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When Will I Hear From Xyrem Success?


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#1 CheeryBunny

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Posted 14 December 2013 - 02:55 PM

Hi! I'm delurking, having hung out for awhile and being very grateful for the info and help I've gotten from the group so far. :-)

I have N with C, moderately severe and debilitating daily. Last Thursday, my new sleep doctor prescribed Xyrem for me and thinks I'm good candidate for success with it, so I'm quite hopeful. I'm now waiting for a phone call from the pharmacy. How long does it typically take to hear from them after the doc submits the request? I'm feeling very hopeful and eager to get started.

Thank you!

#2 Hank

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Posted 14 December 2013 - 03:42 PM

You should get a call pretty darn soon. If you like, you can always give them a call and know for sure.

 

Know that beginning Xyrem is really a commitment to a process. You will start at the smallest dose with small increases every few weeks as you adjust.

 

Make sure that you start this process at a time when your stresses are reduced and emotionally you are relaxed. Make sure you have some flexibility in your schedule in case you have difficulty in the morning.

 

Prepare yourself to make adjustments to your diet- like extra potassium, less salt and no food for 2-3 hours before your first dose.

 

Consider getting yourself an eye mask and white noise machine, since you may be especially sensitive to light and sound while on Xyrem.

 

If you have others in your home, make sure they are educated about Xyrem as well.

 

Slow, steady, low stress, relaxation, self-care, good diet, peace and quiet at bed time- all will help.

 

Remember that taking Xyrem is not like taking a sleeping pill or knock out drops. You may have to bear through the adjustment period before you notice the benefits.



#3 Jennell

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Posted 16 December 2013 - 11:17 AM

I will second Hank's solid, good advice. It took much, much longer than I expected for the side effects to even out and dissipate and really receive the good benefit. For me, I'd say it was well into the fourth, fifth month before things were what I thought they'd be right at the beginning. And I don't say that to be discouraging, rather the opposite!! I've heard many folks mention opting out because of difficulties and thank God I did taste really sweet sleep the first night (only to be repeated sporadically for the next few months ;) )but it was a rest to my body that had been far too long absent just that one taste was enough for me to bear up through the challenges. And honestly, I think I had a more severe reaction than MOST people, so you'll probably have far less to deal with than me. So my point is - just don't quit if you don't see the magical sleep results we've all been craving right away, as Hank said, it is most definitely a process!!

 

Much success to you in your journey :)



#4 IdiopathicHypersomniac

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Posted 17 December 2013 - 11:03 PM

Actually Hank that's not true.  It should knock you out in 15 minutes at 2.25g.  It didn't do that with me, and so I had to use Ambien with it -- almost double to negate Xyrem's "dawning effect". Now they bumped me up to 3 grams twice nightly.  I thought this stuff was supposed to be like Diprivan.  Edluar knocks me out faster.



#5 CheeryBunny

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Posted 18 December 2013 - 01:48 PM

Thanks, you guys! I got a call from their nurse on Monday and I should hear from someone else to confirm the insurance situation "2-3 days" after that. I guess I must be impatient to get started because it feels like it's taking so long. I'm guessing I won't actually get started on the therapy until next week, at the soonest.

I'm nervous about it, but so hopeful that this will make things better!

#6 Hank

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Posted 18 December 2013 - 07:57 PM

Thanks, you guys! I got a call from their nurse on Monday and I should hear from someone else to confirm the insurance situation "2-3 days" after that. I guess I must be impatient to get started because it feels like it's taking so long. I'm guessing I won't actually get started on the therapy until next week, at the soonest.

I'm nervous about it, but so hopeful that this will make things better!

When your Xyrem arrives it will be shipped by FedEx and require a signature by an adult. They can also deliver to a 24hr FedEx- Kinkos and then you can pick it up when it works for you.

 

I never knew when someone would be home to sign for it and I didn't want to stress over that.



#7 browndog319

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Posted 18 December 2013 - 10:18 PM

I have it shipped to my office since having it shipped home with a signature would be a big hassle. Definitely consider if that's a possibility - it's in a discreet box, so no one will know what it is.

 

Listen to the advice about the process. It is definitely an interesting medication and the nights I've had the great nights of sleep, it's unreal. I've had a few nights that were challenging. But those were few and far between. And everyone's side effects are unique. You may have none. If you have any, someone on here has probably had it and can help you through it.



#8 IdiopathicHypersomniac

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Posted 18 December 2013 - 11:37 PM

I think the whole protocol for Xyrem is stupid.  If it's as dangerous as they claim, then they should test it on patients first in a medical setting with a nurse anesthetist, and under observation at various benchmark points.  Instead, they psych patients out and scare them with potential side effects.  That is the worst thing you can do, because the power of suggestion is something that can mess with your mind.  When I made this point, they agreed and tested it on me in the hospital.  The Xyrem people seemed more concerned about the medication falling into "enemy hands" than my own safety while taking it.

 

So, I took 2.25g in a medical setting where I knew I would be safe no matter what, and guess what ... 45 minutes passed and nothing happened.  I'm thinking to myself, what the hell is this junk, I'm still awake!  I got up, went to the bathroom and took some Edluar, and was out cold in 5 minutes!



#9 CheeryBunny

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Posted 19 December 2013 - 03:19 AM

My husband and I work from home, so receiving packages won't be a worry. I should find out tomorrow when to expect the shipment, then my sleep dr. wants me to come into the office for instruction... Surely this must be the most complicated prescription I've ever had!

I'm pretty much Little Miss Compliance, and since my cataplexy is (suddenly) out of control, I am SO ready to make this work!

#10 browndog319

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Posted 28 December 2013 - 07:46 PM

I've never been so obedient with a medication in my life! Keep us posted as to how it goes when you start it. I basically have to restart because I've been sick for the last 9 days and haven't been able to take it - with the coughing and stomach issues the illness brought, I didn't think it was a good idea to take this at night! You'll make your own choices as you get used to it and know how you react... everyone's experience is totally different.