Retigabine (Trobalt, Potiga) — General Discussion

[locoyeti]

I found this 2011 reference. And I can't find a drug listing so I'll presume the drug is not available.

Grey01234

Here is the information that I have read about Maxipost and Retigabine on the internet.

http://archervox.blogspo...erimental-medicine.html

http://www.ncbi.nlm.nih.gov/pubmed/11378159

http://jpet.aspetjournals.org/content/314/1/282.short

http://www.ncbi.nlm.nih.gov/pubmed/21640740

http://www.pnas.org/content/97/8/4333.full​

I e-mailed Dr. Salvi about Maxipost and doing clinical trials on human. He e-mailed back and said the drug was experimental and there are no plans to do human trials. I also e-mail NeuroSearch the drug manufacturer they stated they have no plans for clinical trials, but they are still in collaboration with Dr. Salvi. Retigbine yielded similar results. Wish they would do a human trial with Maxipost. Darn, darn, darn
​

Source: http://www.actiononhearingloss.org.uk/community/forums/tinnitus.aspx?g=posts&t=7354

hi jazz, great work as always. i was unable to get the 2nd or 3rd link to work though. early in the thread you were skeptical about potiga, what are your thoughts now?

(moderator edit: jazz's links in her original post and posts quoting her post are now fixed.)

 

[RichL]

Don't know if this link has been posted but all the info you need, pretty lengthy but an interesting read!.....http://www.nice.org.uk/guidance/ta2...-partial-retigabine-adjuvant-glaxosmithkline2

 

[Zimichael]

Basic question here... IS ANYONE ELSE OTHER THAN @Mpt ON THIS DRUG YET?????

Also, anyone having any joy getting it in USA pharmacies???

I am going to try and see if I can find availability here at my local pharmacies today (CA) as have some contacts therein. Also my doc has already said he would prescribe it, but I was going to do a few "other things" first (nerve ganglia blocks, etc.) but those all went out the window yesterday as I now have a new hassle to deal with first. My one and only root canal tooth has gone belly up and will be pulled Thursday. Big time..."Oh crap!" I can assure you, as that took much torture to do with my T!
(As some of you may know 'dental work' can mess with stuff like what I was about to try...sort of like glorified acupuncture but with procaine injections instead).

Anyway, I will post at end of day what I find out re Potiga availability and price.

Best, Zimichael

 

[SteveToHeal]

If this takes your T away once you are on it, then use it for less than 4 years so that you don't get any permanent side affects like loss of vision, smurf out etc. By then, hopefully AUT00063, AM101, newDrug or combination thereof becomes available and you can move over to that, once available. Hopefully these nasty side affect processes immediately halt once you stop taking it and that it doesn't have a long half life, that tips you over the line into the permanent irreversible loss of vision, smurf out category. Life minus T. Tick. Done.

 

[RaZaH]

"Smurf out" lOL hahah.

 

[SteveToHeal]

If this takes your T away once you are on it, then use it for less than 4 years so that you don't get any permanent side affects like loss of vision, smurf out etc. By then, hopefully AUT00063, AM101, newDrug or combination thereof becomes available and you can move over to that, once available. Hopefully these nasty side affect processes immediately halt once you stop taking it and that it doesn't have a long half life, that tips you over the line into the permanent irreversible loss of vision, smurf out category. Life minus T. Tick. Done.

Oh crap. From one of the links: http://www.rxlist.com/potiga-drug/warnings-precautions.htm#P
"The rate of progression of retinal abnormalities and the reversibility after drug discontinuation are unknown."
There goes that plan!

 

[Mpt]

no one has gone blind from this drug... only 33% had these changes after 4 years of a high dose daily, and of those that did none had significant vision changes as of that time, the neurologist that my father in law spoke too said that he would not hesitate to put his own kid on this medication if needed

 

[benryu]

Oh crap. From one of the links: http://www.rxlist.com/potiga-drug/warnings-precautions.htm#P
"The rate of progression of retinal abnormalities and the reversibility after drug discontinuation are unknown."
There goes that plan!

There's no reason to freak out. Yes the two drugs target similar area, but they are both VERY different in so many ways that it's very unlikely they have both the same side effects.

AUT00063 is much more specific and doesn't have to used with the same intensity as retigabine. And is unlikely to be a treatment for life.

Just check how side effect can differ between Potassium channel modulators, here is just a short list on the top of my head:

Minoxidil
Diazoxide
Cromakalim
Levocromakalim
Bikalim
Aprikalim
Pinacidil
Adenosine
Nicorandil
Minoxidil
Postacycline

etc...

 

[Martin69]

I am still kind of curious as to why it is not available...low sales and little use or serious side effects ?

In Germany it was taken from the market, because health insurencies did not see a useful effect (of course for the intended purpose: epilepsy). So they did not compensate for the costs. GlaxoSmithKline then took it from the market because of low sales. The side effects were already discussed here, like eye issues and brown skin and finger nails - after 4 years.

 

[Grace]

There's no reason to freak out. Yes the two drugs target similar area, but they are both VERY different in so many ways that it's very unlikely they have both the same side effects.

AUT00063 is much more specific and doesn't have to used with the same intensity as retigabine. And is unlikely to be a treatment for life.

Just check how side effect can differ between Potassium channel modulators, here is just a short list on the top of my head:

Minoxidil
Diazoxide
Cromakalim
Levocromakalim
Bikalim
Aprikalim
Pinacidil
Adenosine
Nicorandil
Minoxidil
Postacycline

etc...

since the two are real similar (autifony and reg) is autifony gonna act like reg in a way, but more specifically targetting the brain channels with the ear therefore it will probably be more effective? I know your not a doc but you got brains and i love your thoughts on it lol and you said that you think that it will take a bit longer to work on chronics rather then accute but should still possibly work? talkin bout autifony.. But i guess could question reg too.[/QUOTE]

 

[Grace]

no one has gone blind from this drug... only 33% had these changes after 4 years of a high dose daily, and of those that did none had significant vision changes as of that time, the neurologist that my father in law spoke too said that he would not hesitate to put his own kid on this medication if needed

At least you got a professional opinion bout it which is legit plus hes your father inlaw so your lucky to have him take the time to check, let alone perscribe this to you off label! Hope you gave him a big hug!!! Lol

 

[benryu]

since the two are real similar (autifony and reg) is autifony gonna act like reg in a way, but more specifically targetting the brain channels with the ear therefore it will probably be more effective? I know your not a doc but you got brains and i love your thoughts on it lol and you said that you think that it will take a bit longer to work on chronics rather then accute but should still possibly work? talkin bout autifony.. But i guess could question reg too.

Yes indeed I am not a Doctor but my field of research got me working with neuroscientists, biomedical engineers, and other medicine related experts. So over the years I could acquire some interesting knowledge and also discuss a lot of my condition with many colleagues.
I am not anymore working as a University researcher but I keep helping my old team by contributing a bit.

I am quite familiar with the brain as I have been creating a lot of algorithms to mimic some brain functions, and I try to use those information to help here as much as I can.

So in word I happy to answer your questions the best I can, but for the people reading me, this is not a medical professional opinion

"More specifically targetting the brain channels with the ear therefore it will probably be more effective? "

Yes ABSOLUTELY, it will be radically different in terms of effectiveness, sorry for using again the same analogy but I think it's a good example:

In simple words Retigabine is like trying to hydrate yourself with beer, there's water into it, it will overall hydrate you a little bit despite the alcool dehydration but it's not as viable as simple water

"It will take a bit longer to work on chronics rather then accute but should still possibly work?"

Yes it will make NO difference but the time (maybe dose) to be effective. A good analogy is to think about valves, imagine your brain has many valves for many different chemicals. When expose to loud sound hair cells start sending too much glutamate to the brain, and the brain close some specific potassium channel valves. Over the year it gets a bit rusty (brain platicity) but if the right chemical open valves again, it should be back to normal.

Hope this help !

 

[Grace]

Yes indeed I am not a Doctor but my field of research got me working with neuroscientists, biomedical engineers, and other medicine related experts. So over the years I could acquire some interesting knowledge and also discuss a lot of my condition with many colleagues.
I am not anymore working as a University researcher but I keep helping my old team by contributing a bit.

I am quite familiar with the brain as I have been creating a lot of algorithms to mimic some brain functions, and I try to use those information to help here as much as I can.

So in word I happy to answer your questions the best I can, but for the people reading me, this is not a medical professional opinion

"More specifically targetting the brain channels with the ear therefore it will probably be more effective? "

Yes ABSOLUTELY, it will be radically different in terms of effectiveness, sorry for using again the same analogy but I think it's a good example:


"It will take a bit longer to work on chronics rather then accute but should still possibly work?"

Yes it will make NO difference but the time (maybe dose) to be effective. A good analogy is to think about valves, imagine your brain has many valves for many different chemicals. When expose to loud sound hair cells start sending too much glutamate to the brain, and the brain close some specific potassium channel valves. Over the year it gets a bit rusty (brain platicity) but if the right chemical open valves again, it should be back to normal.

Hope this help !

Ahh i get it. Your so smart! I have more faith in listenin to your theories then any ent doctor, cause there not researchers and stick with the nothing can be done. Thanks

 

[Zimichael]

OK here's the scoop on Potiga availability and pricing c/o the most switched on pharmacy ("Chemists") in town. This is N. California, so USA.

- It is available in 50 mg, 200 mg, and 400 mg...but for some reason the 400 mg was not pulling up if ordered.
- It has to be ordered and only comes in "90 Packs". So ninety it is, or no dice.
- The active ingredient is Ezogabine (and pharmacist wondered if this was then Retigabine?! - It is according to web info. just different names. Plus came up in this thread earlier I think?...Yeah I need a nap and my bloody root canal hurts!)
- Doubts if covered by insurance, as other meds do the same 'normal' anti-convulsant thing, etc. So you would have to ask your insurance provider directly.
> > > PRICES! (Gold bars please!)
~ 1 pack of 90 @ 50 mg = $461.95
~ 1 pack of 90 @ 200 mg = $923. 25

Initial dosage according to drugs.com is 100 mg TID (100 mg three times a day) then increasing in jumps of 50 mg TID weekly to maintenance dose. Matt is doing 900 mg a day total.
So...that is only 5 DAYS worth with the 50 mg option, and 20 DAYS worth using the 200 mg option. So yeah, we are looking at over 1,000 US $ smackers a month!!! = $12,000/year if continual.
On my income this is rather a severe setback unless we have a brain "re-boot" phenomenon c/o fiddling with those potassium channels and can then quit the stuff. [No wonder ATEOS wants a 'permanent fix' as God knows what Autifony will cost once it's out in the market, with a patent, and salivating masses wanting it desperately].

So I guess next call is to my Obamacare insurance carrier, but I'm not feeling super hopeful on their beneficence for this stuff, for this application. It may take it catching on big time with the VA and military, and thus "mainstream", therefore harder to deny. Anyway, can't help to ask.

Best, Zimichael

 

[Telis]

OK here's the scoop on Potiga availability and pricing c/o the most switched on pharmacy ("Chemists") in town. This is N. California, so USA.

- It is available in 50 mg, 200 mg, and 400 mg...but for some reason the 400 mg was not pulling up if ordered.
- It has to be ordered and only comes in "90 Packs". So ninety it is, or no dice.
- The active ingredient is Ezogabine (and pharmacist wondered if this was then Retigabine?! - It is according to web info. just different names. Plus came up in this thread earlier I think?...Yeah I need a nap and my bloody root canal hurts!)
- Doubts if covered by insurance, as other meds do the same 'normal' anti-convulsant thing, etc. So you would have to ask your insurance provider directly.
> > > PRICES! (Gold bars please!)
~ 1 pack of 90 @ 50 mg = $461.95
~ 1 pack of 90 @ 200 mg = $923. 25

Initial dosage according to drugs.com is 100 mg TID (100 mg three times a day) then increasing in jumps of 50 mg TID weekly to maintenance dose. Matt is doing 900 mg a day total.
So...that is only 5 DAYS worth with the 50 mg option, and 20 DAYS worth using the 200 mg option. So yeah, we are looking at over 1,000 US $ smackers a month!!! = $12,000/year if continual.
On my income this is rather a severe setback unless we have a brain "re-boot" phenomenon c/o fiddling with those potassium channels and can then quit the stuff. [No wonder ATEOS wants a 'permanent fix' as God knows what Autifony will cost once it's out in the market, with a patent, and salivating masses wanting it desperately].

So I guess next call is to my Obamacare insurance carrier, but I'm not feeling super hopeful on their beneficence for this stuff, for this application. It may take it catching on big time with the VA and military, and thus "mainstream", therefore harder to deny. Anyway, can't help to ask.

Best, Zimichael

If 12k a year gets rid of this...sold!!

 

[Zimichael]

OK, it's a "NO" from my insurance carrier "Blue Cross" = no surprise. However, a special appeal can be made c/o one's doctor, but for a novel and "off label" use like this, I can just see the bean counters rolling their eyes indefinitely.
We need the war guys behind this, then it will get the muscle.

Shucks!

Well @Telis you make more than me .....My darn T & H has cut my "economic usefulness" rather severely.

Best, Zimichael

 

[Telis]

OK, it's a "NO" from my insurance carrier "Blue Cross" = no surprise. However, a special appeal can be made c/o one's doctor, but for a novel and "off label" use like this, I can just see the bean counters rolling their eyes indefinitely.
We need the war guys behind this, then it will get the muscle.

Shucks!

Well @Telis you make more than me .....My darn T & H has cut my "economic usefulness" rather severely.

Best, Zimichael

I'm sorry to hear that. Sorry if that came across as rude, definitely not my intention.

Thanks for the great info Zimichael

 

[Zimichael]

@Telis hey no sweat, I did not even think of it as rude at all. Did not cross my mind, honest!...Take care and thanks for your 'sensitivity' to that even. Shows "moral worth" as my dad used to say.

 

[Telis]

Just a thought...if this worked for you, your "economic usefulness" will hopefully be restored anyway!

@Telis hey no sweat, I did not even think of it as rude at all. Did not cross my mind, honest!...Take care and thanks for your 'sensitivity' to that even. Shows "moral worth" as my dad used to say.

 

[RaZaH]

Talked to my doctor , I need some sort of special subscription to get this drug , dammit.
He needs to apply for it specifically so it will take at least a few days for me to get this, that is unless I run into trouble and cannot get it at all . That would be disappointing, but this country is drowning in silly rules so I would not be surprised.

We really need another person getting their hands on this stuff.
Until then I am going for 99% chance of this being a fluke.

If not, then MPT seems to have stumbled upon a "cure" ... that is no small matter.

 

[Telis]

Talked to my doctor , I need some sort of special subscription to get this drug , dammit.
He needs to apply for it specifically so it will take at least a few days for me to get this, that is unless I run into trouble and cannot get it at all . That would be disappointing, but this country is drowning in silly rules so I would not be surprised.

We really need another person getting their hands on this stuff.
Until then I am going for 99% chance of this being a fluke.

If not, then MPT seems to have stumbled upon a "cure" ... that is no small matter.

I'm going to get it, even if I have to go stay in the states for a bit. One way or another I will get my hands on it. I would like to get it sooner than later as I feel I'm still in the acute stage, kind of.

 

[111]

I copied this link some days ago, dont know if you check previous posts, so put it on again as there seems to be recurring questions about side effects, and this info answers ALL your questions. This will show you each and every adverse side effect this drug had whilst being tested, right through from start to human trials.

Take time to read it, print it even, then you might make your own mind up on wheather to use this drug or not, if you can get it that is.

This document was supplied by Glaxo S K to an approvals board to have this product registerd in a country, so it isnt some random page from a web site, it is very, very informative.

www.tga.gov.au/word/auspar/auspar-retigabine-131017.docx

Also the below is stated as well within the document, so maybe by chance it does work ?

In vitro data suggested that retigabine may interact with KCNQ channels in the inner ear, but this was not addressed in in vivo animal studies.

 

[rtwombly]

All last week and the week before I was on vacation, so a bit cut off from my doctors. I did look up Retigabine coverage under my health insurance and it seemed to be covered, but I didn't talk to a living human being who could as the embarrassing question of whether or not this had been clinically tested for this usage yet. Still, I was all set to call my neurologist and try.

Went into work this morning and the security guy met me in the parking lot, walked me in, then walked me out twenty minutes later with a box of my personal belongings. Still waiting to hear back from HR with the details of my health coverage. If it lasts until the end of the month, I might still try, but that leaves me all of eight days, best case scenario, with the possibility that I might be back where I started this time next month.

 

[bill 112]

no one has gone blind from this drug... only 33% had these changes after 4 years of a high dose daily, and of those that did none had significant vision changes as of that time, the neurologist that my father in law spoke too said that he would not hesitate to put his own kid on this medication if needed

Dude if this drug had a side effect that made your balls fall off Id still take it haha youve convinced me,Im going to my doctor A.S.A.P and Im getting this drug,shes very understanding and willing to help me as much as possible so I wouldnt expect this to be a problem,only problem is that I dont know if this drug is available in good old Ireland.Will keep you guys posted as I dont expect to stay on this drug long term if Im given it,just want to see for myself if Autifony once and for all are on the right track.Best wishes Bill.

 

[jazz]

@locoyeti Sorry about some links not working. I just copied them from a site; I should've tested them before posting.

early in the thread you were skeptical about potiga, what are your thoughts now?

Well, I don't doubt the drug's efficacy for acute tinnitus, i.e., < 12 months. And it may also work for chronic tinnitus. I'm eagerly awaiting people with different tinnitus durations to begin the drug.

That said, the drug is still too risky for me. Despite having habituation difficulties after nearly two years, I can wait a few more for Autifony. I'm just not brave.

But perhaps some type of medical device modality--besides the current invasive VNS treatment--will emerge and offer some relief until something more curative may be found.

Are you willing to try it? Or perhaps you are already doing AM-101.

 

[dan]

@Mpt , how's it going? still quiet?

 

[Hudson]

I asked my doctor about it. He's going to contact a neurologist, possibly set an appointment up too.

That doesn't mean my insurance will cover it, of course.

 

[EddyLee]

So Minoxidil is a Potassium channel modulators... have been using it for years and wondering if it could be the cause of my T or contribute to it...

There's no reason to freak out. Yes the two drugs target similar area, but they are both VERY different in so many ways that it's very unlikely they have both the same side effects.

AUT00063 is much more specific and doesn't have to used with the same intensity as retigabine. And is unlikely to be a treatment for life.

Just check how side effect can differ between Potassium channel modulators, here is just a short list on the top of my head:

Minoxidil
Diazoxide
Cromakalim
Levocromakalim
Bikalim
Aprikalim
Pinacidil
Adenosine
Nicorandil
Minoxidil
Postacycline

etc...

 

[dan]

According to this chart (link below), Minoxidil is a K(IR)6.1 Potassium channel opener
Also I read that Minoxidil is the active ingredient in Rogaine - which has online anecdotal evidence of causing tinnitus. Some said tinnitus became softer once Rogaine was discontinued.

Retigabine, as I'm understanding from this chart is a K(V)7.2 class.

http://icmr.nic.in/ijmr/2009/march/0303.pdf

 

[Mpt]

hey dan.. I heard some hissing yesterday afternoon for a minute or two after a long card drive on the highway, but it quieted down quickly... I didn't hear anything for a few hours after that, so curiosity got the best of me and I went and sat in my car inside the garage (needless to say an extremely quiet place) and I sat there and tried to "find" it for a few minutes and couldn't hear anything... going on my experience so far, this isn't a 100% cure, in the respect that I never hear any sounds ( I will say though that the sounds when I do hear them are not nearly as loud as my old tinnitus)... being a math dork, I was talking to a friend yesterday and conjecturing that I used to hear my tinnitus pretty much every second of the day, and on an average day I was awake for 61,200 seconds, now I hear my tiniitus anywhere from 0 to 300 seconds a day I would say, so assuming I hear it 300 seconds on about the worst day I've had (60,900/61,200)= .995% effectiveness-- I'll stop short of calling it a cure, but any treatment with a 99.5% success rate in treating a subjective symptom is for practical day-to-day purposes like a cure when it comes to the fact that even after a short time tinnitus has no effect on my life anymore other than me having to take some pills every 8 hours