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Starting Xyrem Next Week


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#1 2muchcoffee

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Posted 11 July 2009 - 01:30 AM

So, my sleep specialist and I decided that since my other meds aren't quite working, it's time to try Xyrem. I'm completely freaked out about it! I always nervous starting any new meds... I hate waiting to find out what special side effects I'll have to endure. This time I'm so much more nervous than ever before! I have high hopes for Xyrem working and I'm really hoping that one of the side effects is weight loss (I'm tired of the extra 50lbs that are result of other meds I've been on!). With three kids, I'm unsure about being knocked out for the night- my hubby is going to have to learn to sleep with one ear open! Lol! Also, I'm pretty freaked out about the possibility of wetting the bed! I'm so not ready for that one!

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!!)

#2 Mike M

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Posted 11 July 2009 - 12:03 PM

First and foremost, I moved the topic (per your request). Second, it is great that your are getting a chance to try Xyrem. It is even better that you do not have to worry about the cost. Are you actually meeting with Jazz reps? Is it for the introduction to Xyrem, or is it in relation to the payment help? I got to watch a fun video for my Xyrem intro. Will your doctor be there? Here are some initial questions that spring to mind for me (I have been on Xyrem for nearly 2 years and it definitely helps me):

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.

Cheers!

#3 2muchcoffee

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Posted 11 July 2009 - 10:02 PM

Thanks Mike... those are great questions! I've got to remember to write everything down to take to my appointment. I know I'll forget to ask anything if I don't!

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.



#4 Mike M

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Posted 11 July 2009 - 10:59 PM

Cool! I hope it goes great, and I think writing stuff down is an awesome way to handle the questions. I will post more if I think of them. Please keep us posted about how it goes.

#5 Jesse

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Posted 13 July 2009 - 09:55 AM

Hey, I hope the Xyrem does wonders for you! I was really nervous when I first started on Xyrem too - the concept of being drugged to sleep didn't really sit well with me. And I was scared to death about the possible bed-wetting side effect! Thankfully I didn't have any unusual side effects and the Xyrem started working after about a week or so. I've tried to make sure to always minimize my liquid consumption during the couple of hours prior to heading to bed, and make sure to always use the restroom before going to bed, and have never yet had the bed-wetting side effect as a result. I hope your Xyrem experience is a good one! Keep us posted please!

#6 Irishhh

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Posted 13 July 2009 - 11:16 AM

I'm sooo happy for you! and sooo jealous! I've been trying to figure out how I might be able to afford this stuff too. I need to find a new sleep doc because mine stared at my boobs and I just don't have any hope with him now.. before he did that though, he was cool. Yuck...

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 :)

#7 tracyb07

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Posted 13 July 2009 - 02:35 PM

I'm starting Xyrem tomorrow, I feel much better now that I've had my patient intake phone call. The specialist told me if I experienced bedwetting, vomiting or trouble breathing to call my doc as it would indicate the dosing was too high and that made me feel much better. I've been quite worried about the side effect of bedwetting, now I know if I make it through the first night without incident I'll probably be OK.

#8 Mike M

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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.


tracyb07,

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.

#9 2muchcoffee

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Posted 14 July 2009 - 09:54 PM

Lol...The bedwetting has been a concern of mine ever since I heard about Xyrem. A few months ago, I thought I would never consider taking anything that may leave me incontinent. At this point, with the cataplexy taking such a downward turn, I don't care if I pea in the bed, the kitchen or on the front lawn! As long as the cataplexy is better and I can laugh about it, it's all worth it!
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!!

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#10 Marcianna

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Posted 17 July 2009 - 12:42 PM

I live alone so wetting the bed is really not to big of a deal to me. But I can image how horrible it would be if you had a partner with you. Worse yet if you are trying to potty train a child, they would really not understand... Everyone stay positive and I hope you all have family who is willing to go through all this with you with out incident. Seems alot of us are starting at the same time here, so good luck to us all!

#11 ejohnson22

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Posted 18 July 2009 - 03:08 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!!

#12 Mike M

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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!

#13 2muchcoffee

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Posted 02 August 2009 - 10:12 PM

So, after getting through the paperwork and numerous phone calls, I've finally started Xyrem!! I took my first dose on Friday night. I definitely felt pretty freaky for the first little bit. I laid there without being able to move and woke up a couple of times in a panic. I had slight shortness of breath but I think it was more a problem of anxiety than anything. I don't think my hubby slept much that night... he was constantly watching me and making sure I was okay. He even had to roll me over to get me in a more comfortable position- Lol! He said I was talking/mumbling in my sleep which is weird because I remember trying to talk to him and I couldn't. I didn't end up taking my second dose that night... more for the hubby's sake than mine. I think he was so scared of something happening to me, I thought he needed a break- lol!
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??