Scared to try Xyrem
I’ve just been prescribed Xyrem to manage my cataplexy and plan to start it this weekend. I’m scared in case it makes me sick and I can’t work. I can’t afford time off and there’s already a risk of losing my job. The consultant wants to start on 1g and increase every two weeks but that seems way too low from everything I have read.
Hi
. It can be scary to start a new medication, especially one with a long list of potential side effects, but keep in mind that the FDA requires that drug manufacturers list every reported side effect even if only a handful of people reported them and even when there is a possiblity it's not related at all. You might experience some side effects, but you might experience none at all.
I have never taken Xyrem, but here are articles from two people who have taken it: https://narcolepsy.sleep-disorders.net/living/xyrem-side-effects and https://narcolepsy.sleep-disorders.net/living/xyrem-expectations. I thought the articles might provide you with some insight.
Is your employer aware that you have narcolepsy with cataplexy? If so, or if you are comfortable disclosing it, maybe you can discuss your concerns about starting the new medication with your employer and ask for some leniency as you adjust to it. You have protections under the Americans with Disabilities Act, but those protections only apply if your employer is aware of the condition.
Here is a dosing chart for Xyrem: https://www.drugs.com/dosage/xyrem.html. It does seem that your doctor is starting you off on an amount that is lower than the recommended dose, but it's possible your doctor has seen better results and few side effects with a gradual introduction of Xyrem. Can you message your doctor to find out why you were prescribed 1 g to start?
I hope others chime in with their own experiences and that Xyrem proves effective for you. Please keep us posted. I'll be thinking of you. - Lori (Team Member)
