I was really nervous about this appointment and wasn't sure how it would pan out. I had heard so many good things about this drug and how it changed their lives that I was afraid it was too good to be true. I had also heard many people say how hard it was to get from prescription to first dose that I was afraid it would take months to get on it. After that point, how much would it cost me? I had heard that before insurance XYREM cost over $3000. Would my insurance cover it? I had hundreds of questions going through my head. This could either be the beginning of an awesome experience or the beginning of an uphill battle to sleepy bliss.
It was the longest week of my life!! I did tons of research and picked the brains of those in my Narcolepsy support group on Facebook. My support group and http://www.xyrem.com/ were the most help full. In case my doctor didn't know much about XYREM, I printed out a bunch of information from the website to bring along. I wanted to get as much as possible out of this visit. So armed with information, my husband and I went to the appointment.
I hadn't seen my doctor in about ten years, so we had a lot of catching up to do but it didn't take to long to get to the point of the visit. "I'd like to try XYREM."
My doctor seemed a little taken back at first. "You know what that is?"
"The Date Rape Drug? Ya, so I've heard but I've also heard the wonders it's done for other Narcoleptics. I'm 32 years old and the last time I slept through the night was when I was 11 years old, I'm willing to try just about anything. I am tired of being too tired to live life. I have children that need me to be at my best and a job that is sick of me not being on time. Plus, my Cataplexy has started happening more than just when I laugh. I have started getting weak knees when something startles me. I don't want to wait for things to get worst to treat my Cataplexy. I know about all the possible side effects and that it's not an instant solution but I want to try. I need to try." By the end of my rambling, I had tears in my eyes and I realized I was holding my breath. The doctors next comment was going to be the deal breaker or deal maker.
"OK, well it does seem to be the best option for you at this point. Let's see what we need to do to get you set up. I have never prescribed XYREM before so I will need to get registered to be able to prescribe it and than they will contact you to get the information they need to fill your prescription. OK?"
I think that was the first time I took a breath during the whole visit. This was really happening. I was going to be getting XYREM!! I did all but hop out of my chair and hug my doctor. I could feel the tears begin to swell in my eyes but I held them back from falling down my face because this was only one hurdle. My insurance could still deny me.
We went over the website together and he was amazed how well I already knew it. I had even gone through the pages for doctors so I was able to help him there, too. We took a little survey to see how severe my Narcolepsy was and well, it was severe. He explained about XYREM being the only FDA approved treatment for XYREM so I had a good chance my insurance would not decline me. We went over some of the expectations of the medication. Some do's and don'ts. He also went over some things with Jeff. On what he could expect. Oh and let's not forget to mention, it's a Federally Controlled Substance so it's a felony to distribute it. With how hard it is to get the stuff, who'd be dumb enough?
After the Doctor left the room, I squealed like a teenage girl going to the prom for the first time. My husband and I hugged and he said, "That's it? You're getting it? Why didn't we do this sooner?"
"Well, I was afraid. I heard it was so much harder to get on it than that. Now we just need to get the insurance to cover it but you heard him, he said since I do have Cataplexy and it's the only FDA approved treatment, they shouldn't deny it but who knows. Guess we'll just have to wait and see."
The appointment was on a Thursday, late afternoon. I got my first call from XYREM Success Program on Tuesday saying they received my request and pending insurance we would be good to go. If for some chance my insurance would be denied there still were more options for assistance and so forth. I gave her my insurance and she said she would contact me as soon as she knew more. An hour later she called back and said my insurance was requiring a Pre-Authorization form from my doctor and depending on how soon my doctor filled it out and sent it back it could be a few days, but at least by then my doctor should be done getting registered.
Later that week I received another call from the Xyrem Success Program following up on how things were going. Did someone contact me about my request? Did I have any questions? Did I know who to contact if I did have any questions? Who would be contacting me after my Pre-Authorization went through. They were all extremely nice and helpful.
On the next Saturday, I received a letter in the mail from my insurance company. I HAD BEEN APPROVED FOR A YEAR OF XYREM. My husband called me at work to tell me but I was with a customer and couldn't talk, so he text me the news. That afternoon I called to check the status of my XYREM but had to leave a message.
On Monday, somebody called back and said my XYREM was Approved and a Nurse would be contacting me to go through the prescription and a ready check-list. She told me the call could take 20-30 minutes so make sure I was prepared for it. They contacted me later that day, I went through the check list with the Nurse, paid my $45 deductible and they told me it would be here the next day.
On Tuesday, December 20, 2011, I received my first box of XYREM. I remember it clearly because that is also my Wedding Anniversary. A dozen roses and XYREM is quite possibly the BEST Anniversary present EVER!!
Stay tuned for how my first two weeks went...
Night One: Thursday, December 22, 2011
I was so nervous about taking my first dose and how it would affect me, that I waited until a night where my husband would be there in the morning. Normally he works at 6am so he's gone by 5:30am and I was afraid that maybe I wouldn't wake up easily with my three year old son in the morning. I also wasn't sure how I would respond to the medicine on the first dose and wanted him to be there when I fell asleep.
I remembered that there has been a lot of discussion on the taste of XYREM so I took multiple suggestions and combined them (after I had already discussed it with the nurse on the phone). I mixed Blackberry Grape flavored generic Crystal light packets in a 20 0z bottle of water and used it in substitute for the 2 oz of water with my medicine. For the first 1-2 weeks, I take 2.25g in each dosing cup mixed with about 2 oz of water (which I substitute for Blackberry Grape water). I also, brush my teeth and use mouth wash. I chose to use the ACT brand because it has fluoride in it to help protect and strengthen you teeth. I had heard some people state that it is hard on your teeth and wanted to make sure I took extra precautions. For more official information on how to take XYREM refer to the Xyrem Success Program information included in your box with your XYREM or go to www.xyrem.com/how-to-take-xyrem .
I had a little bit of a late start the first night. I took my first dose at about 12:30am and set my alarm for 3:30am to take my second dose. I didn't realize until later, I should have set my alarm for 4:30am and if I woke up early but after 2 1/2 hours I could take my second dose and turn off my alarm. I made Jeff go to bed with me but he wasn't allowed to go to sleep until after I did. He said I was out within minutes of taking it and I snored all night long, except when my alarm went off. Words of advice, DO NOT put alarm on vibrate on the nightstand, it sounds like a machine gun going off by your head and both Jeff and I jumped a mile high when it went off.
I woke up the next morning feeling more refreshed than I had in a long time. Don't get me wrong, it's not an instant fix. I estimate that I got roughly 4 1/2 hours of "real sleep" on the initial dose. I did wake up about 30 minutes early for the first dose but was too out of it to realize to take the second dose early. I was asleep for about another 2 - 2 1/2 hours after my second dose. And I must say, the anti-yuck steps I took so I wouldn't taste the medicine seemed to work quite well.
Stay tuned for more...