Starting Xyrem Next Week
Posted 11 July 2009 - 01:30 AM
The good news is that, since my hubby and I have NO medical coverage at all, my doctor has arranged for Xyrem to be completely covered by the pharmaceutical company! It certainly won't be forever but at least until we know if it will work they are absorbing the full cost. After that, they're willing to negotiate a price that we can handle. I'm so happy that for the first time since diagnosis we're getting some kind of break!!
I meet with the drug company on Wednesday, so if anybody can think of any questions I should be asking I'd appreciate some hints. I always think of everything I want to know after talking with doctors. Especially with this drug, I know there will be tonnes of things on my mind and I'll forget every single one of them!
Will keep you all updated once I start the Xyrem program!!
*( I just clued in that I should have posted this topic under "Treatment" not "Diagnosis". If mods want to move it, feel free! Thanks!!)
Posted 11 July 2009 - 12:03 PM
1. What is the dosing schedule that they are giving you? (usually you start with two 2.25 g doses, and then add .75 to each of them over a four week period. Two 4.5 g doses are the top level.)
2. If you start to feel side effects, can you increase in small increments? (some doctors have had patients do this and it has worked well.)
3. Do you have to use water to dilute the Xyrem? (many doctors tell their patients to use Crystal Light - I can live with the salty taste, but I know others who can't stand it.)
4. Will the SDS Pharmacy reps call you when it is time to order another prescription? (this is a service that they provide me, but make sure they do it when they are paying for your drug)
That is all for now. Xyrem is great. Even if you hit some rough spots, it is worth trying to do smaller increases. I sincerely hope that it works for you.
Posted 11 July 2009 - 10:02 PM
As far as I know, it's a Jazz rep that I'm meeting with. My doctor won't be at the appointment but he'll be in his office with patients. My appointment is at the end of the day so I'm sure if I need to ask him anything I'll be able to. The doctor is amazing that way... he's welcomed me to come into his office as often as I need to or call him at his office at anytime. He's also great about getting back to me personally instead of through his receptionists! Anyways, his nurse and one of the receptionist will be at the appointment with me to talk to the rep. We'll be discussing both the introduction to Xyrem and the payments. Also, there's a tonne of paperwork to go through and fill out.
Posted 11 July 2009 - 10:59 PM
Posted 13 July 2009 - 09:55 AM
Posted 13 July 2009 - 11:16 AM
I really hope it works out for you. and I think the suggestion about not drinking a few hrs before bed and making sure you go before you get in bed! Anything new can always be very scary, but most of the time it turns out to be so much less than we thought it would.
Good luck with this, and keep us posted! Also, maybe do a blog or diary of your experience. That would be helpful to others I'm sure
Posted 13 July 2009 - 02:35 PM
Posted 14 July 2009 - 09:27 PM
I'm starting Xyrem tomorrow, I feel much better now that I've had my patient intake phone call.
I hope that Xyrem works well for you. The Xyrem reps tend to be excellent. It will also be interesting to see how the first few doses go. While I know (from my wife) that I slept "better" during the first two weeks, I didn't truly feel the Xyrem until my third week. Feel free to keep us posted and to ask questions as you get ramped up.
Posted 14 July 2009 - 09:54 PM
As a person that used to always have the best one-liners, could always make people laugh in a bad situation and mostly could always laugh at myself... I'm so excited that if this works I'll finely stop sensoring what I want to say! Sometimes I feel like I could burst trying to hold in all my jokes... when I was younger, everyone I knew said I should be a stand up comedian. Although, those same people used think I was drunk at parties (I don't drink... I only have coffee, water or peppermint tea... I'm such a bad-ass. lol) while I was making everyone laugh.
Anyways, I'm blabbing... I'm getting so excited and nervous about my appointment tomorrow that I rambling... I don't think I'll be able to sleep tonight! Lol!!
Posted 17 July 2009 - 12:42 PM
Posted 18 July 2009 - 03:08 PM
Best of luck with it working for you!!
Posted 19 July 2009 - 10:38 PM
Hey! I am starting Xyrem hopefully this week if my medication gets here soon!! I am really nervous that it will knock me too out and I will miss an alarm or something important. It makes me even more nervous becuase I am a camp counselor and being able to wake up if my campers need me is a huge part of the job so hopefully it will help me instead of causing more problems!!
Best of luck with it working for you!!
Everyone does react differently to each med, but I would guess that initially you will only see mild impact from the Xyrem. Since you step up the doses, the first couple of weeks do not feel all that different for most folks. At the same time, it might be worthwhile to have another counselor available for your campers, because I know for me that there is NO way that I could help someone in the middle of the night at the peak of a Xyrem dose. Good luck!
Posted 02 August 2009 - 10:12 PM
The second night (last night) was perfectly fine. I fell asleep before realizing I couldn't move and I didn't feel the shortness of breath at all. I was definitely less stressed about the whole thing and I even took the second dose. The oddest thing is that I'm waking in the exact same position as I fall asleep in... that's never happened before. After both nights I felt pretty good when I woke up. I still got a little tired and had to nap but not quite as bad as usual. The cataplexy is still happening but I know that will take time.
So far all is good. I don't even mind the taste. It's not great but not near as bad as I thought it would be. My biggest complaint is not drinking water before bed and not having anything to eat after the kids go to bed! Not a huge sacrifice, just something to get used to.
I have one question for others who have used Xyrem: Is it normal to still have weird, vivid dreams for what seems to be all night long?? I wasn't expecting that, I thought it was supposed to put you in a different stage of sleep??