Retigabine (Trobalt, Potiga) — General Discussion

[linearb]

GSK would probably be happier than a pig in poop to see this thread. It's a super expensive drug that they control the entire supply to. Drug companies are all about off-label use; pretty sure GSK specifically has been sued several times over off-label overuse.

 

[dan]

GSK would probably be happier than a pig in poop to see this thread. It's a super expensive drug that they control the entire supply to. Drug companies are all about off-label use; pretty sure GSK specifically has been sued several times over off-label overuse.

In the least i think their research department should be made aware of our little unofficial, non-placebo controlled trial going on! -and the pretty darn amazing results.

 

[Hengist]

GSK would probably be happier than a pig in poop to see this thread. It's a super expensive drug that they control the entire supply to. Drug companies are all about off-label use; pretty sure GSK specifically has been sued several times over off-label overuse.

It is not super expensive, it is medium expensive and I am saying this because my medical covered my testosterone replacement therapy, and I planned to have some chemotherapy but in the end did not get approval. If you compare prices of generic hormone replacements etc you will find that retigabine which a company has a monopoly on is actually quite acceptable and non-greedy.

 

[Zimichael]

Hey guys...your enthusiasm is great, but I would not jump to assumptions about what GSK (and other parties) may think of this trial or thread. If I was into T research I would have a snoop on here anyway as it's a fantastic resource and "look see what's happening" place.
My "sense" is, just keep this in house for now. Be patient. If really keen to jump around get that scrip and try it then see where you stand.
Let's not rock the boat too much...I have been around the block for a while and that is my gut feeling. Yeah not "scientific" I know, but it is what it is.

Best, Zimichael

 

[dan]

Its not super expensive in Europe, but in the USA it costs 10x what it costs in EU.

 

[dan]

Hey guys...your enthusiasm is great, but I would not jump to assumptions about what GSK (and other parties) may think of this trial or thread. If I was into T research I would have a snoop on here anyway as it's a fantastic resource and "look see what's happening" place.
My "sense" is, just keep this in house for now. Be patient. If really keen to jump around get that scrip and try it then see where you stand.
Let's not rock the boat too much...I have been around the block for a while and that is my gut feeling. Yeah not "scientific" I know, but it is what it is.

Best, Zimichael

Sorry mate, but I tend to disagree with your opinion on this.
We've kept tinnitus "in the house" for way too long. So its always a good idea to share information. It is obvious that this drug has a positive effect on tinnitus and as more people try it, it will become even clearer.
About the "keen" T researcher, I think you overestimate their agenda to check tinnitus boards lol. So I stand by my view to increase awareness at any possibility.

 

[Martin69]

Would be good if forum members from UK try getting into the Autofony trial.
Seems it is only done there.

Although things look promising here, we still only have one person (mpt) who seems cured. Maybe it would be gone for him anyway. I don't want to be too negative (we all need hope), but would be good seeing more results from other members. I do not really believe in the wonder pill healing all kinds of tinnitus. Unfortunately I cannot get Trobalt in Germany.

 

[Martin69]

Sorry mate, but I tend to disagree with your opinion on this.
We've kept tinnitus "in the house" for way too long. So its always a good idea to share information. It is obvious that this drug has a positive effect on tinnitus and as more people try it, it will become even clearer.
About the "keen" T researcher, I think you overestimate their agenda to check tinnitus boards lol. So I stand by my view to increase awareness at any possibility.

Agreed. If someone will become aware or find a drug decreasing or eliminating T, this will be the cash cow for the next years. So they will put much more investments into this.

 

[James White]

Would be good if forum members from UK try getting into the Autofony trial.
Seems it is only done there.

Although things look promising here, we still only have one person (mpt) who seems cured. Maybe it would be gone for him anyway. I don't want to be too negative (we all need hope), but would be good seeing more results from other members. I do not really believe in the wonder pill healing all kinds of tinnitus. Unfortunately I cannot get Trobalt in Germany.

Don't forget this pill has got the interest of University of Pittsburg who are trying to modify it to lessen the side effects

 

[Martin69]

Don't forget this pill has got the interest of University of Pittsburg who are trying to modify it to lessen the side effects

But do they rate it as an epilepsy drug or do they know about a possible treatment for T?

 

[James White]

But do they rate it as an epilepsy drug or do they know about a possible treatment for T?

it's the tinnitus department who are looking into it Dr Thanos Tzounopoulos

http://www.sciencedaily.com/releases/2013/05/130527153701.htm

i'm saying this because i first thought Mpt found this drug randomly

 

[Martin69]

it's the tinnitus department who are looking into it Dr Thanos Tzounopoulos

http://www.sciencedaily.com/releases/2013/05/130527153701.htm

i'm saying this because i first thought Mpt found this drug randomly

Interesting article. Is the Autifony drug based on this experiment?
Mine is not noise-induced, but this was already discussed here and benryu commented this.

 

[valeri]

The reality is that many other conditions got helped by taking drugs for something different.

So personally I think that this should be passed onto relevant people.

This is big, even though only a handful of people tried it, it's probably the first time that some drug has given any results.
Why wait?

Where is @benryu?

Maybe he knows the way to do it!

 

[Markku]

Where is @benryu?

Away on vacation for much of the September, I seem to recall.

 

[valeri]

Is GSK in Australia?

If it is I can call today and ask few questions if you guys think I should.

At least to make them aware of the results people on this board had so far!

What are the thoughts?

 

[lapidus]

it's the tinnitus department who are looking into it Dr Thanos Tzounopoulos

http://www.sciencedaily.com/releases/2013/05/130527153701.htm

i'm saying this because i first thought Mpt found this drug randomly

"The KCNQ family is composed of five different subunits, four of which are sensitive to retigabine. He and his collaborators aim to develop a drug that is specific for the two KCNQ subunits involved in tinnitus to minimize the potential for side effects"

Isnt this what Autofony are doing too (and probably Auris with AM-102)?

And the Pittsburgh guys are also talking about "preventing". I'm getting frustrated with this acute/chronic bullshit. I know that Benryu has explained that it shouldnt matter but as a natural born pessimist I just can't be too hopeful.

 

[Jay M]

Hey guys...your enthusiasm is great, but I would not jump to assumptions about what GSK (and other parties) may think of this trial or thread. If I was into T research I would have a snoop on here anyway as it's a fantastic resource and "look see what's happening" place.
My "sense" is, just keep this in house for now. Be patient. If really keen to jump around get that scrip and try it then see where you stand.
Let's not rock the boat too much...I have been around the block for a while and that is my gut feeling. Yeah not "scientific" I know, but it is what it is.

Best, Zimichael

When do you think you'll start?

 

[mmacabre]

You all should definitely NOT contact GSK, as there is a possibility that if they are aware that retigabine is being used off label for treatment of tinnitus, that in light of having lost billions of dollars due to lawsuits regarding off label prescriptions in the past, they might try to more specifically restrict retigabine to those who are using it as adjunct epilepsy treatment, especially in light of the black box warnings this thing has. Or at least hold off on contacting them until we really choose our words carefully. We'd want their chemists and researchers to know, not their lawyers

 

[bedouin]

You all should definitely NOT contact GSK, as there is a possibility that if they are aware that retigabine is being used off label for treatment of tinnitus, that in light of having lost billions of dollars due to lawsuits regarding off label prescriptions in the past, they might try to more specifically restrict retigabine to those who are using it as adjunct epilepsy treatment, especially in light of the black box warnings this thing has. Or at least hold off on contacting them until we really choose our words carefully. We'd want their chemists and researchers to know, not their lawyers

I wouldn't let GSK know just yet. They could put a stop to this informal trial if they take it off the shelves, for whatever reason. I have to agree with what some people are saying on here and it must be a well thought out decision before we contact them.

It would be a real blow if from our over-enthusiasm to tell the world, we removed immediate "hope" for those wanting to start dosing, as well as those currently on it. Mpt for one would be well pissed off, if it affected his current access. It also puts a stop to any further results for the rest of us to consider. I don't trust big pharma. I'm not saying they will but they could remove it from shelves, even if temporarily, if they viewed it in any way as threatening.

Research is being done maybe just not as quickly as we like. But lets not shoot this one (and only for now) chance in the foot straight out of the gates. I vote for keeping it under wraps until be get more people posting solid +ve results.

 

[rtwombly]

GSK is probably receptive to hearing good news about retigabine, after the disappointments it has had as an epilepsy treatment. But I agree, discretion is the better part of valor.

Based on that article from loyceti and Dr. Charles Large's involvement in the retigabine clinical trials, it appears what we've done here is uncover a direct lineage: flupirtine -> retigabine -> AUT00063. They started with a drug that was novel in its effect but too narrow to work like they wanted it too, invented a drug that is a bit too broad, and are developing one they hope will be just right. Dr. Large and Dr. Tzounopoulos must certainly be aware of each other's work. What we're watching here is a slow-and-steady race to GET IT RIGHT. We could end up with two drugs that can be taken in parallel, one to affect Kv3 and one for Kv7.4. I wonder if a drug could safely target Kv7.1 without adversely affecting heart rhythms.

 

[Hudson]

I wouldn't worry about our secrecy. Lawyers and tinnitus researchers from various organizations are more than likely already aware if this.

 

[valeri]

Ok then, let's leave it for now!

Are there any more members who are likely to try this drug?

 

[Champ]

This may be one of the first examples of a community based research effort I've ever seen. We're all trying to figure out if this thing has potential to help a lot of people This is so cool

 

[dan]

Ok then, let's leave it for now!

Are there any more members who are likely to try this drug?

Probably ...

 

[jazz]

Don't know if they are also working on the T aspect of this drug.

Yes, they want a version of Retigabine that minimizes side effects. It will be for people with tinnitus.

 

[Viking]

Here it is doing the story. I hope to meet you all one day!

 

[SoulStation]

I think it's very sensible of you. Do we really expect bladder problems would continue after cessation of use? I don't think I've seen that noted anywhere.

Was the flexeril for your tinnitus as well? I've had stiffness in my neck pretty much since it set in for me, though I'm not sure it's a new symptom. My chiropractor said they look for three things as a source of muscle tension, the three "t"s: Trauma, Toxins, and Thoughts. My theory is that tinnitus is acting like a toxin for me, that I'm tensing up in response to it subconsciously. Maybe that's thoughts, I dunno.[/

Yes, they want a version of Retigabine that minimizes side effects. It will be for people with tinnitus.

Hey jazz I apologize if you are referring to aut63 but did you find this some where?
Interestingly in my OCD never ending google quest to try to find out more out retigabine I found this in regards to an active study scheduled to end this month on Retigabine's potential for causing urinary retention:
http://www.clinicaltrials.gov/ct2/show/NCT01462656?term=Urinary retention&rank=6
Ps @rtwombly yes the flexeril was for my T but proved to be inconsistent.

 

[Zimichael]

Geeez Louise... Now we are going to have @benryu come back on and say again: "Wow, I have been off this thread for a few days and it's like war here. *__*" Ha ha...The skiver is on some beach in Hawaii no doubt contemplating the neurological structure of his navel. (Well deserved!)

So on this: "Tell the world. Tell GSK now" thing...The numerous viewpoints have been well expressed up above and I promise to drop it after this.

OK, I'm on the cautious side because I happen to be more concerned about GSK putting out some kind of flash warning to doctors or pharmacies to limit the use of Potiga in some way. Now I know this is counter-intuitive, and it may be impossible, and I don't really have any grounds to say that, and it may only happen in movies...except have you been to your local pharmacy and tried to get this med?! It was quite a dog and pony show dealing with a normally very helpful pharmacy department!!! They were scared of being in a loop of something not quite kosher. And we know how that ended up..."Boom!" (to use another of benryu's famous descriptors). Look at how many docs reported by members on this thread have been scared to touch this stuff with a barge pole!
This is not just phantom fear. There is litigation and culpability substance behind it...imaginary or not.

Yes absolutely the rug has been smothering tinnitus for way too long. Yes those with tinnitus need to know as soon as possible if there is a real light on the room and not the distant horizon. But this "experiment" we are all doing is way in it's infancy IMHO... We need a LOT more info before going too wild, and it won't take that long.
Some real basics like:
It would be great to know if Potiga affects long term T and not the short term T'ers to date. (SS has <)
It would be great to know what happens to Potiga reduced or eliminated T once you stop after a couple of months.
It would be great to know if people's lips start turning blue and they get Wolverine eyeballs.
...And I could go on. You know the warnings by now.

All I'm advising is patience. I have been in the firing line of hope from meds and drugs too many times and been obliterated after initial hopes of salvation. I talk from experience so perhaps I'm overly cautious, but if you saw the length and number of things I did and tried and believed so fervently in, over the past 20 years of weird illness stuff (after near perfect health for 40+ years)...you would viscerally know where I am coming from. And yeah I have a filing cabinets full of of it all but it's not going onto the internet. It comes out in my posts, hopefully helpfully.

So...moving on. Yes, I am trying it. Yes I have it coming by the end of this............NO NOT QUITE!!!

I tell you, this is why I think we should just cool it with getting too jumpy-uppy-and-light-matches with this stuff. It's not exactly smooth sailing!

That was the Canada Pharmacy just calling as I was writing there. Yes they have the scrip. Yes they have my payment...BUT it is not available in their system except out of the UK, sooooo it is going to ship from there! (Ironic = Autifony-land). And it has to clear customs. And it may take up to three weeks!

Well "bloody hell blimey" after all this, another wait. Yet it's right here in the USA, as CVS Pharmacy can get it in a few days IF I want to pay the Big Bucks $$$ for it!!! Sheeeesh. What a bust.

So there's the latest on the Potiga time-line for me. More time for Benzo riddance though and maybe some sleep!!!

The beat goes on... Best, Zimichael

 

[sticky]

Hey, just my two cents.

It is very early days for this drug and the community, I dont think the 7 - 8 people on here that are trying it at the moment is enough "evidence to researchers/gsk" that this drug is effective. I believe that you would need at least the people numbers of a phase 2 trial for researchers to take note.

It would appear that this drug DOES do something. I am hopeful and excited, but I think we need to be cautiously optimistic,

I dont think we should be contacting anyone yet. Every person that has started Reg has done so at their own risk and would accept the side effects, if any. Each person is undertaking their own private journey at this stage and is accepting the risks, and I would hate to see a company step in and shut off any opportunity that I, or others may have to give it a go and find some relief, particularly as some of us have to jump through hoops to get it.

Let them focus on Aut63 for the time being, but when we have the numbers.......then we could present our results.

In the mean time, everyone who is taking Reg, please keep us updated on your progress.

One other thing, I know Markku has created that form and it is a great idea., I would also suggest maybe those trying Reg should document eveything in a persoal journal, for your own benefit.

Hope everyone is doing ok, off to the beach

sticky

 

[111]

Agree with all the post saying dont get in touch with gsk, why would you, what would we benefit from doing so, cannot see any viable reason to do so, this thing is hardly available as it is, so what do you think they would do, suddenly give it us all to try or something.

Also i heard an interesting radio interview today here in Aus, it was with the Melbourne university research team looking into epilepsy. They have discovered two genes that cause it, and guess what, one of them is definately an Ion channel, as they put it, a channel that controls the flow of sodium, which troblat obviously works on, but they have now found the other cause as well.

They were saying once they get a medication that can work on both genes this will cure epilepsy in total, so no need to take drugs for ever, take it for a while to correct these genes and off the meds with no more symptons.

So i am now wondering if troblat could be taken for a certian time, then withdraw it, and no more symptons from then on, these issues seem to be related to simlar genes not working, so maybe this could actually happen to the people taking this on here.

link below to the news article on this topic, i am sure more indepth artices will appear as well

www.heraldsun.com.au/news/victoria/melbourne-researchers-make-epilepsy-breakthrough-with-gene-discovery/story-fni0fit3-1227045493455