Glyx-13 Discussion (Top voted first)

There seems to be some demand for a GLYX-13 discussion (now known as Rapastinel) so I would like to start one here.

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REPORT

Still in the open label extension study and still doing fairly well. This is the first time any medications seems to be helping me. The oral version is in metabolizing studies for healthy individuals now. I will post information as I learn about it.

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Yes, I just completed participating in the GLYX-13 Phase IIc study. I received the therapeutic dose each week for 7 weeks. Then, beginning with week 8, I was selected (double blind) to go through a phased withdrawal for the remaining 10 weeks (the study lasted a total of 17 weeks). The withdrawal phase involved receiving 1 therapeutic dose the first week, then skipping 2 doses over the next 2 weeks (placebo). I withdrew from the study after week 15 because I couldn't take the severe headaches that were seemingly caused by the on-again/off-again regimen.
The first 7 weeks were remarkable, in that I seemed to completely lose the depression. After 6 weeks after leaving the study, I'm still in what I would call "remission". The following 5 weeks during withdrawal however, were pure hell.

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This is incredible. This same group of people that bounce from the ketamine forum to the glyx-13 forum. We must all have the same genetic abnormality that presumably is a glutamate dysfunction. For what it's worth I'll share my cocktail if it's helpful to anyone else. I'm also anxiously awaiting glyx-13 availability. Everybody's dose is going to be a function of their own biology so I'll just post the agents. It would be very interesting to see how many of us are on similar therapies and try to pinpoint the ones most effective. It doesn't seem at this point that I can get along without anyone of them and together there is only a partial response but it keeps me alive. Thank G-d.

1. riluzole
2. venlefaxine
3. omega 3 Mood Formula (country life)
4. lorazepam (don't know how necessary it is for the depression but I do know there is an addiction at this point and I simply am not at the point where I can start to modulate this)

I really hope to G-d that all of those who are suffering will have their suffering eliminated. There are no words to describe the pain and dysfunction of this disease.

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Yeah, the waiting is maddening, but if they got fast track approval from the FDA, that's a good sign that it's going to happen eventually.

I have a feeling that we won't see the open label study starting before the summer, though. Who knows why these things take as long as they do; we just have to be patient (which is hard when you desperately want to feel better, I know).

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citygirl,

Good luck, and please keep us posted. I'm from New York originally, and I remember how tough winter can be in that part of the country.

I started taking a new a/d, Brintellix, in June. I've been tapering up very slowly, and I'm still not at a therapeutic dose, but it does seem to be helping. There are side effects, but for now they seem to be outweighed by the benefits of the drug.

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Same here and I'm unable to think of anything else but the possibility that this will help me - after being on SSRIs since they came on the market I no longer feel any help from any of them and am beginning to get more and more down..

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I am still in the GLYX-13 study. I'd say my mood is about a 6 with 10 being the best. That's a great improvement over the 3 or less I was at. But, I'd really love to remember what 8 feels like. The pill form is reportedly in safety studies now.

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I am holding steady. I have been in this"extension" safety study for over a year.

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@Jenna, excellent synopsis, I have collected a huge file of articles, trials, etc.. All concurs. I wrote an email to Joe Moskal from an article re: Naurex and INOV @ No. Western, asking him for information about similar drugs, like Namenda, in regard to the possibility of getting some relief until it becomes available, which appears to be along way off...also any possible supplements affecting NMDA receptor, the Glutamate system and Glycine. As it appears it affects memory loss and the diseases associated with it. This has been in research 26 years. Ketamine since 1996. It is available, however the doses are minuscule compared to what they are using...

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Blueheelercd,

Btw, infusion because sponsor supposedly tried pill form, and it wasn't as effective.

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Dear All - There's been some discussion on this thread about FDA-APPROVED drugs that are NMDA receptor antagonists (i.e. same class as ketamine, and related to experimental drugs like GLYX-13). One of these approved drugs is Namenda, aka memantine, an Alzheimer's drug that is also being studied off-label for use in migraines, depression and anxiety (among other things, but those are the 3 from which I suffer the most). Anyway my neuro gave me a sample pack yesterday!! so I have started down the Namenda path. The pack is a month's worth so I can't say I've noticed anything yet, in fact I've had 2 migraines since starting it yesterday, but that could be the horrible hot and humid weather we're having in the Chicago area right now. At least I'm hoping it's the weather, because I'll be very disappointed if Namenda turns out to be a freaking migraine trigger for me. Anyway I'll keep posting about this drug if folks are interested. It is a legal drug, available by prescription, and as has been mentioned previously I think works on the glutamatergic system, instead of serotonin like most current ADs. All SSRIs and SNRIs are migraine triggers for me, so this new approach could be a breakthrough for some of us, maybe a lot of us. Best wishes to all :)

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Oh, and I've been told the open label study for glyx-13 is expected to start in Feb. 2014 and continue until FDA approval.

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I just had my 2nd dose of Glyx=13 in a study in Princeton New Jersey. I felt better immediately after each dose but it kind of faded. I think this is because I have let aspects of my life go and was confronted with that while in a better mood.

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STLKET,

You're right, it's hard to explain, especially to anyone who's never been a sufferer.

If I had to describe it, I'd say it was like a rip current of fatigue and apathy that's constantly trying to pull me under.

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Naurex's website says the phase III trial of glyx-13 won't start until 2015.

Phase 2a trial of NRX-1074 is supposed to be starting now, though. No cities listed for that one yet, unfortunately. I'm trying to find out if there will be a study site in southern California.

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I have not felt a drastic change but am feeling a bit better than I was a few weeks ago. If I feel like this through the winter, THAT would be miracle enough. Winter is terribly bad for me. Here's hoping! I will take any improvement.

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I will ask on Wednesday when I get my infusion but I don't expect a clear answer;-) The "extension" study I am in in reportedly going to run for 4 years or until approval, if that says anything. I believe they are working on an oral version so perhaps more studies will open there as well. I have been getting 10mg/kilo IV I fusion weekly. I started feeling 10-15 percent better at about week 6, which is longer than the majority who feel better within hours. I don't know if the drug is helping but if I maintain even this much improvement through Feb/March, I will be grateful.

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Thank you for keeping us posted. I have really high hopes for this medication. Everything else I've tried has either pooped out or been sub par to no effect at all. Knowing this med is out there being tested gives me hope.

Best to you

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Great! Do u need me to help notify everyone who has written about it? Especially because two people are currently in studies!

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Yeah that would be great, the link to here is posted in the other thread but if you have a way to get ahold of them that would be good.

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