Retigabine (Trobalt, Potiga) — General Discussion

@Mpt is the only one who was cured??

 

So is Retigabine a temporary fix then?

 

relax man.
You really gotta dig through the user experience thread. There's no easy way to answer that.

 

Is this a med you can get with symptoms of tinnitus?Even though there's no real clinical evidence yet?>

 

You take this on your own risk and you will have to find a way to obtain a doctor prescription. You can not get it just because you have tinnitus. It is anti-epileptic. But there are ways to get it, but you will have to pay full price. My government will not pay back because I don`t have epilepsy. It is a med with a lot of side effects and not to be used casually and without knowledge of to do`s and not to do`s. I went to my Neurologist yesterday and she was adamant I would take a QT test before I started taking the drug on my own risk because I could drop dead in a second if it tampered with my QT rates (QT has to do with heart rhythms) ... Also it can cause changes in the retina and you can go blind ... all of that said I have seen very few people here complain about side effects. But you have to know what your doing and where you get yourself into.

 

Are you saying that Lyrica made ur T 200% worse? i never heard that about lyrica. Are u or someone considering to try Keppra? if my H gets a little worser i will go for it

 

@Juan Carlos I am seriously thinking about taking Retigabine for a short period of time and also a low dosage. I am a 66 yr. old man with one stent placed in an artery due to a 80% blockage. Physically, I feel good now. My question is after the course of Retigabine that you took, is your T still lower and your thoughts on the drug ? I have noticed that all the other trialers that showed success are still looking for ways to ease their tinnitus, so would like to hear from them also. Kind Regards to All.

 

RTG helped me to habituate for sure. RTG made volume lower when taking it for sure.
I think there is some permanent effect of it, but im not 100% sure
H was totally gone when taking RTG but after taper off seems to come back

take in mind that RTG increases IQ interval, so u have to talk to you doctor first about that
take in mind also that AUT results will be available in July, that's a very short time considering T history, if you prefer to dont take un necesary risks.
Im still looking ways to erradicate T, but my reaction to T now is not so bad as before

 

thanks kindly @Juan Carlos I will take your suggestions to heart. Thanks for the quick response.

 

Anybody else want to give Trobalt a try?

 

Hey Juan how are you? Sorry to tell you this Juan but yes Lyrica is well documented as being a possible cause of T and therefore yes can make it worse.......but then again when you Google Tinnitus it seems that anything seemingly innocent can make T worse, a chocolate doughnut or Thai green curry is no longer safe.

 

Not exactly right, here's a good source on why it is that mice are used in human study's, the mice genome is quite similar in actual fact!

http://www.nih.gov/news/health/nov2014/nhgri-19.htm

 

well i see they got cured mouses 99,9% and humans nothing, really striking similarity we are with mice

1000 for monkey
400 for mouse

I rather choose mouse, and it is free in USA, but in Europe it is forbiden.



Misleading mouse studies waste medical resources
Retrospective of more than 100 failed drugs show many should have never made it to clinical trials.

http://www.nature.com/news/misleading-mouse-studies-waste-medical-resources-1.14938


"" Ultimately, five trials involving more than 1,000 people with ALS in five countries found no benefit, Chiò says, and the initial mouse results were never duplicated.""

You wanna bet they will announce nothing until September even if they do announce anything up to the end of this year!!!???

+ Then never announced or started something when they said they will.

it was always temporary and that means it works max 6 months...

he was not CURED, his tinnitus went away as to many other people it did. CURED lol

 

I don't think this article is saying that mice are too different, just that some previous study's with mice were poorly conducted @Christian78 .

"Perrin argues that positive results seen in previous mouse trials were spurious, probably resulting from poorly conducted studies."

 

someone is selling me potiga for €300 a box (84 pills x 200 mg)

is that good price?

 

That is way way over priced and you are being ripped off..............

Actually I would like to readdress my post.
It is not for me to say whether someone is paying too much or not or being ''ripped off'' or not.
After all it is up the buyer if he is happy with the price. Something is only worth what someone is willing to pay. It was simply a genuine and quick response to an open question as I am aware of the market place cost of this drug and therefore the mark up profit margin on it being passed onto members here....but it is an individuals decision how much he or she pays.

 

we get Trobalt for 124 euro this box.

 

That is the price in belgium? Think you are in belgium Nils?
In Spain it is cheaper than belgium i believe.

 

Just for information to costs"
in Spain for
50mg x 84 tablets x 1 plus
100mg x 84 tablets x 1 plus
200mg x 84 tablets x 2

inclusive of all this above together is 260 euros for all this.

not sure what the costs are in france but can find out if anyone wants to know for information purposes.

 

@nills , did you take it?

 

@Markku
@attheedgeofscience

I have spoken to a member of GSK medical team (private reasons Markku is familiar with) and I did ask what would be the best way for GSK to be aware of what people are doing on this board in regards to taking retigabine for tinnitus.

I was told the best way is for each trialee to contact GSK and inform them of their personal experience, GSK member by law needs to write a report and pass it onto their clinical team.

From there it's in gods hands so to speak!

 

if you tell us the steps, email and what info to send all trealees we can send that email with our experience if that will be usefull for future versions of trobalt

 

That's a good point, I was talking to GSK member here in Australia, but i can check tomorrow if there's a particular number to call.

 

Thank you for the information. I believe what you are referring to is the reporting of side effects. In this context it is the duty to pass on information of adverse effects. How non-adverse side effects are handled, I do not know, but it would require some clarification as to what the pharma - in this case GSK - would do with the information (i.e. it is one thing to take a product off the market because of adverse effects; it is almost certainly "something else" to expand the list of conditions an existing product can be used for).

As it happens, I did contact GSK already back in November (see correspondence below). This was before Team Trobalt formed a partnership with TRI. The response was not very helpful (as can be seen).

By "not very helpful", I mean that GSK could right, then, and there have chosen to take the information I provided a step further. Instead, they essentially dodged the questions and my e-mail (which is why I never followed up).

Adverse effects can - as an example - be reported via links such as the following (GB in this case):

https://health.gsk.com/en_GB/ReportAdverseEvent.html
http://www.nhs.uk/chq/Pages/1962.aspx?CategoryID=73&SubCategoryID=101

attheedgeofscience
23/MAR/2015.

 

@attheedgeofscience

If you don't mind me doing some digging in my part of the world?
The guy I spoke to today was really nice and helpful!

 

It's a free world...!

I'm just letting you know - in the interest of transparency - what I have already looked into. That's all...

It all helps, but at the end of the day, it is the end result which matters. I am not going to disclose how I know this, but I can say with +95% certainty that GSK is already aware of this thread (or at least they are aware of the information in it).

Thank you for your efforts.

 

Haha @attheedgeofscience it's like if you are some kind of a project leader at TT. But my Kudos for your professionalism in approaching external parties. It's very valuable work.

Thank you

 

All for it to give it a go. Just getting it is the problem.

 

Couldn't agree more.

 

Maybe that's correct under regular circumstences, certainly not in this case. To take advantage of one's suffering and to make profit out of it (as a member to member here, not as a commercial profit based company) is simply disgusting, in my opinion at least.