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Xyrem...what's The Story


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#1 Tre

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Posted 09 February 2013 - 03:12 PM

so after a long process, (see earlier posts) I saw a doc in Ney York who said the doctor at Jefferson is dead wrong and I do have Narcolepsy. 

He has recommended to my doctor at Einstein that I start xyrem at a 4.5gm dose.  I am quite nervous since I have strange REM crap and lots of interesting parasomnias.

So I have an appointment Wed. to meet with the Einstein doc....How long should this whole process of getting the zyrem take?

I was a Nationally certified pharm. tech for 6 years and I'm so not even used to mail order let alone the xyrem.  What kind of process did you have to go through from the doctor prescribing to getting your meds?

 

I'll keep you all posted

 



#2 sweetest_shone

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Posted 09 February 2013 - 08:18 PM

so after a long process, (see earlier posts) I saw a doc in Ney York who said the doctor at Jefferson is dead wrong and I do have Narcolepsy.
He has recommended to my doctor at Einstein that I start xyrem at a 4.5gm dose. I am quite nervous since I have strange REM crap and lots of interesting parasomnias.
So I have an appointment Wed. to meet with the Einstein doc....How long should this whole process of getting the zyrem take?
I was a Nationally certified pharm. tech for 6 years and I'm so not even used to mail order let alone the xyrem. What kind of process did you have to go through from the doctor prescribing to getting your meds?

I'll keep you all posted



#3 munky

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Posted 09 February 2013 - 08:31 PM

I don't take Xyrem myself, so hopefully some of the folks here who do will chime in soon with the answers you need. However, it's my understanding that you can't get it at your local pharmacy. You can only get it through mail-order from the Xyrem pharmacy. From all I've read, they've been mostly good about making sure people get their meds on time, though there have been a few hiccups in the system.



#4 Tre

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Posted 10 February 2013 - 12:50 PM

Yea I was a CPhT in my college years and worked retail.  I know you can't get it in the Pharmacy.  I had talked to my insurance and Xyrem is it's own ball of paperwork so it requires more then a PA pretty much but they said they cover it.  I'll believe it when I see it LOL. 



#5 Megssosleepy

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Posted 11 February 2013 - 03:45 PM

so after a long process, (see earlier posts) I saw a doc in Ney York who said the doctor at Jefferson is dead wrong and I do have Narcolepsy. 

He has recommended to my doctor at Einstein that I start xyrem at a 4.5gm dose.  I am quite nervous since I have strange REM crap and lots of interesting parasomnias.

So I have an appointment Wed. to meet with the Einstein doc....How long should this whole process of getting the zyrem take?

I was a Nationally certified pharm. tech for 6 years and I'm so not even used to mail order let alone the xyrem.  What kind of process did you have to go through from the doctor prescribing to getting your meds?

 

I'll keep you all posted

For me the process was pretty quick, I finally told my doc I was willing to try it, he gave me the DVD to watch and the next day someone from SDS gave me a call and I got my package the next day (a Saturday).  You can only get Xyrem through SDS and they have a co-pay discount program.  I was originally told I would need to pay $600 but I only pay $35 a month.  

 

SDS calls me once a month to see if I am ready for my next shipment and it normally comes the next day.  

 

Also you said your Doc wanted you to start on 4.5?  You will be starting at 1.5x2 and then slowly (very slowly) tirate up to 4.5x2.  The tirating process took me about 3 or 4 months.

 

Oh and Xyrem takes care of REM problems once you are taking the full amount.  I still dream but not like before and plenty of times I cant quite remember them unlike before.

 

:)



#6 Megssosleepy

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Posted 11 February 2013 - 03:46 PM

oh and you will have your own Nurse who will call you frequently when you first start to see if you have questions or if you are having trouble.  Someone is always there and they are very helpful!



#7 Krickett

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Posted 11 February 2013 - 06:47 PM

It's not like most mail order pharmacy deals. they are very helpful and they always call me long before im out to schedule my next delivery! I think you will be pleased with the ease of it all especially after the trials and tribulations you have gone through thus far to get put on the xyrem.. breathe easy! And don't be scared of it, it takes getting used to but i think xyrem was created by angels lol