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Orexin/hypocretin Agonists?


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#21 IdiopathicHypersomniac

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Posted 17 August 2013 - 10:29 AM

Up here modafinil is about $1 per 100mg pill generic (made by Apotex).  Alertec (Provigil's brand name in Canada) is about $2 per pill.  The generic is actually better than the brand name.  I would advise anyone who is having trouble with Nuvigil in the States to try Provigil, and then the generic.  They're all different.



#22 ironhands

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Posted 19 August 2013 - 09:01 AM

Not as much as Xyrem!  Xyrem is paying thousands of dollars each month to flirt with death.  It costs $500 per bottle up here in Canada.  How many bottles are needed in a month in case I have to go that route?

$500 a bottle?  Well, that's better than the $2400 I was expecting, but still more than I could ever afford.  Bus fare is an issue :P

 

I don't think I'll be prescribed it, since my symptoms aren't severe at all - no cataplexy and I'm able to keep myself awake - but I really want to curb the dreaming.  I'm acutely aware of it now.  Just this morning I remember dreams during my snooze button times(alarm, button, deam for 15 minutes), three seperate waking/back to sleep events, three button presses.

 

 

From my understanding a portion of prescriptions are covered by the gov't, but it's all behind the scenes.  I can't be sure how true that is though, and I have no source.  Doctor mentioned something like that once, but I may have imagined it.  I'm expecting to get adderral, hopefully it's not expensive here.  That'll help me function in the day and hopefully curb the appetite, but I don't know if that'll stop the dreaming :(

 

Do any of you have appetite issues?



#23 DeathRabbit

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Posted 19 August 2013 - 11:01 AM

I'm a bit suspicious of that orexinal. How in the world did they get the FDA to classify a nasal spray as a dietary supplement??? Overall that looks like a snake oil version of the original idea. I'd consider trying it if it didn't cost more money than God's fingernail clippings.



#24 ironhands

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Posted 19 August 2013 - 11:29 AM

If it's found naturally in a food item, it can be sold as a dietary supplement - at least until the FDA classifies it.

 

Since they don't actually say what's in it, tough to make a call.  All they say is "Orexin Activating Matrix (Proprietary Blend)* 0.1 mg".

 

The true ingredients might just be caffeine and sugar.



#25 DeathRabbit

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Posted 19 August 2013 - 04:42 PM

But still, it's a spray. That just seems a little bit whack, whether it's legal or not. They were saying it was some protein blend, but I cant think of the last time I snorted a steak :P . Hmm, I could maybe snort protein powder though, perhaps I should give that a go lolol



#26 sleepers

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Posted 25 August 2013 - 12:12 AM

I take the medium dose of Xyrem, and they bill my insurer over $6,000 per month! Jazz Pharmaceuticals raises the price every 6 months. It's horrible. People without insurance have to go on disability to get medicaid so the govt. gets to pay for the meds and the PWN can't hold down jobs, since that would disqualify them from Medicaid. Of coures, they might get a job with insurance, but at these prices, I expect companies to strike Xyrem from their formulary, if they are allowed to do so. Roxane pharmaceuticals has applied to the FDA to make and distribute a generic Xyrem. PLEASE, everyone taking Xyrem, write the FDA and your congressperson requesting this be allowed. Otherwise, Jazz will continue to bleed our federal govt. coffers and insurance companies will eventually refuse to pay. This is a drug they bought from Orphan Medical; no money had to be spent by Jazz to research and test it. They were turned down by the FDA when they applied to market it for fibromyalgia. After the turn down they started this staggering price increase. Some doctors refuse to prescribe it for narcolepsy/cataplexy, knowing their patients cannot afford it. Please write Roxane pharmaceuticals and urge them to continue with their application for a generic. We all need this.

#27 IdiopathicHypersomniac

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Posted 25 August 2013 - 10:15 AM

sleepers -- I found out that the medium dose of Xyrem (6g per night) in Canada is only $1000.  9g per night is $1500 per month.  I'm going to try and get it.  Is anyone here from Canada taking Xyrem?



#28 ironhands

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Posted 25 August 2013 - 02:34 PM

don't they have free program for people with no money?



#29 Chippervan

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Posted 04 October 2013 - 03:55 PM

500 dollars per bottle of xyrem! that is ridiculous. jazz pharmacueticals patented a drug that's been around since 1874. for some reason they can just patent that and charge crazy amounts for it. strange. xyrem is keeping jazz pharmacueticals a float!

 

this makes me wonder how much it would cost to push through the hypocretin agonist trials? billions? millions? how many narcs are out there? obviously all narcs coming together and contributing would be next to impossible but it's a nice idea. i mean if people are paying 500 dollars per bottle!

 

if 1 in 2000 people are narcoleptic and there are 320 million people in america that makes around 160 000 narcoleptics in america. i don't know what the figures are but obviously that's wrong. this is just to gauge if something like this is possible and what it would require..

so how much are people paying per month on medication and health insurance combined? 300 dollars?

 

if say people are paying 300 dollars per month, that means narcoleptics in america pay around 48 million dollars per month on drugs. this brings me back to how much it would cost for hypocretin agonist to be pushed through.

 

PERSONALLY i think all activism and all effort should go to pushing through the hypocretin agonist. i've tried a load of different medications. started xyrem half a year ago. it's going alright. but not nearly as good as i thought ti would be. it eat low gluten, low dairy, exercise, don't drink, etc. but still feel pretty sh&*y. So i think the only thing that would make my life better is better drugs. it seems like a lot of narcoleptics are unhappy and make loads of sacrifices to still be unhappy. if we could just get a proper treatment maybe all these other lifestyle adjustments would be unnessecary. think loads of carbs whenever, going drinking whenever, not having to exercise just to have enough energy to get by. i mean that is what we should be striving for. all this activism. sorry but to me it's in vain. it's nothing. all energy should be put into pushing through this hypocretin agonist.

 

So does anyone think it is possible for a group of people with a condition to take initiative, form a group and push through a drug or atleast have some influence? this hypocretin agonist just needs funds. there are some smart narcoleptics out there (apparently george church is)? or are there any billionaire narcoleptics out there? but for real does anyone know how much it would cost to push through the hypocretin drug trials?



#30 ironhands

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Posted 04 October 2013 - 05:26 PM

if say people are paying 300 dollars per month, that means narcoleptics in america pay around 48 million dollars per month on drugs. this brings me back to how much it would cost for hypocretin agonist to be pushed through.

 

Depends on how much they'd get back on the investment.  Also keep in mind that not all PWN are on Xyrem.  

 

The most likely reason that an orexin agonist would be profitable, is if it could be used to treat other issues, which it may.  Particularly, depression and weight control.



#31 Potato

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Posted 04 October 2013 - 10:14 PM

I just wanted to say a few things about this Orexinal that's being mentioned: If you have narcolepsy with cataplexy, I can promise you it will do nothing. If you have narcolepsy or idiopathic hypersomnia, it will most likely still do nothing. Here's why: What they're selling is essentially a solution of amino acids in a spray bottle. You either consume in your diet or biosynthesize all these same chemicals inside your body. There is no orexin or any sort of pharmaceutical in the spray, just amino acids. They have some evidence that certain amino acid blends, in the absence of increased glucose levels, can depolarize orexin-secreting neurons. This means that they will fire at a lower threshold (i.e. more easily) in response to a stimulus.

 

However, the orexin neurons still have to be present and functional in order for this to have any impact whatsoever. In persons with narcolepsy and cataplexy, we know these neurons have been destroyed by an autoimmune process. As those neurons no longer exist they cannot be "improved." For instance, even if we had and administered an extremely potent orexin reuptake inhibitor to this group of people, they would show no response at all because they're not producing orexin in the first place.

 

In persons who still have functioning orexin-secreting neurons, we have to take the following into consideration:

 

First, yes, there is evidence that glucose inhibits orexin neurons, however glucose is only elevated in persons without diabetes for a few hours after a meal, and then it returns to its baseline value, which is very tightly controlled. As such, while preventing a spike in glucose after administration of a meal might help prevent post-meal sleepiness, it's not going to do anything in terms of long term energy and fatigue levels. Even if you ate zero sugars in your diet, the fats and proteins you ingest are still converted into glucose and used to maintain your baseline blood glucose level. A stable glucose level in the blood is absolutely necessary for sustaining life. There's no way around it. Not to mention allowing yourself to become hypoglycemic due to starvation or other circumstances would in fact make fatigue much worse.

 

Second, any enhancement in orexin activity is likely to be relatively modest compared to the overall dysregulation of wakefulness in persons with excessive daytime sleepiness. You could liken it to trying to treat major depression with tryptophan supplements. Sure, you might increase orexin levels a bit, but it's just not going to cut it. Consider the drugs people in our situation are taking: Extremely potent stimulants that would keep healthy individuals awake for two days straight. Antidepressants that are used in people with severe depression. Some of the most powerful street drugs, methamphetamine and GHB, adopted for our own purposes. -- And even then, many people are still sleepy!

 

I know many people are anxious to try new things because, let's face it, the existing solutions are not anywhere near perfect. But from what I can tell, knocking back one or two of those "energy shots" would do more for you than squirting this stuff up your nose. Unless you really have money to burn, pass on this one.



#32 Potato

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Posted 04 October 2013 - 10:36 PM

500 dollars per bottle of xyrem! that is ridiculous. jazz pharmacueticals patented a drug that's been around since 1874. for some reason they can just patent that and charge crazy amounts for it. strange. xyrem is keeping jazz pharmacueticals a float!

 

If you are low income, Jazz Pharma does have a PAP (Patient Assistance Program) for Xyrem. See http://www.jazzpharm...ent-assistance/ -- You'd probably have to call them for more details.

 

And they didn't "just patent a drug." For one, it's a salt of GHB, not GHB itself. They had to employ and pay people to research the drug, which is perhaps the most difficult part of the whole process and includes runing trials with animal models. They had to recruit people for their clinical trials. They had to carry out their clinical trials, including providing medical care and perhaps other benefits to those in the trial itself. They had to pay for the drug to be reviewed and approved. They had to pay costs to get a manufacturing process designed and a plant designed to manufacture the drug. -- My point is there's a lot more to the process than you think. And all this for a drug that is prescribed to a relatively small number of people. Plus, they have to also have a profit margin to provide funds for future research and development of additional drugs.

 

Orphan drugs like Xyrem are typically very costly. However, in cases such as Xyrem where there is no generic, it's common to offer a PAP to help people afford the medication. As I said, Jazz Pharma does have one, and according to Wikipedia "the manufacturer offers a Patient Assistance Program to patients that do not have insurance and are unable to afford their Xyrem prescription. Approximately 8% of Xyrem patients currently participate in this program and receive their prescription for free." Source: https://en.wikipedia.org/wiki/Xyrem



#33 Chippervan

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Posted 05 October 2013 - 04:35 AM

And all this for a drug that is prescribed to a relatively small number of people. 

 I hardly feel sorry for jazz. Chemist. Come on. They are raking it in on xyrem. Don't deny that. I was just using xyrem as an example anyway. That wasn't my point.

 

 

Narcoleptics pay a lot every month on medication. If this hypocretin agonist came out I think it is fair to say that the majority of narcoleptics would be on that. I was just thinking is it possible to form a group that could influence the development of hypocretin agonist. LIke maybe if some fund is made and narcoleptics can put money in the fund and the money they put in they get back once the drug is developed. Like an investment. Why wait for pharmacuetical companies to decide what to invest in.

 

Another route would be to fund research in finding out what hypocretin does, in a hope that it influences lots of different things so that the potential market would increase.

 

SO if narcoleptics are paying high fees every month for medication that doesn't work properly, maybe they would be willing to add a little to a fund that could influence the development of a proper treatment. not sure how this would work but i do think it could.



#34 ironhands

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Posted 05 October 2013 - 09:59 AM

They're not going to do it.  Drug companies don't want to do something unless it's very profitable, that's why I said it'd be better off to see how orexin can be used to treat other problems, increasing the market, which would lower the cost, and increase the profit at the same time.  It can certainly aid in depression and food regulation.



#35 Potato

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Posted 05 October 2013 - 01:09 PM

Chippervan, I'm not asking you to feel sorry for Jazz Pharma, they're doing fine. I'm simply explaining why it might be a bit misguided to be angry with them. I still think you're not fully understanding how much drug development costs. It's anywhere from $500 million to $2 billion dollars. I highly doubt narcoleptics would be able to pull off a grassroots movement to come up with those kind of funds, especially since 1) they would still all have to be paying their usual costs while they waited for the drug to be developed and 2) it's not unusual for it to take a full ten years to bring a new drug to the market.

 

What you're talking about, better understanding the nature of hypocretin, is closer to what we call basic or pure research. This kind of research is typically carried out by research universities or by government research facilities rather than pharmaceutical companies. In this setting, the issue is less with funding and more with simply having enough researchers who are interested in working on the problem. Researchers at universities typically want to research what interests them most, they then write grant proposals and receive funding for their work. Given the fact that there's still a lot left to learn about hypocretin/orexin, getting funding shouldn't be too difficult. However, relative to other areas of research like the role of dopamine and glutamate in schizophrenia, comparitively fewer researchers are interested in or working on hypocretin/orexin right now.



#36 IdiopathicHypersomniac

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Posted 05 October 2013 - 01:44 PM

Chemist -- you could probably make GHB yourself using GBL, sodium hydroxide, and potassium hydroxide.  Any high school chemistry student can make it at home.  Jazz is still overcharging for this drug.  9g per night costs $2,250 in Canada, and over $7,000 in the US.  Why the difference?  Because Canada regulates the industry to prevent pharma gouging.

 

Why is there no protocol to test this drug for patients where they can be monitored? ... ie., in a hospital?  Instead, patients are given a very dangerous drug to try at home, which could potentially kill them.  There is something very wrong with this picture.

 

As for orexin, as I have said a million times before, there's more to it than that.  Orexin had no effect when it was infused into animals that were well rested.  The EDS from Narcolepsy stems from poor sleep architecture.  Orexin may play a role in sleep architecture, but there are still a lot of unknowns.  Orexin infusion in non-rested animals had all the same negative side effects of amphetamines.



#37 Potato

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Posted 06 October 2013 - 11:50 AM

Well quite frankly that's just not true. Where are you going to even acquire GBL, considering it's a restricted substance in the United States? Once you have it, how will you know it is in fact GBL and not some other compound? How will you test its purity? Once you've synthesised your product, how are you going to ensure no side reactions took place and that the product itself is pure? High school chemistry won't teach you how to do these things.

 

Personally, I could confidently synthesize and purify sodium oxybate, along with many other drugs. I also know how to ensure I've made the correct compounds. And it would be cheap, assuming I could get access to starting materials. It would still be illegal, though. Plus, just because you can produce something cheaply doesn't mean it should be sold cheaply. As I said repeatedly, there is more costs associated with drug manufacturing than just the cost of starting materials.

 

And I'm probably wasting my breath saying this again, but Jazz Pharma does have a PAP for Xyrem, and many patients do get the drug for FREE because they couldn't otherwise afford it or it would be too much of a financial hardship. All you have to do is pick up the phone and start the process. It's really not that difficult.



#38 Chippervan

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Posted 06 October 2013 - 12:05 PM

chemist do you work for Jazz pharma? you'd be a good PR



#39 ironhands

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Posted 06 October 2013 - 12:12 PM

chemist do you work for Jazz pharma? you'd be a good PR

 

The statement remains true.  I doubt anyone pays 100% cash for it; it's either given to them free by Jazz, or it's covered by an insurance plan.  I also highly doubt that making Xyrem is really that profitable, considering how many either get it free, or PWN who don't take it.. but that's the problem of a specialty drug.  



#40 Ferret

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Posted 06 October 2013 - 01:37 PM

Chippervan, are you just located in Ireland? an Irish citizen? or an American living in Ireland?

I am asking because of this...

http://en.wikipedia....blic_of_Ireland

 

Americans living in America should be outraged at what they pay for medicines.

Narcoleptics, in general, should be happy they have choices in meds at all considering the small percentage of the general population that they represent. This has not always been the case. Meds cost huge bucks to bring to trial as already pointed out to you.

Why so snarky?