15 replies to this topic

[its_narc_iam_not_lazy]

I found out about 4 months ago that i have N. After years of suffering and two sleep studies. I thought that once i found out what was wrong it would be an easy fix. Boy was i wrong! Anyway here is what I need help with. My employier carries insurance on me but the nuvigal and the xyrem are both third tier drugs and i need to pay a fifty dollar co. pay. With the other meds I take that is 110.00 a month. Way more then I can afford. Is there any help for a co.pay? I would really hate to have to go off the meds but I may have no choice. The next question I have is it may only a matter of time before I get caught sleeping at my job. I know that disability takes some time to get approved. Can I file now to get the process rolling? Any thoughts would be helpful. thank you.

[amazingracie28]

Hi-welcome aboard!
From what I know, Nuvigil has a patient assistance program only for those who do not have insurance coverage. Xyrem has an assistance program but I'm not sure what the terms are-just go to Xyrem.com and type patient assistance in the search box....a bunch of links will pop up. You may want to look and see if your state has any sort of prescription assistance program.

I personally don't have much experience as far as your disability question, but there are many on here who do. I know there have been posts on here about it though. Maybe try typing "disability" into the search box up top and see if anything useful pops up. Does your employer know about your diagnosis? Do you think they'd be understanding about it while you figure out the disability situation? You may be able to get accomodations for naps during the day if need be since N. is considered a disability.

Hang in there!

[Kathleen]

Dear Not Lazy,
I wish I had a great answer for you. I don't think you can apply for disability while still working. I could not apply for disability until after I left work, I am guessing that it's the same everywhere. I also had to get "short term dis" from my state first, meanwhile I applied for ssdi, it took me 2 and a half years to get approved (two denials and I finally went to Administrative Law Judge) That was over 10 years ago, so I do not know if things have changed. The pay is much less than working! Medicare part D has high co-pays for Xyrem too. Good luck with your job, hopefully with the right treatments you can continue to keep your job and benefits!

My non formulary co pays are $50 each too - The Xyrem, I am actually grateful to get it for $50 a month. I know that is not what you wanted to hear but, its WAY better than $2000 a month. For a small savings, you may be able to to mail order for the Nuvigil (90days supply for $100) which is what I do with Provigil.
Good luck!

[its_narc_iam_not_lazy]

Hi-welcome aboard!
From what I know, Nuvigil has a patient assistance program only for those who do not have insurance coverage. Xyrem has an assistance program but I'm not sure what the terms are-just go to Xyrem.com and type patient assistance in the search box....a bunch of links will pop up. You may want to look and see if your state has any sort of prescription assistance program.

I personally don't have much experience as far as your disability question, but there are many on here who do. I know there have been posts on here about it though. Maybe try typing "disability" into the search box up top and see if anything useful pops up. Does your employer know about your diagnosis? Do you think they'd be understanding about it while you figure out the disability situation? You may be able to get accomodations for naps during the day if need be since N. is considered a disability.

Hang in there!

I am not that good with computer so you will have to forgive me. Do I add my reply attached to your answer? Iam also very bad at spelling and the person that owns the computer I use doesn't want me to use the spell check that is provided. Ok I did manage to get a card from the nuvigal rep. that will help me with my co-pay. But that will run out in April. The Xyrem was free the first time but Iam almost done with that. Jill my contact at Jazz said that there is no help for the co-pay on xyrem. I would like to scream and say ( but you people are making a small fortune on this stuff and you can't spare a few bucks) but i know it won't do any good. Sorry about that sometimes I just have to get out my emotions. Anyway I guess I will just take what I have and then it will be back to sleeping on the way to work at work and on the way home then when I get home strait to bed. I just get so frustrated because I am trying to keep my job and still make it but times are really tuff. The place that I work is fairly relaxed I can sleep over lunch most of the time. But I have noticed my body changing I seem to need more sleep as I get older and when I go off the meds it will be tuff. Shortly after I found out that I had N the doctor gave me a free 7 day trial of nuvigal. when that was all I crashed big time. I was falling a sleep in front of the guys I work with. It was bad. Anyway thank you for the responce. I hope this makes sence to you.

[its_narc_iam_not_lazy]

Dear Not Lazy,
I wish I had a great answer for you. I don't think you can apply for disability while still working. I could not apply for disability until after I left work, I am guessing that it's the same everywhere. I also had to get "short term dis" from my state first, meanwhile I applied for ssdi, it took me 2 and a half years to get approved (two denials and I finally went to Administrative Law Judge) That was over 10 years ago, so I do not know if things have changed. The pay is much less than working! Medicare part D has high co-pays for Xyrem too. Good luck with your job, hopefully with the right treatments you can continue to keep your job and benefits!

My non formulary co pays are $50 each too - The Xyrem, I am actually grateful to get it for $50 a month. I know that is not what you wanted to hear but, its WAY better than $2000 a month. For a small savings, you may be able to to mail order for the Nuvigil (90days supply for $100) which is what I do with Provigil.
Good luck!

If I can some how manage to get the money to pay for some meds I am going to ask my doc. to perscribe the highest dose he can and then I plan on only taking like half a pill or whatever dose I am supose to be on. Mabey that way I could make it streach a little longer. Not sure if that makes any sence to you or not. Thank you for your responce

[Mee]

Wow. Way to be pro-active! I'm amazed by your resilience and resourcefulness. I'm expert in these matters but I would suggest that you speak to your doctor about your concerns before giving up. Perhaps there is a generic version of the drug or an alternate drug that will meet your needs and still be affordable. Have you tried Provigil? Perhaps it may be a tier-1 co-pay drug. Also, I recommend talking to your health insurance carrier. You can always argue that a Tier 3 drug should be a Tier 1 drug. Strangely, my insurance wrote me a letter to tell me that one of my generic medications moved from Tier 1 to Tier 3 and that they encourage me to take the brand name prescription as it was a Tier 1. That seem counter-intuitive but I imagine my insurance has made a nice deal with one of the drug companies. Who knows... but it doesn't hurt to ask nor voice your perspective.

Please let us know how you are doing and if you take any further actions.
I wish you the best.
Mee

[Saraiah]

Dear Not Lazy,

The health system in this country has got to go, and your situation is a prime reason why. I've got four suggestions for you:

1) Go to your HR department and ask for Family Medical Leave Act (FMLA) paperwork. Have your doctor complete the simple paperwork they give you, which allows you to get time off when you need it for medical reasons. That way, if you have a day on which you absolutely cannot stay awake, you can take an afternoon off without getting fired. This may also protect you to some extent from being fired for falling asleep on the job - because it's harder for your company to fire you for the effects of a disability that you've notified them about.

2) Also think hard about what "accomodations" might help you to do your job while staying awake. For example, you might write a letter to your HR department with the help of your doctor to state that you need to be excused and off the time clock at strategic times to take a half-hour nap, and make up the time by staying later than you do now. There are also devices out there that you can wear on your ear that sound a loud alarm when your head nods... Anything that you can think of to help you stay awake on the job might be an accomodation. Your employer is required by law to provide you with such accomodations, as long as you can do your job with the help of those accomodations.

3) There are a lot of stimulants out there that people take for narcolepsy, beyond just Provigil and Nuvigil. You might want to talk with your doctor about all of the different stimulants that he/she might prescribe, and then call your insurance agency to see what the different copays might be. Hopefully, some of them would be more affordable.

4) This is counter-intuitive, but when you need to stay awake, drink and eat HOT foods and liquids. A study was done in the Netherlands in 2008 which showed that, in comparison to healthy people, the temperature of PWN's bodies is usually like the temperature of a healthy person right before he/she falls asleep. That is, our "core" temperature is cool, and our hands and feet are warm. The study showed that when the PWN raised the temperature of their "core" by eating and drinking hot foods and simultaneously cooled their hands and feet, they stayed awake 25% longer than they did otherwise. I drink hot tea and wear shoes that expose as much of my feet as possible all day. It's nowhere near the effect of stimulants, but I figure I'll take all of the help that I can get.

Good luck! Let us know how it goes!

Saraiah

[SleepySusan]

4) This is counter-intuitive, but when you need to stay awake, drink and eat HOT foods and liquids. A study was done in the Netherlands in 2008 which showed that, in comparison to healthy people, the temperature of PWN's bodies is usually like the temperature of a healthy person right before he/she falls asleep. That is, our "core" temperature is cool, and our hands and feet are warm. The study showed that when the PWN raised the temperature of their "core" by eating and drinking hot foods and simultaneously cooled their hands and feet, they stayed awake 25% longer than they did otherwise. I drink hot tea and wear shoes that expose as much of my feet as possible all day. It's nowhere near the effect of stimulants, but I figure I'll take all of the help that I can get.


Saraiah

Saraiah, that is so weird! My body temp is always low and my hands and feet are almost always warm. I'm going to have to try that. Thanks.

[vidar]

1) That advice about hot drink/food is very good. It really does help, IN ADDITION to you medications.

2) It seems like your main problem is cost. Beleive it or not there is no good evidence to support the claim that Nuvigil or Provigil are any better than much cheaper older stimulants. Xyrem is, frankly, one of a kind and their is nothing to "replace it with" (sorry about that co-pay).

These older stimulant drugs do, however, have 60 years or more of clinical experience behind them saying they work and often can work well (enough ). What works well for one person, may not work well for another. "Results may vary..." and "One size fits all normally leads to unhappy customers" are some of the sayings that come to mind (a neurosurgeon actually repeated these sayings when speaking about a complex brain surgery, so some doctors do get 'it'). But, because you have never tried these older drugs, and your monetary situation, I think you need to have a long conversation with your doctor about these older drugs. These older drugs are known by their brand names of Ritalin, Adderall and Dexadrine. Many are now sold in extended release versions generically as well. For example Generic dexadrine, is a teir 1 (lowest copay)for Aetna, with a quantity limit for 4 tablets at a given strength. For BCBS I think it is the same but can't look up the QL. This is just an example of what you will have to do. I imagine Ritalin will be teir 1 too.

I hope this has given you some information you can think on when making these important choices. I recommend you do what many patients with complex insurance issues do and that is bring your handbook and full drug plan with RX benefits card in to your next appointment. Then tell your doctor the combination of two teir 3 co-pays is too much and you could like to try a teir 1 stimulent to go with your Xyrem instead of provigil.

3) Currently provigil is more expensive then Nuvigil. This is because cephalon wants to switch everyone who is on provigil to nuvigil before provigil goes generic. Oddly, provigil may be back on track to go generic this year after a lawsuit by the FTC against Cephalon and several generic drug makers of the legality (or illegality) of a settlement. It also appears that Nuvigil could be going generic in about 30 months because of a lawsuit by Teva (I think). Their is also a Copay card for Nuvigil that you can get which pays up to $50 of your monthly co-pay for one year.

[drago]

I found out about 4 months ago that i have N. After years of suffering and two sleep studies. I thought that once i found out what was wrong it would be an easy fix. Boy was i wrong! Anyway here is what I need help with. My employier carries insurance on me but the nuvigal and the xyrem are both third tier drugs and i need to pay a fifty dollar co. pay. With the other meds I take that is 110.00 a month. Way more then I can afford. Is there any help for a co.pay? I would really hate to have to go off the meds but I may have no choice. The next question I have is it may only a matter of time before I get caught sleeping at my job. I know that disability takes some time to get approved. Can I file now to get the process rolling? Any thoughts would be helpful. thank you.

Hey there - firstly, where do you live/work? My answers apply only to the USA...

Secondly, Xyrem and Nuvigil are two prescription medications that can be prescribed. There are other alternatives that have generic components, which might be as effective or better. Ask your doctor.

Also, many insurance companies have an appeal application - where you can appeal to apply benefits or something. You might be able to write them a letter or something that states that Xyrem/Nuvigil work for you as a narcoleptic patient, but you cannot afford the $50 copay. Exploring pharmaceutical alternatives might save YOU money in the end, but it may cost the insurance company, depending on how long it takes you to find what works. (If you enter a revolving door of prescriptions, where you could be changing prescriptions each month or every other month, the insurance would have to pay out a lot more over a year... and your overall copays may go down, but the insurance company may be paying more.) This might be enough to knock the copays down to a second-tier copay or something...

Or, as someone else suggested, you can ask for a big prescription that you use over 3-4 months or something. (ie if your Nuvigil is 200mg, get a 400mg pill twice daily, cut them in half = 120 days of dosage) But your doc might not feel comfortable doing that with something like Xyrem...

Thirdly, for disability, what do you mean "takes time to get approved"? The Americans with Disabilities Act (ADA) provides protection to anyone diagnosed with a disorder that qualifies them as 'disabled' under the ADA. Your work must provide accommodations for your disability...

Good luck -
drago

[chasing_sleep]

Hey there - firstly, where do you live/work? My answers apply only to the USA...

Secondly, Xyrem and Nuvigil are two prescription medications that can be prescribed. There are other alternatives that have generic components, which might be as effective or better. Ask your doctor.

Also, many insurance companies have an appeal application - where you can appeal to apply benefits or something. You might be able to write them a letter or something that states that Xyrem/Nuvigil work for you as a narcoleptic patient, but you cannot afford the $50 copay. Exploring pharmaceutical alternatives might save YOU money in the end, but it may cost the insurance company, depending on how long it takes you to find what works. (If you enter a revolving door of prescriptions, where you could be changing prescriptions each month or every other month, the insurance would have to pay out a lot more over a year... and your overall copays may go down, but the insurance company may be paying more.) This might be enough to knock the copays down to a second-tier copay or something...

Or, as someone else suggested, you can ask for a big prescription that you use over 3-4 months or something. (ie if your Nuvigil is 200mg, get a 400mg pill twice daily, cut them in half = 120 days of dosage) But your doc might not feel comfortable doing that with something like Xyrem...

Thirdly, for disability, what do you mean "takes time to get approved"? The Americans with Disabilities Act (ADA) provides protection to anyone diagnosed with a disorder that qualifies them as 'disabled' under the ADA. Your work must provide accommodations for your disability...

HOpefully I am doing this right!

I was wondering what help anyone can offer me. I have been disgnosed w/ n and periodic limp movement disorder since 2007. I have been on and off fmla since I can't always meet the 1250 hrs to get approved at my job. I have been there for 4yrs. I have been on and off short term disability due to my condition. I have also been disgnosed w/ sjogren's syndrom and i have had epilepsy since i was 14. meds work then stop. i am always tired. i am on thin ice because of my attendence but it is due to my medical issues. my work is aware of my issues and they tell my to apply for fmla and i just get denied. i have been out due to the narc. again. when i spoke to my leave counsler which she never returns my calls she said i am in gap period for short term disability. my dr. and i have not really broached the subject of extending to long term. i really try all that i can but i work in a really stressful place which i think just adds to my condition. my work does offer a long term disability option which i know is a only 60% of my pay but if i lose my job that is no money, and no insurance. i am kind of a weak person and they know they can just push me around. i work for a huge insurance company and i am just body to them.

[vidar]

Chasing Sleep: I certainly think you need to sit down with your doctor and discuss the fact that you have multiple medical conditions that both interfere with each other. I would also recommend speaking to HR about longterm disability. Frankly, the way you portray things as going, it seems to me like it is only a matter of time until you end up on longterm anyways. IF you get fired first then you will not have long term disability through work and will only be able to get SSDI which takes a lot of time and effort to get on. The bottom line is if you epilepsy and narcolepsy are not well controlled then its kind of impossible to hold down a job.

As it is, most of the epilespy medications will interfere with most narcolepsy medications and vice versa.

The last thing is you should consider speaking to you doctor about a referral to a neurosurgeon for either vagal nerve stimulation (VNS) or deep brain stimulation (DBS) to control your epilepsy. Both provide excellent results and would allow you to have much improved control of your epilepsy. This would allow you to then focus on getting your narcolepsy under control so you could get your life back. Both DBS and VNS are reversible surgeries that are becoming very common. In fact, VNS is not even brain surgery and just involves a simple procedure to put an electrode on a nerve in you lower neck and a battery under your clavicle (like a pacemaker). It is an out patient procedure.

[its_narc_iam_not_lazy]

1) That advice about hot drink/food is very good. It really does help, IN ADDITION to you medications.

2) It seems like your main problem is cost. Beleive it or not there is no good evidence to support the claim that Nuvigil or Provigil are any better than much cheaper older stimulants. Xyrem is, frankly, one of a kind and their is nothing to "replace it with" (sorry about that co-pay).

These older stimulant drugs do, however, have 60 years or more of clinical experience behind them saying they work and often can work well (enough ). What works well for one person, may not work well for another. "Results may vary..." and "One size fits all normally leads to unhappy customers" are some of the sayings that come to mind (a neurosurgeon actually repeated these sayings when speaking about a complex brain surgery, so some doctors do get 'it'). But, because you have never tried these older drugs, and your monetary situation, I think you need to have a long conversation with your doctor about these older drugs. These older drugs are known by their brand names of Ritalin, Adderall and Dexadrine. Many are now sold in extended release versions generically as well. For example Generic dexadrine, is a teir 1 (lowest copay)for Aetna, with a quantity limit for 4 tablets at a given strength. For BCBS I think it is the same but can't look up the QL. This is just an example of what you will have to do. I imagine Ritalin will be teir 1 too.

I hope this has given you some information you can think on when making these important choices. I recommend you do what many patients with complex insurance issues do and that is bring your handbook and full drug plan with RX benefits card in to your next appointment. Then tell your doctor the combination of two teir 3 co-pays is too much and you could like to try a teir 1 stimulent to go with your Xyrem instead of provigil.

3) Currently provigil is more expensive then Nuvigil. This is because cephalon wants to switch everyone who is on provigil to nuvigil before provigil goes generic. Oddly, provigil may be back on track to go generic this year after a lawsuit by the FTC against Cephalon and several generic drug makers of the legality (or illegality) of a settlement. It also appears that Nuvigil could be going generic in about 30 months because of a lawsuit by Teva (I think). Their is also a Copay card for Nuvigil that you can get which pays up to $50 of your monthly co-pay for one year.

thank you for the info. When I was trying to get on provigal the ins. co. said I had to try some of the other teir 1 drugs first before they would aprove nuvigal. I went threw the process . None of the other ones worked for me. I currently have a card from the drug rep. that takes my co. pay to 10.00 dollars but that is going to end in may I think. Oh well it is what it is and I will just contiue to make it the best I can.

[its_narc_iam_not_lazy]

I wanted to take a min. to thank all of you for your replies. I don't get time to check in on a reg. basses. Iam now just making due the best I can. I am taking my nuvigal every day witch helps alot. the xyrem I have been able to strech out for sometime now by only taking it when I am just to exausted to go on. I continue to stay in contact with my sleep ncenter and the people at jazz. I have not given up hope yet and I contiue to try to find a way to get my meds. Spring seems to be breaking here in the east and that seem to be helping alot in my out look. I guess the shorter days have something to do with it not sure. In the winter I just want to hibernate. Does anyone out ther suffer from cataplexie? I have been noticing mine getting worse. Yesterday I was playing the wii with my kids when I tried the boxing I had to stop after about 10 second because I thought I was going to pass out. any suggestions?

[mainmchnc]

The more documentation you have the better!!! Get the doctor to spell it out, so many tards that soon as you say N they say that your like Deuce Bigallo? no i'm not drowning n my soup >.> lol
have them write out everything so when you claim they see the distances you have tried to go.

Currently i'm Army and they pay all the pills, and are talking of kicking me out for the N, not that i think i mind much... don't want to go to Iraq w/ this again >.> lol



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I'm as blunt as you have made me. Listen the first time and I won't tell you twice.

[Sue H]

I found out about 4 months ago that i have N. After years of suffering and two sleep studies. I thought that once i found out what was wrong it would be an easy fix. Boy was i wrong! Anyway here is what I need help with. My employier carries insurance on me but the nuvigal and the xyrem are both third tier drugs and i need to pay a fifty dollar co. pay. With the other meds I take that is 110.00 a month. Way more then I can afford. Is there any help for a co.pay? I would really hate to have to go off the meds but I may have no choice. The next question I have is it may only a matter of time before I get caught sleeping at my job. I know that disability takes some time to get approved. Can I file now to get the process rolling? Any thoughts would be helpful. thank you.

I was also just told i have n and i am on xyrem and my co pay is 30.00 but actual price of it is 2881.02