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Insurance Doesn't Cover Xyrem, What Now?


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#1 Tom90

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Posted 09 December 2013 - 12:28 PM

I was diagnosed with N and mild cataplexy when I was 22 years old. I am 23 years old now and was medically discharged from the Navy. TriCare who was my insurance provider is no longer. Now I am currently going through the Veterans Affairs medical insurance for prescriptions. With that being said, Xyrem was my best option when it came to sleep aids. I stopped having cataplexy episodes durring the day -weak legs, loss of control when I was holding things, that blank stare into space, even memory loss as well, (this was an everyday day thing without being on Xyrem). Since my current insurance provider (VA) will not cover a costly drug such as Xyrem I have to figure out what I should do next for a sleep aid. I cannot function throughout these days since I've been off of it. All I want to do is lay in my bed and sleep through the day. It also doesn't help having PTSD with depression and anxiety. It's like a never ending cycle that I cannot win. Any information of sleep aids that have worked for anyone will be greatly appreciated. I am new to this forum and hope that I will find some comfort in dealing with this. Also I cannot take medicine that helps me stay wake or function durring the day due to the meds I'm taking for PTSD and depression.

#2 ironhands

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Posted 09 December 2013 - 12:36 PM

The manufacturer of Xyrem offers a program to aid those who do not qualify under insurance (if you meet their qualifications).  I don't know about the specifics, but I'm sure someone here does.



#3 ruthie s.

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Posted 09 December 2013 - 01:10 PM

Maybr try a daytime stimulant like adderall & xanax to sleep; any fam. doctor can prescribe these, espec. if you show your diagnosis paperwork. Almost all insurances accept both.

#4 drago

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Posted 09 December 2013 - 02:44 PM

Have you tried other sleep aids? I know Xyrem is the 'preferrred' treatment as it was developed for Narcolepsy w/Cataplexy, but there are other sleep aids out there that are less costly.

 

I tried Doxepine (which did NOT work for me) and Lunesta. Lunesta worked wonders for me.

 

Alternatively, is there any chance you can supplement your health insurance with additional insurance? Medicaid might be able to help, but that's a lot of paperwork/a big headache...

 

drago



#5 Hank

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Posted 09 December 2013 - 08:06 PM

I take Trazadone for sleep. It is an old school antidepressant that is veeerrry sedating. It is rarely used for depression but is useful for sleep. It is non addictive, has a short half life. Some people may feel sluggish or dizzy in the morning- that does not happen for me. It has become something I can rely upon for a restful night. It causes a slight increase in slow wave sleep, unlike other sleep meds, which is something that can especially benefit a PWN.

 

I also take Effexor for Catalpexy and it does a good job for me.

 

I hope you find a new alternative.



#6 Tom90

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Posted 09 December 2013 - 10:35 PM

Thanks everyone for your quick replies! I just got off work and feel exhausted. So as far as medicine for depression I take one 20mg of Fluoxetine everyday. So as far as stimulants to help me stay awake during the day wouldn't be a good idea since my doctor said it could cause more harm than good. I have about 15 different anxiety attacks a day. I wake up at night too covered in sweat and it's hard to go back to sleep. I'm really hoping that I can take most of y'all's comforting advice and talk with my primary care. Unfortunately with the VA it takes weeks just to see the doctor because he wants to do blood work a week prior to the appointment. Then the appointment last only 10min because there is a lot of other patients that need to be seen. So I'll just have to write down some of these meds and ask him which would be best for me. Also lately I have been having an increased number of hallucinations throughout the day and night when I decide to sleep. I know I probably shouldn't take naps durring the day when I have time off but it is so hard to say no to my bed! Is there anyway while waiting to be put on different medicines to keep these hallucinations down to a minimum? I've tried laying on my stomach but it still doesn't seem to work. Thanks again everyone !! :)

#7 britneyadams

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Posted 09 December 2013 - 10:47 PM

Thanks everyone for your quick replies! I just got off work and feel exhausted. So as far as medicine for depression I take one 20mg of Fluoxetine everyday. So as far as stimulants to help me stay awake during the day wouldn't be a good idea since my doctor said it could cause more harm than good. I have about 15 different anxiety attacks a day. I wake up at night too covered in sweat and it's hard to go back to sleep. I'm really hoping that I can take most of y'all's comforting advice and talk with my primary care. Unfortunately with the VA it takes weeks just to see the doctor because he wants to do blood work a week prior to the appointment. Then the appointment last only 10min because there is a lot of other patients that need to be seen. So I'll just have to write down some of these meds and ask him which would be best for me. Also lately I have been having an increased number of hallucinations throughout the day and night when I decide to sleep. I know I probably shouldn't take naps durring the day when I have time off but it is so hard to say no to my bed! Is there anyway while waiting to be put on different medicines to keep these hallucinations down to a minimum? I've tried laying on my stomach but it still doesn't seem to work. Thanks again everyone !! :)

If you have a Xyrem Rx contact the success program they may be able to help you with cost! 



#8 Hank

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Posted 09 December 2013 - 11:24 PM

Thanks everyone for your quick replies! I just got off work and feel exhausted. So as far as medicine for depression I take one 20mg of Fluoxetine everyday. So as far as stimulants to help me stay awake during the day wouldn't be a good idea since my doctor said it could cause more harm than good. I have about 15 different anxiety attacks a day. I wake up at night too covered in sweat and it's hard to go back to sleep. I'm really hoping that I can take most of y'all's comforting advice and talk with my primary care. Unfortunately with the VA it takes weeks just to see the doctor because he wants to do blood work a week prior to the appointment. Then the appointment last only 10min because there is a lot of other patients that need to be seen. So I'll just have to write down some of these meds and ask him which would be best for me. Also lately I have been having an increased number of hallucinations throughout the day and night when I decide to sleep. I know I probably shouldn't take naps durring the day when I have time off but it is so hard to say no to my bed! Is there anyway while waiting to be put on different medicines to keep these hallucinations down to a minimum? I've tried laying on my stomach but it still doesn't seem to work. Thanks again everyone !! :)

Night sweats are a common occurrence with N.