in reply to -BB-]

I am sorry it did not work for you. Please let us know how you do on tecfidera. Best wishes.