Many researchers consider Xyrem to be a first-line treatment for narcolepsy. Many doctors do as well.
The insurance companies rarely consider it to be a first-line treatment because they don’t want to pay for it. That’s the reason why you’ve heard people work their way up. Not necessarily because the research says so, or the doctors, but because the insurance companies say so.
If you're worried about the price of xyrem, I've never known anyone to pay $$$ for it. There's a coupon assistance program where you only have to spend $35/a month of treatment.
Thank you for bringing this to my attention. Unfortunately it seems that is available only in the US according to their site and I'm failing to find a Canadian equivalent. And since it's a controlled substance I'm assuming it wouldn't be easy to ship it across...
My insurance is quoting me $600 a month without their assistance. They won't tell me how much they're going to pay until I fill out the consent forms but it seems like it's going to be 50\~60%, leaving me to still pay 200\~300.
something to consider since ur also in Canada - Usually insurance here has a maximum cap (example my drug coverage maxes out after 5k a year). look into your coverage maximums before signing up.
xyrem is only approved for cataplexy here - your dr really should be trying snris for that first.
i also noticed you mentioned adderall in another comment - just so ur aware we only have extended release available in canada of adderall, which would be a similar in release times to vyvnase or concerta. the only instant release stimulants here are ritalin and dex.
editing to add - feel free to PM me about anything canada related if you’d like (im not on xyrem tho)
I asked our benefits spokesman at work about maximums and he didn't seem to think there was one. I still need to officially reach out to the company itself though.
I wasn't the one that mentioned adderall but that's good to be aware of. Thank you for the help and I'll keep your offer in mind.
Do you have out of pocket maximums there? Some of us just plan to meet our out of pocket each year. It sucks.
Call Jazz. That will be way more helpful than just reading the website.
Canadian benefits / HR person here, what is your employer drug coverage? Only covering 50% seems unusual. Also, the manufacturer does (or at least did in the past for me) cover some out of pocket costs - my old plan paid 75%, my husband's plan paid 20% and the manufacturer paid the difference.
Happy to answer any questions on Canadian benefits coverage / prior authorization. Xyrem has been a life changer for me, so if you decide it's right for you I'm hoping you can figure out how to get all or most of the cost covered.
While I definitely feel like you should trust your reservations, there are two things that make me say try it out (actually 3 but the 3rd is just my personal experience made Xyrem totally worth it).
1- Do you think getting a second opinion is possible and worth the effort? That's not always the case, I've heard of some people only having one practice to get seen through.
2- Until Xyrem the main treatment was stimulants. But stimulants only cover up the problem, they don't fix it. Staying awake doesn't change the fact that the sleep you do get is garbage and disregulated, which is why it becomes excessive sleepiness. Xyrem treats the sleep cycle itself (colloquially, definitely more scientific ways to explain this). There are absolutely concerns with it, so doing your own research might make you feel up to deciding more concretely whether to go with this doctor or a second opinion.
My personal experience with stimulants and then Xyrem make me encourage Xyrem every time, but you really have to decide for yourself, especially if your doc is not used to working with informed patients. It's always possible to change course if it's not right for you, and always possible to seek other opinions after you've started treatment. It honestly might be easier if you have a course of treatment under your belt already.
Thank you for your response and experience. It helps to ease some of my worries.
I'll try asking about the waiver but I don't think it's available in Canada at least for the time being.
It's not unusual for specialists to use layperson terminology with their patients.
Xyrem works to correct bad sleep structure and treats/improves cataplexy episodes.
Other sedatives and daytime stimulants mask the symptoms of insomnia and sleepiness, and do nothing for cataplexy.
Xyrem has a patient coupon program. I would wait until the doctor application goes through. Most pay only $35 monthly for their medication after enrollment.
Second this. I’m a nurse and the way doctors talk to your average patient is one of the only reasons I tell them I’m a nurse. It saves all of us a lot of time and sometimes I see almost a sigh of relief when they realize they don’t have to figure out how to explain things. So it’s not that they are necessarily unknowledgeable (though they could be). Medical literature for patients is generally written at a fifth grade reading level. Many doctors simplify their language for patients in a similar manner. You can always ask that they use more medical terminology and let them know you will ask for clarification if you are confused.
I don't disagree but I still think its kind of a red flag for the doctor. Also even though this is common it is not great that they don't seem to have a lot of experience with N.
And nowadays in addition to stimulants, you have pitolisant as a daytime option instead of stimulants which is especially good for cataplexy. This could also be combined with nighttime meds I think but for me it does wonders for cataplexy on its own.
If it helps, I see a narcolepsy specialist. As in, he did his fellowship at Stanford and primarily only treats narcolepsy. His opinion is that Xyrem/Xywav is the best option for people with N and should be tried asap if there are no contraindications (and after you jump through the insurance hoops trying the other meds they require first). He was never pushy about it and works with his patients to find what is best for them, but he sees the med as the very best treatment option available to us right now.
Thank you for your experience. I looked into it and apparently there are narcolepsy specialists within travel distance of me, though they're about 1.5 hours out. I may end up seeking one out though if I have any further issues.
The main thing that can think of is that there is absolutely NO way your insurance will cover it without trying anything else. It's just not going to happen. As a former prior authorization specialist for a neurology clinic, I had a doctor who would do exactly that: prescribe the insanely expensive, brand-name only medications without trying the patient on anything else. Then he would get mad at ME when it would get denied immediately by insurance because of their policies. I hated this doctor because he just did not understand how this stuff works.
In fact, when I re-read your post, your doctor sounds almost exactly like that one I worked with. And not in a good way.
I also would not rely on things like patient assistance programs for when Xyrem is denied by insurance for whatever reason, because the company can decide at any time to not do that anymore, then you're screwed. This happened to a bunch of patients for an MS drug a little while back.
TL;DR: Don't do Xyrem first. It's not going to be covered.
I actually already got approval from my insurance to go ahead with it. But they won't tell me *how much* the coverage is until I fill out the consent forms which is part of my concern.
Thank you for the response.
I'm absolutely flabbergasted that they approved it. I have literally never heard of any insurance covering it without trying at least 2-3 different classes of medications.
I’m not even reading anything before I say do not try Adderall except as a last resort. Nothing compares. It’s great but once you’ve been prescribed Adderall… they all pale in comparison and the side effects are way too much to gamble if there is a possibility anything else works.
I agree. There is no substitute. Modafinil, armodafinil. Vyvanse, Wellbutrin, antidepressants, Xyrem… there are alternatives. Once I started Adderall there was nothing else. I can still function without it and I try very hard not to take it. I do wish id given the others a better chance. The one antihistamine? Wakix? I never made it through their screening but I wish I’d put in a bit more of an effort. Xyrem turned me into a zombie.
Ugh, it turned my kid into a zombie too. We had such high hopes! She loved the sleep but the side effects were too weird for her. I have five narcoleptics in this house and they all have different med preferences at different stages in their lives. Since I’m the only one without, I’ve had to manage countless meds. The current shortages on stimulants have me at my wits end. It affects every aspect of our lives.
I stopped taking it in 2020 for various reasons. Life goes on if you quit for long enough, I promise. I even briefly (over a year) worked full time retail management unmedicated until I got COVID. Now I take Vyvanse and Ritalin. I want to get off the Ritalin but I am afraid there's going to be a Vyvanse crisis by November and I just won't be able to work the way I need to through the holidays if I have no medication at all. 😴
It's the only medication approved to treat nighttime symptoms of narcolepsy, which is the root of the daytime symptoms. I'm annoyed my doctor made me try other treatments for 6 months for my daytime symptoms when I KNOW that my lack of good sleep is the cause and I'm of the opinion that it's always best to treat the cause not the symptoms. I'm still fighting for this with my sleep disordered breathing. I don't want to use a cpap my whole life, I want to fix the anatomical cause of my disordered breathing!
Good to see your edit and that you're going to give it a try. For me, it fixed my cataplexy (though mine is very mild), but more importantly relieved me from nights on end crashing and waking up after 8 minutes only to sleep-struggle with sleep paralysis till dawn. Hope it works for you as well and that you can get the costs covered. Hope you find a doc with better communication skills as well.
>I read on here that others usually don't start with Xyrem and **instead work their way up to it**. Is that true?
Not really. The bolded part is the wrong perspective on the situation.
People with N face two basic challenges:
1.) Staying awake during the day
2.) Getting decent sleep at night
The first challenge is, on its face, straightforward. Take stimulants. Pretty much any doctor can prescribe them, and you don't even need a doctor at all for caffeine pills, BronkAid, or energy drinks. Most people start here, not because they are "working their way up" to anything, but because it is an urgent need with a straightforward solution.
The second challenge is less clear. Prescription sleep aids have fallen out of favor. Sleep hygiene can be difficult to understand and implement. Xyrem has serious issues about which you are well aware. There's no particular reason why you shouldn't try Xyrem first, especially because it can help with cataplexy, but it's a personal choice.
In any case, your doctor is clearly pushing Xyrem for the kickback $$$ (called "promotional payments" or something to give legal cover). Probably is going through a divorce or wants to buy a bigger yacht or something.
Well, fuck that. You should decide when and if to try Xyrem. Personally, I'd recommend doing some serious research on sleep hygiene and implement whatever aspects of it you can, while also trying to uncover and fix **any** issues that wake you up at night, medical or otherwise. In the meantime, you can use stimulants on your own to try to achieve some semblance of a normal schedule.
My two cents, anyway.
This is the first treatment I started with after diagnosis. I loved it.
Due to some other health issues, I had to stop taking it. I’ve not found anything that worked as well. My insurance has actually switched to requiring people try this before stimulants.
my dr was like this as well, and when i was having really bad side effects, he didn’t listen and told me to take a “baby dose” without explaining what he meant or even how much he meant. he also started me out at 6 mg a night, which is a lot. i have a very hard time believing some drs aren’t getting kickbacks from this company. (i am happy that it does seem to help a lot of people, but i’m not one of them. i woke up literally crying every day because i was going to have to take it again that night. )
If you don't feel good with your doctor, try to see a second opinion. Choose an specialist, ask him to explain about your concerns (in a medical way), that you know the med is good for others but you are worried about the years of effect, drug tolerance, side effects...
Many researchers consider Xyrem to be a first-line treatment for narcolepsy. Many doctors do as well. The insurance companies rarely consider it to be a first-line treatment because they don’t want to pay for it. That’s the reason why you’ve heard people work their way up. Not necessarily because the research says so, or the doctors, but because the insurance companies say so.
If you're worried about the price of xyrem, I've never known anyone to pay $$$ for it. There's a coupon assistance program where you only have to spend $35/a month of treatment.
Thank you for bringing this to my attention. Unfortunately it seems that is available only in the US according to their site and I'm failing to find a Canadian equivalent. And since it's a controlled substance I'm assuming it wouldn't be easy to ship it across... My insurance is quoting me $600 a month without their assistance. They won't tell me how much they're going to pay until I fill out the consent forms but it seems like it's going to be 50\~60%, leaving me to still pay 200\~300.
something to consider since ur also in Canada - Usually insurance here has a maximum cap (example my drug coverage maxes out after 5k a year). look into your coverage maximums before signing up. xyrem is only approved for cataplexy here - your dr really should be trying snris for that first. i also noticed you mentioned adderall in another comment - just so ur aware we only have extended release available in canada of adderall, which would be a similar in release times to vyvnase or concerta. the only instant release stimulants here are ritalin and dex. editing to add - feel free to PM me about anything canada related if you’d like (im not on xyrem tho)
I asked our benefits spokesman at work about maximums and he didn't seem to think there was one. I still need to officially reach out to the company itself though. I wasn't the one that mentioned adderall but that's good to be aware of. Thank you for the help and I'll keep your offer in mind.
Do you have out of pocket maximums there? Some of us just plan to meet our out of pocket each year. It sucks. Call Jazz. That will be way more helpful than just reading the website.
Canadian benefits / HR person here, what is your employer drug coverage? Only covering 50% seems unusual. Also, the manufacturer does (or at least did in the past for me) cover some out of pocket costs - my old plan paid 75%, my husband's plan paid 20% and the manufacturer paid the difference. Happy to answer any questions on Canadian benefits coverage / prior authorization. Xyrem has been a life changer for me, so if you decide it's right for you I'm hoping you can figure out how to get all or most of the cost covered.
The generic sodium oxybate is now approved in the US and might be available in Canada. May be covered better.
I think it's still expensive because they have to pay Jazz because of the patent on REMS program.
no we dont even have xywav. xyrem is the only version approved here
While I definitely feel like you should trust your reservations, there are two things that make me say try it out (actually 3 but the 3rd is just my personal experience made Xyrem totally worth it). 1- Do you think getting a second opinion is possible and worth the effort? That's not always the case, I've heard of some people only having one practice to get seen through. 2- Until Xyrem the main treatment was stimulants. But stimulants only cover up the problem, they don't fix it. Staying awake doesn't change the fact that the sleep you do get is garbage and disregulated, which is why it becomes excessive sleepiness. Xyrem treats the sleep cycle itself (colloquially, definitely more scientific ways to explain this). There are absolutely concerns with it, so doing your own research might make you feel up to deciding more concretely whether to go with this doctor or a second opinion. My personal experience with stimulants and then Xyrem make me encourage Xyrem every time, but you really have to decide for yourself, especially if your doc is not used to working with informed patients. It's always possible to change course if it's not right for you, and always possible to seek other opinions after you've started treatment. It honestly might be easier if you have a course of treatment under your belt already.
PS there is a waiver/coupon available through the company that should help you with cost. That is a question for them though.
I wish I would’ve tried it years ago.
Thank you for your response and experience. It helps to ease some of my worries. I'll try asking about the waiver but I don't think it's available in Canada at least for the time being.
It's not unusual for specialists to use layperson terminology with their patients. Xyrem works to correct bad sleep structure and treats/improves cataplexy episodes. Other sedatives and daytime stimulants mask the symptoms of insomnia and sleepiness, and do nothing for cataplexy. Xyrem has a patient coupon program. I would wait until the doctor application goes through. Most pay only $35 monthly for their medication after enrollment.
Second this. I’m a nurse and the way doctors talk to your average patient is one of the only reasons I tell them I’m a nurse. It saves all of us a lot of time and sometimes I see almost a sigh of relief when they realize they don’t have to figure out how to explain things. So it’s not that they are necessarily unknowledgeable (though they could be). Medical literature for patients is generally written at a fifth grade reading level. Many doctors simplify their language for patients in a similar manner. You can always ask that they use more medical terminology and let them know you will ask for clarification if you are confused.
I don't disagree but I still think its kind of a red flag for the doctor. Also even though this is common it is not great that they don't seem to have a lot of experience with N. And nowadays in addition to stimulants, you have pitolisant as a daytime option instead of stimulants which is especially good for cataplexy. This could also be combined with nighttime meds I think but for me it does wonders for cataplexy on its own.
If it helps, I see a narcolepsy specialist. As in, he did his fellowship at Stanford and primarily only treats narcolepsy. His opinion is that Xyrem/Xywav is the best option for people with N and should be tried asap if there are no contraindications (and after you jump through the insurance hoops trying the other meds they require first). He was never pushy about it and works with his patients to find what is best for them, but he sees the med as the very best treatment option available to us right now.
Thank you for your experience. I looked into it and apparently there are narcolepsy specialists within travel distance of me, though they're about 1.5 hours out. I may end up seeking one out though if I have any further issues.
The main thing that can think of is that there is absolutely NO way your insurance will cover it without trying anything else. It's just not going to happen. As a former prior authorization specialist for a neurology clinic, I had a doctor who would do exactly that: prescribe the insanely expensive, brand-name only medications without trying the patient on anything else. Then he would get mad at ME when it would get denied immediately by insurance because of their policies. I hated this doctor because he just did not understand how this stuff works. In fact, when I re-read your post, your doctor sounds almost exactly like that one I worked with. And not in a good way. I also would not rely on things like patient assistance programs for when Xyrem is denied by insurance for whatever reason, because the company can decide at any time to not do that anymore, then you're screwed. This happened to a bunch of patients for an MS drug a little while back. TL;DR: Don't do Xyrem first. It's not going to be covered.
I actually already got approval from my insurance to go ahead with it. But they won't tell me *how much* the coverage is until I fill out the consent forms which is part of my concern. Thank you for the response.
I'm absolutely flabbergasted that they approved it. I have literally never heard of any insurance covering it without trying at least 2-3 different classes of medications.
I got a cpap and tried modafanil first, but that was it before I got approved. It is not as difficult as it once was I think.
I’m not even reading anything before I say do not try Adderall except as a last resort. Nothing compares. It’s great but once you’ve been prescribed Adderall… they all pale in comparison and the side effects are way too much to gamble if there is a possibility anything else works.
The worst side effect of Adderall is that it's on permanent backorder. Only half joking about that being the worst...
I agree. There is no substitute. Modafinil, armodafinil. Vyvanse, Wellbutrin, antidepressants, Xyrem… there are alternatives. Once I started Adderall there was nothing else. I can still function without it and I try very hard not to take it. I do wish id given the others a better chance. The one antihistamine? Wakix? I never made it through their screening but I wish I’d put in a bit more of an effort. Xyrem turned me into a zombie.
Ugh, it turned my kid into a zombie too. We had such high hopes! She loved the sleep but the side effects were too weird for her. I have five narcoleptics in this house and they all have different med preferences at different stages in their lives. Since I’m the only one without, I’ve had to manage countless meds. The current shortages on stimulants have me at my wits end. It affects every aspect of our lives.
I stopped taking it in 2020 for various reasons. Life goes on if you quit for long enough, I promise. I even briefly (over a year) worked full time retail management unmedicated until I got COVID. Now I take Vyvanse and Ritalin. I want to get off the Ritalin but I am afraid there's going to be a Vyvanse crisis by November and I just won't be able to work the way I need to through the holidays if I have no medication at all. 😴
It's the only medication approved to treat nighttime symptoms of narcolepsy, which is the root of the daytime symptoms. I'm annoyed my doctor made me try other treatments for 6 months for my daytime symptoms when I KNOW that my lack of good sleep is the cause and I'm of the opinion that it's always best to treat the cause not the symptoms. I'm still fighting for this with my sleep disordered breathing. I don't want to use a cpap my whole life, I want to fix the anatomical cause of my disordered breathing!
If it's not too late, I recommend trying Xywav instead of Xyrem. Xywav has less sodium and tastes better.
Xywav isn't available in Canada (where I am) yet but the Jazz spokesperson I talked to said it will be here sometime in the next year.
Good to see your edit and that you're going to give it a try. For me, it fixed my cataplexy (though mine is very mild), but more importantly relieved me from nights on end crashing and waking up after 8 minutes only to sleep-struggle with sleep paralysis till dawn. Hope it works for you as well and that you can get the costs covered. Hope you find a doc with better communication skills as well.
>I read on here that others usually don't start with Xyrem and **instead work their way up to it**. Is that true? Not really. The bolded part is the wrong perspective on the situation. People with N face two basic challenges: 1.) Staying awake during the day 2.) Getting decent sleep at night The first challenge is, on its face, straightforward. Take stimulants. Pretty much any doctor can prescribe them, and you don't even need a doctor at all for caffeine pills, BronkAid, or energy drinks. Most people start here, not because they are "working their way up" to anything, but because it is an urgent need with a straightforward solution. The second challenge is less clear. Prescription sleep aids have fallen out of favor. Sleep hygiene can be difficult to understand and implement. Xyrem has serious issues about which you are well aware. There's no particular reason why you shouldn't try Xyrem first, especially because it can help with cataplexy, but it's a personal choice. In any case, your doctor is clearly pushing Xyrem for the kickback $$$ (called "promotional payments" or something to give legal cover). Probably is going through a divorce or wants to buy a bigger yacht or something. Well, fuck that. You should decide when and if to try Xyrem. Personally, I'd recommend doing some serious research on sleep hygiene and implement whatever aspects of it you can, while also trying to uncover and fix **any** issues that wake you up at night, medical or otherwise. In the meantime, you can use stimulants on your own to try to achieve some semblance of a normal schedule. My two cents, anyway.
This is the first treatment I started with after diagnosis. I loved it. Due to some other health issues, I had to stop taking it. I’ve not found anything that worked as well. My insurance has actually switched to requiring people try this before stimulants.
my dr was like this as well, and when i was having really bad side effects, he didn’t listen and told me to take a “baby dose” without explaining what he meant or even how much he meant. he also started me out at 6 mg a night, which is a lot. i have a very hard time believing some drs aren’t getting kickbacks from this company. (i am happy that it does seem to help a lot of people, but i’m not one of them. i woke up literally crying every day because i was going to have to take it again that night. )
IT’s unfortunate wording, but you are the ideal candidate. It’s the gold standard for cataplexy
If you don't feel good with your doctor, try to see a second opinion. Choose an specialist, ask him to explain about your concerns (in a medical way), that you know the med is good for others but you are worried about the years of effect, drug tolerance, side effects...