Brivaracetam — KV3.1 Modulator

[Danny Boy]

@Danny Boy Is it out yet???

Should be out soonish.

 

[linearb]

Should be out soonish.

oh boy! Then we can all sign up to take dangerous drugs that almost certainly won't help us.

 

[Danny Boy]

oh boy! Then we can all sign up to take dangerous drugs that almost certainly won't help us.

Tell that to people who have epilepsy, who have to take these drugs for their entire lives.

 

[linearb]

Tell that to people who have epilepsy, who have to take these drugs for their entire lives.

So... what? What's the connection? Yeah, these are epilepsy drugs, they have been developed with that in mind, tested with that in mind -- and unlike tinnitus, epilepsy can kill you, so the risk:reward math is completely different. Tinnitus is not a seizure disorder.

Look at cisplatin -- here is a drug that definitely kills your cochlea, anyone who takes it is guaranteed to get severe hearing loss and probably tinnitus. Would anyone on this forum in their right mind take it? Well, no, not unless they had cancer that was going to kill them otherwise, because it's a chemotherapy drug.

This thread represents the worst, most reckless thinking that I've seen on this forum, and the fact that it continues to be in the "treatments" forum is ridiculous.

I get that desperation makes people do crazy things, but when you start messing around with extremely potent novel molecules that have only existed for a few years and have basically unknown long-term effects, the risk of ending up in a worse place than you started out just gets bigger and bigger.

 

[Danny Boy]

So... what? What's the connection? Yeah, these are epilepsy drugs, they have been developed with that in mind, tested with that in mind -- and unlike tinnitus, epilepsy can kill you, so the risk:reward math is completely different. Tinnitus is not a seizure disorder.

Look at cisplatin -- here is a drug that definitely kills your cochlea, anyone who takes it is guaranteed to get severe hearing loss and probably tinnitus. Would anyone on this forum in their right mind take it? Well, no, not unless they had cancer that was going to kill them otherwise, because it's a chemotherapy drug.

This thread represents the worst, most reckless thinking that I've seen on this forum, and the fact that it continues to be in the "treatments" forum is ridiculous.

I get that desperation makes people do crazy things, but when you start messing around with extremely potent novel molecules that have only existed for a few years and have basically unknown long-term effects, the risk of ending up in a worse place than you started out just gets bigger and bigger.

Hm, tinnitus can also kill you, if you have it bad enough. Nobody is forcing drugs on anyone. Also, this has been in trials for over 8 years and thus has been tested for safety. Anyway, trobalt is far more reckless than this. Also, nobody here would take cisplatin, even if they had cancer, because being deaf with tinnitus is just yes...Hell.

 

[linearb]

Yes, in trials for 8 years, for conditions which have absolutely nothing to do with tinnitus.

I'm glad that you think an analog of this drug was helpful in your particular case, but that doesn't mean that it actually was.

No one has ever died from tinnitus. People have committed suicide as a result of untreated anxiety and depression which they experienced as a result of their tinnitus. And, you're talking about the worst 0.01% of tinnitus patients; that's not likely to be a useful or helpful metaphor for the other 99% of people.

I absolutely believe that these drugs might interact with the parts of the brain involved in tinnitus, and I think this makes them more dangerous, because until we understand how that interaction works, and develop safe and appropriate protocols, there is a non-zero chance of these drugs actually making the condition worse.

I know that you do not believe Keppra is dangerous based on your personal experience with it, but, that's just one experience. There are an absolute wealth of case studies available where people have had severe, disabling reactions to Keppra and been messed up for a long time as a result.

http://www.ncbi.nlm.nih.gov/pubmed/14741183

RESULTS:
Fifteen patients (12.7%) experienced PAEs during LEV therapy. Two (1.7%) developed an affective disorder, nine (7.6%) aggressive behaviour, two (1.7%) emotion lability and two (1.7%) other personality changes such as agitation, anger and hostile behaviour. We observed a significant association with a previous history of status epilepticus and a previous psychiatric history. We did not find a statistically significant association with epilepsy diagnosis, age at onset or duration of the epilepsy, EEG or MRI features. The titration schedule of LEV appeared not to be relevant.

1 in 12 chance of aggressive behavioral changes? Safe?

http://www.drugs.com/sfx/keppra-side-effects.html

Common side effects of Keppra include infection, psychoneurosis, drowsiness, weakness, nervousness, headache, nasopharyngitis, apathy, hyperkinesia, abnormal behavior, hostility, anxiety, depersonalization, depression, agitation, aggressive behavior, fatigue, personality disorder, mood changes, emotional lability, laceration, and irritability. Other side effects include tonic-clonic seizures, dizziness, vertigo, depressed mood, decreased neutrophils, neck pain, and pain.

http://www.sciencedirect.com/science/article/pii/S1059131107001288

Adverse events led to drug discontinuation in... 6.0% of LEV-treated patients

So, considering the population of people disabled by epilepsy, 1 in 20 of them elected to stop taking Keppra because of side effects.

I will spare you the horrifying anecdotal stories of people freaking out and battering their spouses and stuff, because, again, I'm more concerned with clinical data than random anecdotes.

I didn't say anyone was forcing anyone to take any drug. But, this is a forum read by desperate people who want very badly to find a way to feel better. I think having completely unproven drugs thrown around in glowing terms is dangerous. So, you are free to express your point of view, I am free to express mine, and random readers from the internet can hopefully draw their own conclusions and make reasonable decisions for themselves.

 

[linearb]

Note: having this thread in "research news" feels much more appropriate to me, and this removes much of my vitriol.

 

[Danny Boy]

Yes, in trials for 8 years, for conditions which have absolutely nothing to do with tinnitus.

I'm glad that you think an analog of this drug was helpful in your particular case, but that doesn't mean that it actually was.

No one has ever died from tinnitus. People have committed suicide as a result of untreated anxiety and depression which they experienced as a result of their tinnitus. And, you're talking about the worst 0.01% of tinnitus patients; that's not likely to be a useful or helpful metaphor for the other 99% of people.

I absolutely believe that these drugs might interact with the parts of the brain involved in tinnitus, and I think this makes them more dangerous, because until we understand how that interaction works, and develop safe and appropriate protocols, there is a non-zero chance of these drugs actually making the condition worse.

I know that you do not believe Keppra is dangerous based on your personal experience with it, but, that's just one experience. There are an absolute wealth of case studies available where people have had severe, disabling reactions to Keppra and been messed up for a long time as a result.

http://www.ncbi.nlm.nih.gov/pubmed/14741183

1 in 12 chance of aggressive behavioral changes? Safe?

http://www.drugs.com/sfx/keppra-side-effects.html


http://www.sciencedirect.com/science/article/pii/S1059131107001288


So, considering the population of people disabled by epilepsy, 1 in 20 of them elected to stop taking Keppra because of side effects.

I will spare you the horrifying anecdotal stories of people freaking out and battering their spouses and stuff, because, again, I'm more concerned with clinical data than random anecdotes.

I didn't say anyone was forcing anyone to take any drug. But, this is a forum read by desperate people who want very badly to find a way to feel better. I think having completely unproven drugs thrown around in glowing terms is dangerous. So, you are free to express your point of view, I am free to express mine, and random readers from the internet can hopefully draw their own conclusions and make reasonable decisions for themselves.

There's no point in arguing, neither of us is about to change our mind. I take these drugs, so I can have a reduction to live. I don't want to kill myself. Thus, if mine goes back to 10/10 that's my life over. I don't know if you ever had it that bad, but I have...So I guess I'm the 0.1% you speak of. Anyway, luckily I'm ok at the moment.

People will make up their own minds about these drugs as they can read about the side-effects quite easily, it's even in the box.

 

[linearb]

There's no point in arguing, neither of us is about to change our mind. I take these drugs, so I can have a reduction to live. I don't want to kill myself. Thus, if mine goes back to 10/10 that's my life over. .

There was a time that I felt the same way, so, I know where you are coming from.

 

[Kane Moffat]

@dannyboy, 'soonish' in drug trial terms or 'soonish' in normal terms, like by the end of the year? It's incredible how long it takes for a drug to be approved, 8 years is such a long time, it's maddening don't you think?

 

[Zechariah]

@dannyboy, 'soonish' in drug trial terms or 'soonish' in normal terms, like by the end of the year? It's incredible how long it takes for a drug to be approved, 8 years is such a long time, it's maddening don't you think?

My guess is that it will be available in some countries at H1 of this year. It's not officially approved yet but I think that approval is almost certain at this point unless something big comes up.

http://www.ucb.com/presscenter/News...ew-drug-brivaracetam-for-people-with-epilepsy

And could someone fix the title. Since Brivaracetam isn't Kv3.1 modulator.

"Brivaracetam is a selective synaptic vesicle protein 2A ligand."

 

[Philip]

I personally feel for you guys with 10/10 level tinnitus.

In the three years I've had this horrible problem I've had a few spikes where if they had of continued I'd have lost my mind and I wouldn't like to think how that story would have ended.

Epileptic type drugs can, in the short term, reduce tinnitus but there is often a rebound when you stop taking them.

Phenibut and Gabapentin are very nice as a once off aid but don't take them them for a few days or you'll be in a much worse tinnitus hole than you started off in

That's why I worry about any medical aid, unless they find a way to reboot the ear nerve I feel that any drug will only have short term benefits.

 

[muaythai]

brivaracetam development
http://www.ucb.com/investors/UCB-tomorrow/brivaracetam
epilepsy - adj. therapy POS EU
approval (Jan 2016)
Launch (Q1 2016)

brivaracetam will be launched soon, but there arent any evidence that it could stop or relieve tinnitus or KV modulator that works the same as trobalt, SF or levetiracetam.
i am currently taking levetiracetam ( off label) spontaneously when my tinnitus could be hear even in noisy environment, it helps a bit, my spiky tinnitus soften, while it doesn't stop my consistent tinnitus that exists in quite environment ( midnight at room).

 

[monacco]

As trobalt works on me and if really brivaracetam is more potent and less dangerous than trobalt I will take it every day, awesome

 

[monacco]

It will be launched befor the end of march 2016
http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=4763

 

[Steve Hubert]

I posted this question on another thread, but, it appears that Briviact is an IV solution. Hopefully, there is an oral med as well.
https://www.medicines.org.uk/emc/medicine/31457

 

[Jahhsoul]

@Danny Boy you said that Brivaracetam is more potent and safe than Trobalt. More safe its sure, but more potent? I understood that Trobalt act on Kv7 (KCNQ2/3) channels, which are in the DCN and it helps to prevent T since they activate them, and maybe desactivate the HCN channels (they seems to be more active after acoustic-trauma).

Anyone knows the relation between T and Kv3.1, I didint read anything in previous post, just read it can reduce the activity in auditory cortex neurons. Aut0063 works on Kv3.1 channels too?

Anyway it´s a very good new.

 

[skoupidis]

I don't understand you people still taking example of Aut0063 that failed trials...

 

[lapidus]

@Danny Boy you said that Brivaracetam is more potent and safe than Trobalt. More safe its sure, but more potent? I understood that Trobalt act on Kv7

Yeah, you're mixing up Trobalt with Keppra. Brivaracetam is more potent than Keppra. Trobalt has nothing to do with this.

 

[Jahhsoul]

I don't understand you people still taking example of Aut0063 that failed trials...

Well, if AUT0063 fails in phase I then I agree with you, but it failed in phase II due to lack of efficacy. That is a really bad new for Brivaracetam for T since it should be very very much potent because they act on same channels. Anyone knows how much more powerful it is?

 

[undecided]

Brivaracetam does not act on the same channels as AUT or Trobalt.
Read @lapidus reply above.

Also, nobody knows how "powerful" it is, since it's not even out on the market yet.

 

[Jahhsoul]

Brivaracetam does not act on the same channels as AUT or Trobalt.
Read @lapidus reply above.

Also, nobody knows how "powerful" it is, since it's not even out on the market yet.

Oh sorry you are right, I though Brivaracetam act on Kv3.1 channels, but I was wrong: "Brivaracetam (UCB34714) is a novel high-affinity synaptic vesicle protein 2A (SV2A) ligand."

About the potency, it should appear on the clinical studies.

So... Anyone knows the relation between T and SV2A?

PD: Edit the title if Brivaracetam doesnt act on KV3.1 channels.

 

[Philip]

This thread smells of total nonsense.

The wholesale speculation on how this drug works in the brain, its potency compared to trobalt etc is so misleading I fear how it could influence some very desperate person in their first year of tinnitus.

The ethos of what I'm hearing here is akin to bluelight.

We all have tinnitus, some worse than others. But take a deep breath and take the time to find some good supporting links before anyone posts mere idle speculation.

I don't wanna come as a downer but please keep this in the bounds of reality ladies and gentleman.

 

[preslys]

£5-a-day tablet 'a game-changer' in epilepsy treatment: New pill that reduces risk of fatals seizures welcomed by experts... and it's available on the NHS

Give it a try

http://www.dailymail.co.uk/health/a...k-fatals-seizures-welcomed-experts-s-NHS.html

 

[Silvio Sabo]

£5-a-day tablet 'a game-changer' in epilepsy treatment: New pill that reduces risk of fatals seizures welcomed by experts... and it's available on the NHS

Give it a try

http://www.dailymail.co.uk/health/a...k-fatals-seizures-welcomed-experts-s-NHS.html

First of all we have to change the name of the thread since it's clearly not a Kv.3.1 modulator!

 

[Mithrandir]

Is that function for T/H ? What is the MOA to say that ?

 

[medal]

Anyone already trying this? Would be amazed if this acts on the kv3.1 channel. This is based on the research paper @Danny Boy has shared with us stating kv3.1 and levetiracetam or not?

 

[Danny Boy]

Anyone already trying this? Would be amazed if this acts on the kv3.1 channel. This is based on the research paper @Danny Boy has shared with us stating kv3.1 and levetiracetam or not?

It's not working on KV3.1, sadly.

 

[Kyxwz]

Anyone have try this?

 

[Poyraz]

I also wonder if it is out yet and anyone tried this?