Retigabine (Trobalt, Potiga) to Be Discontinued

[Danny Boy]

Epilepsy drug Trobalt (retigabine) to be discontinued
The epilepsy drug Trobalt, also known as retigabine, is to be discontinued and will no longer be available after June 2017.

Trobalt, made by the pharmaceutical company GlaxoSmithKline (GSK) has been available in tablet form at 50mg, 100mg, 200mg, 300mg, and 400mg dosages.

Advice for healthcare professionals
Healthcare professionals are advised to begin seeking alternative medicines for existing patients as soon as possible and to ensure that all patients are withdrawn from this medicine by the end of June 2017 at the latest.

Patients' treatment should be withdrawn with a gradual dose reduction over a period of at least three weeks, following current prescribing information. All patients should continue to receive safety monitoring in line with the local prescribing information while they remain on treatment with Trobalt. No new patients should now start on this treatment.

Safety issues
In 2013 GSK announced that there were safety issues around the drug as it could cause a blue discolouration of the skin and eye abnormalities. Doctors were urged to review patients prescribed the drug and to re-evaluate benefits versus risk.

However now, due to the very limited use of the medicine and the continued decline in new patients being prescribed Trobalt, GSK is discontinuing the medicine on a permanent basis.

Trobalt has been prescribed as an add-on treatment for drug-resistant partial onset seizures with or without secondary generalisation in people aged 18 or older.

https://www.epilepsysociety.org.uk/...ne-to-be-discontinued-14-09-2016#.V-xuIpMrJsM

 

[Ecip]

Oh yea.. Now what?

 

[Ian Mac]

sheeeiiit

 

[Danny Boy]

Oh yea.. Now what?

Well, it's the waiting game for the next treatment. It is unsafe, so I can understand why they are discontinuing it.

 

[Alue]

Well, it's the waiting game for the next treatment. It is unsafe, so I can understand why they are discontinuing it.

Unsafe and not profitable for them.
Are you still on Trobalt?

 

[Danny Boy]

Unsafe and not profitable for them.
Are you still on Trobalt?

I take it time to time. I'm glad I did take it, because I don't think I would be alive now, as my tinnitus was way too high and the keppra and trobalt combo cured my hyperacuis.

 

[gotyoubynuts]

I take it time to time. I'm glad I did take it, because I don't think I would be alive now, as my tinnitus was way too high and the keppra and trobalt combo cured my hyperacuis.

Are you going to buy lots of Trobalt for safe keeping? Aren't you worried how your tinnitus will behave after Trobalt is discontinued?

 

[Danny Boy]

Are you going to buy lots of Trobalt for safe keeping? Aren't you worried how your tinnitus will behave after Trobalt is discontinued?

I am worried, but what can I do?

 

[Ecip]

Yea, no shit, eh.. I haven't checked up on this lately, but how's that research coming along that's looking at a modified version of retigabine to be more precise in targeting tinnitus? Hopefully that'll be something.
Would writing glaxo in regards to retigabines effect on tinnitus be worth it? Maybe someone like Martin Shkreli would be interested in purchasing the drug and doing some research and development. I'll have to fire off a few emails this weekend.

 

[Danny Boy]

Yea, no shit, eh.. I haven't checked up on this lately, but how's that research coming along that's looking at a modified version of retigabine to be more precise in targeting tinnitus? Hopefully that'll be something.
Would writing glaxo in regards to retigabines effect on tinnitus be worth it? Maybe someone like Martin Shkreli would be interested in purchasing the drug and doing some research and development. I'll have to fire off a few emails this weekend.

Sadly won't be out for ages. Do you reckon they made the right call? I mean, some people have uncontrollable seizures.

 

[Ecip]

Sadly won't be out for ages. Do you reckon they made the right call? I mean, some people have uncontrollable seizures.

I don't know. There probably are other drugs. And sales dictate everything. Money runs the world. If it doesn't meet their investors bottom line, its done.
But then again, at this point, does it cost them much to produce it?

 

[Danny Boy]

I don't know. There probably are other drugs. And sales dictate everything. Money runs the world. If it doesn't meet their investors bottom line, its done.
But then again, at this point, does it cost them much to produce it?

Indeed..But safely could be another concern specially if they blind people.

 

[Alue]

Indeed..But safely could be another concern specially if they blind people.

I think safety issues (like blindness) would have come out by now, they have a responsibility to those who are taking if for epilepsy and to the doctors that are prescribing it. It would be a big deal if they just decided to cover it up and discontinue the drug.

More likely the discontinuation is primarily profit driven. Limited risk-benefit and not many doctors are prescribing it.

 

[Danny Boy]

I think safety issues (like blindness) would have come out by now, they have a responsibility to those who are taking if for epilepsy and to the doctors that are prescribing it. It would be a big deal if they just decided to cover it up and discontinue the drug.

More likely the discontinuation is primarily profit driven. Limited risk-benefit and not many doctors are prescribing it.

Always profits...

 

[Danny Boy]

"Trobalt, the antiepileptic which made blue people
Keywords: Trobalt , GSK
By Soline Roy - the 26.08.2016

GSK announced it would soon cease to market the Trobalt, not sold enough to be profitable. Despite his curious side effect, the molecule seems irreplaceable for certain patients.


Neurologists are informed since this summer for "commercial reasons", the pharmaceutical company GSK decided in June 2017 to cease definitively and worldwide sale of antiepileptic Trobalt (retigabine), "because its very limited use and the continued decline of the number of patients treated. " Doctors therefore must "begin to identify alternative drugs." Problem for a number of patients, there simply is no alternative ...

"The Trobalt is not well supported"
"The Trobalt is not very well supported," admits Dr. Arnaud Biraben, epileptologist neurologist at the University Hospital of Rennes. In particular, dizziness, somnolence and fatigue force many patients to stop treatment. "This has resulted in a very substantial reduction in its use from the start of its use and finally very few patients still take" notes Prof. Philip Derambure, a neurologist at the University Hospital of Lille, who nevertheless recognizes " very effective in some forms of epilepsy very resistant to other treatments. " The profit is so "revolutionary," insists his colleague Rennes, who participated in the first tests of the molecule. As retigabine has a peculiarity: it is the only act on potassium channels which are involved in regulating the electrical activity of neurons.

Pigmentation minor
"One of the first patients I have treated with Trobalt had seizures every day, and no other drug was effective, remembers Arnaud Biraben. Then with retigabine has completely stopped making attacks! "When the test was completed, the man was able to continue to benefit from treatment as compassionate to marketing. And even when he became the first to report a strange side effect ...

For the Trobalt has another peculiarity: to force the take, some patients become ... blue!Pigmentation of nails, lips, skin and mucous membranes may indeed appear over time, a priori without medical severity, except possibly if it affects the retina. This color seems due to drug deposition in the skin, says Arnaud Biraben, and is reversible upon discontinuation of treatment.Approved in Europe in March 2011, retigabine has seen in June 2013 its indication limited to patients in whom other molecules are ineffective, with a particular ophthalmic increased surveillance.

A blue skin with metallic reflections
As to the first patient of Dr. Biraben, "after two years of treatment has a very clear blue skin with metallic reflections. But no matter to him: his marriage was on the verge of breaking, he lost his driving license and was not far from losing his job joiner ... No way for him to stop the treatment. "And the doctor feared the day when he will announce that the drug that changed his life will soon disappear.

His hope: that the molecule can be resumed by a laboratory specializing in the marketing of orphan drugs. There is perhaps no commercial space for Trobalt in the twenty AEDs available. But medically, it seems indisputable, if only for a few hundred patients."

http://sante.lefigaro.fr/actualite/2016/08/26/25331-lantiepileptique-qui-rendait-gens-bleus

 

[Mithrandir]

I have a lot of boxes at home. I stopped use them

 

[grate_biff]

I have a lot of boxes at home. I stopped use them

Me too. Never used them though.

Guess those poor souls are probably buying like crazy now to make it last!

Could this possibly put a speed on for the RL81 or whats its name... the RTG molecule with a fluorid atom attached to it?

 

[Danny Boy]

"Retigabine (Trobalt) to be discontinued in 2017
3 October, 2016
GlaxoSmithKline (GSK), the manufacturer of retigabine (brand name Trobalt), has announced it will permanently stop making this medicine from June 2017.



GSK says it is discontinuing this medicine for commercial reasons. Only around 1,500 people worldwide currently take this medicine, and this number is getting smaller as doctors very rarely prescribe it.

GSK has advised doctors to start looking for other suitable medicines for any patients taking retigabine as soon as possible. It has told doctors that all patients should have stopped taking retigabine by the end of June 2017 at the latest.

If you take retigabine, your epilepsy specialist should talk to you about how to safely stop taking this medicine in plenty of time before June 2017. They may suggest switching you to an alternative treatment. If you are not due to see an epilepsy specialist in the near future, it is important to ask your GP to refer you"

 

[Alue]

"Retigabine (Trobalt) to be discontinued in 2017
3 October, 2016
GlaxoSmithKline (GSK), the manufacturer of retigabine (brand name Trobalt), has announced it will permanently stop making this medicine from June 2017.



GSK says it is discontinuing this medicine for commercial reasons. Only around 1,500 people worldwide currently take this medicine, and this number is getting smaller as doctors very rarely prescribe it.

GSK has advised doctors to start looking for other suitable medicines for any patients taking retigabine as soon as possible. It has told doctors that all patients should have stopped taking retigabine by the end of June 2017 at the latest.

If you take retigabine, your epilepsy specialist should talk to you about how to safely stop taking this medicine in plenty of time before June 2017. They may suggest switching you to an alternative treatment. If you are not due to see an epilepsy specialist in the near future, it is important to ask your GP to refer you"

As I figured. That sucks. It comes down to money.

Maybe it will spur more research into more selective potassium channel openers, but I wouldn't count on it.

 

[Ian Mac]

"Retigabine (Trobalt) to be discontinued in 2017
3 October, 2016
GlaxoSmithKline (GSK), the manufacturer of retigabine (brand name Trobalt), has announced it will permanently stop making this medicine from June 2017.



GSK says it is discontinuing this medicine for commercial reasons. Only around 1,500 people worldwide currently take this medicine, and this number is getting smaller as doctors very rarely prescribe it.

GSK has advised doctors to start looking for other suitable medicines for any patients taking retigabine as soon as possible. It has told doctors that all patients should have stopped taking retigabine by the end of June 2017 at the latest.

If you take retigabine, your epilepsy specialist should talk to you about how to safely stop taking this medicine in plenty of time before June 2017. They may suggest switching you to an alternative treatment. If you are not due to see an epilepsy specialist in the near future, it is important to ask your GP to refer you"

Do you really think that trobalt helped your T? Why are you so sure?

 

[Kyxwz]

It didn't help me but ruined my vision: floaters and visual snow from 8 days on trobalt.
The biggest mistake of my life.

 

[Elgringo32]

@Kyxwz good luck ! for me the biggest mistake of my life was having participated to the AM101 trial, i have now a severe T and very reactive H. Hopefully i did not try trobalt, i have already floaters and visual snow.

 

[Danny Boy]

@Kyxwz good luck ! for me the biggest mistake of my life was having participated to the AM101 trial, i have now a severe T and very reactive H. Hopefully i did not try trobalt, i have already floaters and visual snow.

Hasn't AM-101 failed? Also sorry to hear about your circumstances.

 

[valeri]

@Kyxwz good luck ! for me the biggest mistake of my life was having participated to the AM101 trial, i have now a severe T and very reactive H. Hopefully i did not try trobalt, i have already floaters and visual snow.

Sorry to hear that.
It sucks that we try so many different things hoping for some relief bit end up worse than before.
How do you cope with reactive H? That's my huge problem at the moment, reactive hissing and H.

 

[Kyxwz]

@Kyxwz good luck ! for me the biggest mistake of my life was having participated to the AM101 trial, i have now a severe T and very reactive H. Hopefully i did not try trobalt, i have already floaters and visual snow.

Do You have VS too?
For me it's a tragedy. It's like to see through a sea of moving air.
My eyes are tired all the time.

 

[Mithrandir]

@Elgringo32
@Ian Mac
@valeri

Did you fill the survey of hyperacusis research ?

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

 

[Tigo]

What the best next medicine after Trobalt that works for T ???

 

[Samantha R]

@Tigo no meds unfortunately. SF0034 and RL81 are modified versions of Trobalt but they are a way off. Not even in clinical trials yet.

 

[Rasmus]

Didt even know you could get anything that would help with T. But again i have been use to my T for 2 years now.
Even if it still was available i dont think i would buy it anyway because i know when im playing games or doing something else i never think about my T anyway, atleast thats how it is 90% of my day So im 100% you all can get use to it

 

[Christian78]

Didt even know you could get anything that would help with T. But again i have been use to my T for 2 years now.
Even if it still was available i dont think i would buy it anyway because i know when im playing games or doing something else i never think about my T anyway, atleast thats how it is 90% of my day So im 100% you all can get use to it

You have no idea how wrong you are. I can't play games any more cos my brain makes tinnitus spike, so I had to give up games, even those simple ones.

With recent worsening I can't watch tv shows, I just rewind them so much I have lost interest and so much pain came to me that I became aggressive. It is sad.

I use retigabine and it still only thing that helps me, single dosage 200 or 300mg in morning plus ACRN+high pitch tones 30 to 60 minutes to reset brain so I can survive day.

Trying to read a book but is going slowly, first time my T went up was after translating 54 pages of text from English to Serbian kirilic.

So you have no idea what you are speaking about.

What the best next medicine after Trobalt that works for T ???

Clonazepam + sounds that are in same freq as your brain, and avoiding stress+good sleep, and one strange and stupid medicine from Austria that helps me Sonosan, it is just if they write honestly vitamins minerals and so on, but I don't trust meds, I tried it 3 times and stopped and tried and it has effect. It is not placebo.

It didn't help me but ruined my vision: floaters and visual snow from 8 days on trobalt.
The biggest mistake of my life.

did you use 100mg x3 for 7 days

I don't know. There probably are other drugs. And sales dictate everything. Money runs the world. If it doesn't meet their investors bottom line, its done.
But then again, at this point, does it cost them much to produce it?

well i got 50 box for until 12/2018, I am sure they can produce it every 2 years as it last long time, but point is they dont want to.

Are you going to buy lots of Trobalt for safe keeping? Aren't you worried how your tinnitus will behave after Trobalt is discontinued?

I discontinued trobalt for 4 months and was ok, but recent worsening forced me to use it to calm brain activity