(12-12-2013 12:54 AM)Kate Wrote: Robysue,
That's terrible that they refused to fill it. I'm sorry...that's so frustrating. How much is it and could you use lesser amounts of the Xyrem?
Xyrem is a highly controlled substance that is available from one
pharmacy in the US. (Yes, you read that correctly, all Xyrem prescriptions go through the same place, or they did back in January 2013.) The list price was something in excess of $3000 per month. And the dosage that was planned was the minimal starting dosage.
My insurance company pays for Xyrem coverage only if you are diagnosed with narcolepsy. And I don't have narcolepsy, and that was the official reason for denial of coverage. And even then they require pre-approval.
For anybody who is seriously considering starting Xyrem, it's worth understanding that the Xyrem dosing regime is not exactly straightforward. The drug has such a short half life that I was told my dosing instructions would include the following:
- Before going to bed, you must prepare a second dose of Xyrem (it's a liquid) and have the second dose on the night stand.
- Set an alarm for about 2 1/2 hours after going to bed (or equivalently about 4 hours before morning) to make sure that I woke up to take the second dose of Xyrem.
All in all, the more I learned about Xyrem, the less disappointed I became about the insurance refusing coverage. I still wish I'd had a chance to try it since it may have saved me some 8 or 9 months of serious Insomnia Wars, but at this point, my insomnia is (finally) being reined in by much more conventional methods.
If you really are curious about learning just how strong (but also how short acting) Xyrem is, it's worth reading http://www.xyrem.com/images/Xyrem_Med_Guide.pdf
even though it is published by the makers of Xyrem.
Quote:No, the pain is not controlled with the fentanyl. Since I have used it since it's inception, my body has just adjusted to it. My pain doctor won't help, so I am going to see someone else about it. I have been told that the doctor has to do a lot of math and different charts to change me over from fentanyl to another medication in increments. Not many of them want to bother with it.
Pain is a hard thing to manage. And the pain itself might be one of the things that is causing problems with the erratic sleep cycles. It can be difficult to get and stay asleep when you are dealing with serious pain issues.
Fentanyl is usually considered one of the "last resort" drugs for managing pain. Have you ever seen a pain specialist? Or is the pain medication primarily handled by person treating the fibromyalgia or one of the other conditions?
Has a doctor ever suggested "tag teaming" pain meds? In other words, has a doctor ever suggested using two very different pain meds that work in quite different ways? Fentanyl is an opiate; has anybody ever considered having you take something that's a non-optiate pain killer along with the fentanyl?
Best of luck in coming up with something that will effectively deal with the pain you're in.