Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

Mpt lucked out in being practically immune to the side effects, but if you read the user experiences and this thread, the pattern is quite clear: everybody who has been on at least 700mg has reported a decrease in their tinnitus, some have reported improvement at lower dosages.

The only people to have had no positive effect that I recall are Zimichael and Hengist. Zimichael had supply problems and scheduling conflicts that made him have to stop at 600mg, and Hengist, frankly, is so unrelentingly negative in his posts that I don't know if he'd admit to any cause for optimism. Lep withdrew due to side effects but later tried again and had some success, and Viking had to stop early but had experienced some promising results.

On the question of whether the effect can become permanent, it's just too early to say. Christian78 has talked about taking a break. If and when he does he can comment on whether or not his levels stay where they are or not. Johno made a comment to the effect that he kept his improved state during a break.

@locoyeti, I apologize if I missed a post, but did you ever say if what you're taking is branded Potiga or Trobalt?

I'm doing research on importing and so far I don't see any reason an American with a prescription would have reason to be concerned about importing from Canada, the UK, or an EU country. The FDA says basically that while it is technically illegal, it's not worth time and money to stop anyone importing a substance that is for their own use and approved in the US. Even for unapproved substances they have guidelines that take into consideration compassionate reasons for turning a blind eye. They repeatedly say that their top concern is public safety, and in this case I actually believe it!

What is illegal? Importing from online pharmacies outside the US?

 

[Juan Carlos]

Tried importing powder from China, scouring online pharmacies and talking to friends of friends in Spain. I'm unable to get retigabine.

Would anyone be charitable enough to send a holiday package to the UK?

Please get in touch. A little peace for December.

Its ilegal to send drugs. I advice you to go to spain. Check ryan air or easyjet you will find flights for cheap price, less than 70€. and get your Trobalt in any drugstore. Today i will tell you the exact price of 100mg box. the starter pack, 21x50mg+42x100mg is 35€

 

[dan]

Today i will tell you the exact price of 100mg box. the starter pack, 21x50mg+42x100mg is 35€

Yes please let us know the 100mg cost. I hope you had a nice trip.

 

[dan]

What is illegal? Importing from online pharmacies outside the US?

Yes, its illegal to import drugs without a prescription, but why would it concern you ? - I thought you said you had a private doctor who would prescribe it to you if you wanted it...

 

[tomm]

It's not illegal to send a parcel of medicine. Not in the least bit concerned about receiving parcels either - if it was a way to get in trouble, people would just send medicine to people they didn't like to get them into trouble.

I'm willing to pay for the parcels and the generous time of the person willing to help another T sufferer.

Thanks,
Tom

 

[dan]

It's not illegal to send a parcel of medicine. Not in the least bit concerned about receiving parcels either - if it was a way to get in trouble, people would just send medicine to people they didn't like to get them into trouble.

I'm willing to pay for the parcels and the generous time of the person willing to help another T sufferer.

Thanks,
Tom

Ok one more time...its not illegal, if the sender encloses a prescription.
That's why when you order online they require a faxed Rx from your doctor.
If there is no Rx enclosed, you run the risk of losing your package to customs. Also its the sender who is accountable.

On another note, I'll deliver you Trobalt for a thousand dollars.
PM me if interested.

 

[Juan Carlos]

Yesterday I came back from my trip, and yesterday night started with Trobalt. Now im doing 100+100+50.

No side effects.
100mg pill took yesterday at 20h no effect on T (food on stomach), 100mg pill took at 4am (emptier stocmach), seems that lowered T but i was half sleep so can't say its because of that. Probably will increase dose for the weekend as im off job
Yesterday ordered 4 boxes 21x100mg in a different pharmacy, will but them today.
I didnt sleep good because I was hyper vigilant of my T and expecting side effects wich didn't happen, normally I sleep good

Edit: I weight 81kg. 196cm

@Danny Boy it seems that low dosages affect you much more than other trialees, talking about side effects and also T reduction. Could you please tell us whats your weight ? also can you please fill the user experience form every time notice some change on the T, with all information about it. This a real study and user experience thread is very important as this one is way too long and messy to make resumes

 

[Telis]

Yes, its illegal to import drugs without a prescription, but why would it concern you ? - I thought you said you had a private doctor who would prescribe it to you if you wanted it...

He's saying it's illegal WITH a prescription.

 

[amandine]

any way that we can see the results so far of the user form as in other user forms on this forum.
I am not taking it (yet) trobalt but am rapidly coming to the conclusion that it may be necessary as abhorrent at that seems to me right now.
I realise that these are just progress reports right now but would be really nice to be able to read these results in a succint form as these progress reports will be...
any chance mods please

 

[tomm]

Ok one more time...its not illegal, if the sender encloses a prescription.
That's why when you order online they require a faxed Rx from your doctor.
If there is no Rx enclosed, you run the risk of losing your package to customs. Also its the sender who is accountable.

On another note, I'll deliver you Trobalt for a thousand dollars.
PM me if interested.

They're not going to know who's sent it unless you write your address on the back, and if you do, again it could be someone else posting parcels with your address on. The risk is all with the person who receives it.

Why are you trying to exploit T sufferers for thousands of dollars? We're simply looking for some Trobalt. If you don't have any or don't want to send any, that's fine. Some of us just want to get better.

If anyone has any spare or has access to a reliable shop etc please get in touch.

 

[Cassandra]

Yes, as long as you can get a doctor to prescribe it off label. That's the hard part. Especially in Sweden where doctors rather not prescribe anything, let alone off label drugs.

I want to try it so badly
Is it possible to go abroad and bring it home haha

 

[Juan Carlos]

I just went to the pharmacy. I bought 4 boxes of 21x100mg. Its 13.85 euros each box
This ones expire on december 2015

 

[lapidus]

I want to try it so badly
Is it possible to go abroad and bring it home haha

Why don't you try getting it from a doctor first, before traveling?

 

[linearb]

He's saying it's illegal WITH a prescription.

yup, but that's not true. FDA does not recommend it, for quality control reasons, but it's not illegal:
http://www.fda.gov/Drugs/DrugSafety/ucm170594.htm

In the case where the drugs were originally produced in the US, and then exported, re-importing them is technically illegal, though that does not appear to be enforced -- so perhaps that's where this confusion comes from?
http://www.webmd.com/healthy-aging/features/letter-and-spirit-of-drug-import-laws

 

[rtwombly]

In the case where the drugs were originally produced in the US, and then exported, re-importing them is technically illegal, though that does not appear to be enforced -- so perhaps that's where this confusion comes from?
http://www.webmd.com/healthy-aging/features/letter-and-spirit-of-drug-import-laws

From that article:

The definition of "unapproved" includes "foreign-made versions of U.S. approved drugs that have not received FDA approval to demonstrate they meet the federal requirements for safety and effectiveness. It is the importer's obligation to demonstrate to the FDA that any drugs offered for importation have been approved by FDA."
Under those rules, it appears to be illegal to import into the U.S. the cholesterol-lowering drug Lipitor purchased in Canada, even though the drug is made in Ireland for shipment to both the U.S. and Canada. To make things even more confusing, the FDA guidance cites "circumstances in which FDA may consider exercising enforcement discretion and refrain from taking legal action against illegally imported drugs."

So Lipitor is made in Ireland for sale to the US, but if you import it from Canada, it's illegal, even though it's from the same supplier. Looks to me that no matter where you get it from, if it's outside the US, it's illegal, approved or not, prescription or not. When they say, "approved" they mean that the facility producing it is approved, as well as the drug itself, and they don't approve facilities outside the US.

But, the FDA realizes the law is stupid, so they don't enforce it.

 

[RCP1]

@Juan Carlos

Hi Juan Carlos. Does every Pharmacy in Spain sell the starter pack without prescription?

I've never had my suitcase opened ever before or after a flight. Surely bringing them back within Europe is no problem..

Anyone in Europe should be ok to get these.

R

 

[dan]

Why are you trying to exploit T sufferers for thousands of dollars? We're simply looking for some Trobalt. If you don't have any or don't want to send any, that's fine. Some of us just want to get better.

Did I say thousands? No I said 1 thousand - because that's how much it would cost me to travel to Spain for you and deliver for you a custom order of a s#%Tload of Trobalt thru customs. I think I'm being generous here! Have you ever seen the movie The Dallas Buyer's Club?
We should start one on TT

 

[dan]

I just went to the pharmacy. I bought 4 boxes of 21x100mg. Its 13.85 euros each box
This ones expire on december 2015

Can you ask the price of 100mgx 84 (eighty-four) pills please, if its not a bother for you. The reason I'm asking is because a person would need 6 boxes of the large size box (84) for a 3 month's supply on a 600mg daily dose including a short taper up and down period. (I calculated it as per the @benryu chart)
Thank you my Spanish amigo.

 

[Juan Carlos]

@Juan Carlos

Hi Juan Carlos. Does every Pharmacy in Spain sell the starter pack without prescription?

I've never had my suitcase opened ever before or after a flight. Surely bringing them back within Europe is no problem..

Anyone in Europe should be ok to get these.

R

Not every, some respect the law. Maybe i was lucky but the only two attempts to buy Trobalt were succesful in two different pharmacies.
I think that around the 50% of them sell any drug. If one donesnt do just go to another one, the chances are very high.
Just one advice: spend more than one weekday in spain because its a very uncommon drug so normally they dont have it and will order wich takes half or one day to come to be ready.
Yesterday they had only one box of trobalt 100mg and it was expired, so you can imagine..
I traveled a lot and only once my bag was opened, it was in japan

 

[Juan Carlos]

Can you ask the price of 100mgx 84 (eighty-four) pills please, if its not a bother for you. The reason I'm asking is because a person would need 6 boxes of the large size box (84) for a 3 month's supply on a 600mg daily dose including a short taper up and down period. (I calculated it as per the @benryu chart)
Thank you my Spanish amigo.

It doesnt exists, guess why i bought 4 boxes of 21?
Imho the reason is because 100mg is meant only for taper on or off, not for stable dosage. So its available in 84 pills the ones of 200, 300 and 400 mg. Btw every box and every pill different color

 

[dan]

It doesnt exists, guess why i bought 4 boxes of 21?
Imho the reason is because 100mg is meant only for taper on or off, not for stable dosage. So its available in 84 pills the ones of 200, 300 and 400 mg. Btw every box and every pill different color

Ok then please find out 200mg price, okay? Gracias.

 

[RCP1]

@Juan Carlos

Thanks very much. 50% strike rate is good. Just need to learn some Spanish now.

Cheers

R

 

[Philemon]

Sorry if I repeat myself but, in case it could be more convenient for some people, you can also buy trobalt in Italy without prescription (even if it's not legal), but if it's maybe less easy than in Spain ... i think i've called 6 or 7 pharmacy, one was willing to help me but couldn't find it from her usual providers, and the other one had to make phone call to several providers (after he checked with no success other providers on his computer) to finally get it and sell it to me (it seems that he had to order boxes from several places, some of them hundred kilometers away). Price in Italy for 84x100mg is 45 euros. hope this helps

 

[rtwombly]

i think i've called 6 or 7 pharmacy, one was willing to help me but couldn't find it from her usual providers, and the other one had to make phone call to several providers (after he checked with no success other providers on his computer) to finally get it and sell it to me (it seems that he had to order boxes from several places, some of them hundred kilometers away). Price in Italy for 84x100mg is 45 euros. hope this helps

Were you able to get it shipped or did you have to travel? I've researched the other side of import-export now and what I'm finding is that in the US and UK at least, it's illegal to ship a prescription unless you're a doctor or acting on a doctor's written request. It makes me wonder if a doctor could request a drug from one of these countries...but that would be a personal favor, no reason for them to bypass the pharmacies for a random patient.

 

[Philemon]

Were you able to get it shipped or did you have to travel? I've researched the other side of import-export now and what I'm finding is that in the US and UK at least, it's illegal to ship a prescription unless you're a doctor or acting on a doctor's written request. It makes me wonder if a doctor could request a drug from one of these countries...but that would be a personal favor, no reason for them to bypass the pharmacies for a random patient.

I went there twice (it's 'only' 250 kilometers far for me), first to order it, a week after to get it ... I didn't ask for it, but i'm quite sure they would never have sent it to me (and i had to give a deposit of 50 euros on my first visit there).
About doctors, I don't know, but i would be pretty much surprised if they could do so (and i guess pharmacies would lobby against that)

 

[valeri]

I went to see my gp and asked about retigabine. Even though it's not available here in Australia he wasn't opposed to the idea of trying it, even the info on his computer came up with being beneficial for tinnitus.
Go figure why it's not available for people to try

I'm just surprised that there hasn't been more trials done in the past.

 

[jazz]

I'm just surprised that there hasn't been more trials done in the past.

I think the "black box warnings" have prevented the drug from being tested for other indications.

 

[valeri]

I think the "black box warnings" have prevented the drug from being tested for other indications.

I can understand that but so severe side effects may be more relevant for epilepsy patients maybe.
Having something work for t should have been explored bit further, but I guess there's no urgency since it doesn't kill you

 

[James White]

I went to see my gp and asked about retigabine. Even though it's not available here in Australia he wasn't opposed to the idea of trying it, even the info on his computer came up with being beneficial for tinnitus.
Go figure why it's not available for people to try

I'm just surprised that there hasn't been more trials done in the past.

Retigabine is a new drug, only on the market since 2011

 

[dan]

@valeri , ok you asked me once -what can WE do as T sufferers.
Ok so its a no-brainer that Retigabine does seem to have a positive effect on tinnitus. So why don't we all on TT forum, sign an electronic petition to the ATA demanding a trial with Retigabine for tinnitus, so that it will be no longer OFF-LABEL for us poor souls. So it will be recognized as a treatment option of last resort after say anti-depressants, but will not have to beg for it.