Last reply 2 years ago
Take gilenya before u go to sleep!

Hi been on gylenya now for 1 year. At first it was fantastic loved it, game me so much energy for 3 months then I felt horrible legs where tired. I wanted to give it up. Then a few months ago I have been taking it at night before I go to sleep. I wake up alert with energy but I still take my hymalayn Goji juice which I have been taking for 12 years now. Gilenya is my only treatment I have taken. I was not on anything for 15 years. Touch wood I haven’t had a relapse since I have been on gilenya. I take at night gilenya, magnesium, cholesterol tablets and in the morning vitamin D and my himalayan GOJI JUICE which I love.
Take care

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fozgod1
3 years ago

Thanks for the heads up start my G on weds.


Anonymous
3 years ago

I have taken Gilenya since it was introduced in the US in 2010. I too found it was better to take at night. However, sometimes I do wake up with lower back, hip pain. It seemed that going to every other day dosing resolved that and helped with the fatigue. MS is for me all about making choices to balance effects of the medications. My doctor is in agreement. Best Wishes!


tabbycat
3 years ago

I take it in the morning, no problem.


befuddled
2 years ago

Started it on April 6 this year after a diagnosis involving two flares in 3 months. I found that it ruined my days, so dizzy and lethargic. I moved it to night time because I started the dose in Australia, and I live in Europe. Ive found taking it at night gives me the days back. Though I do have to go to the bathroom three times during the night, and I get very sore hips, lower back and feet, but I would rather that at night than ruining my day.


stumbler
2 years ago

@befuddled , you shouldn’t be needing to get up three times through the night. Have a word with your medical team and see if you get referred to a Urologist. 😉

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