Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

Does Anyone know how long one has to take Trobalt/Potiga/retigabine to get to maximal effect?

 

[Christian78]

http://www.dailystrength.org/c/Tinnitus/forum/16807054-retigabine I was searchin around, and most of you know more about this drug then me but why are people on other forums such as i posted saying that this drug only "prevents" from chronic T and that it wont be useful for chronics that have had it for years. So far we have mpt with accute that it techniqually "cured", and ivan thats chronic that it seemed to change/help his T so far. I just cant believe others around the world didnt try this and share there experience on it. And the scientists in PA that tested it said it was only a preventable measure from getting tinnitus with the rats, therefore im thinking if this drug doesnt help the chronics then retigabine/autifony will at least prevent ours from worsening? Sorry just trying to figure all this out.----- with all this said, i hope autifonys long term side effects arent as bad as retigabine if were gonna be on it for a while with no help to our T and just using it for a preventible measure.

And no neurologist will give it for worsening... definitly, you can get worsening eny day, 3 times a week or something they will not give it for it, medical system is to slow...

 

[cullenbohannon]

Probably because it would have to be proven with a clinical trial that it would work. So far we have evidence that it could help acute cases from the rat trials. They have to have some evidence in order to say it will help chronic cases.
As encouraging as what we are seeing is. It's not quite proof.

http://www.dailystrength.org/c/Tinnitus/forum/16807054-retigabine I was searchin around, and most of you know more about this drug then me but why are people on other forums such as i posted saying that this drug only "prevents" from chronic T and that it wont be useful for chronics that have had it for years. So far we have mpt with accute that it techniqually "cured", and ivan thats chronic that it seemed to change/help his T so far. I just cant believe others around the world didnt try this and share there experience on it. And the scientists in PA that tested it said it was only a preventable measure from getting tinnitus with the rats, therefore im thinking if this drug doesnt help the chronics then retigabine/autifony will at least prevent ours from worsening? Sorry just trying to figure all this out.----- with all this said, i hope autifonys long term side effects arent as bad as retigabine if were gonna be on it for a while with no help to our T and just using it for a preventible measure.

 

[Christian78]

I admire your caouage, my T went up this afternoon as got used to 200mg x 3 per day, tonight starting 3 x 300...

 

[rtwombly]

Been giving the forum a miss as I look for work and try to find a doctor who'll prescribe me Potiga before my health insurance runs out, but I'm glad to see things are moving ahead. Hope Christian78 gets some positive results. It's a bad day for me, but this thread gives me hope!

 

[benryu]

I admire your caouage, my T went up this afternoon as got used to 200mg x 3 per day, tonight starting 3 x 300...

Hey Christian, while following the thread, I notice that your dosage increase seems pretty fast, much faster than what was recommended for me.
Can you share the dosage plan you have please ?

 

[Christian78]

like MPT 3 day 100, 3 day on 200, then normal dosage, but monitor urine don't get to dark, and you don't have urin retatnion, and those side effect if they come lower dosage to normal

MPT LETTER:

Hi Christian,

I started at 100 mg 3 times a day for 3 days, then 200mg 3 times a day for 3 days and then the dose I'm on now is 300 mg 3 times a day... I noticed a lowering after the first couple of days... after a week I could barely hear it

 

[benryu]

Quick comment because I see this question coming back a lot: acute vs chronic T.

From a cellular point of view there is a huge difference, and time does matter. This is why AM-101 is only for acute T. and blocks glutamate as well as protect dying hair cells.
This is also why corticosteroid helps a few hours after an acoustic trauma.

From a neurogical and functionnal (auditory system) point of view there is NO FREAKING DIFFERENCE between acute vs chronic T. if the drugs acts on the synaptic transmission, you could have had T. for 3 days or 300 years, it won't make a difference. Only plasticity cause a certain inertia.

 

[benryu]

like MPT 3 day 100, 3 day on 200, then normal dosage, but monitor urine don't get to dark, and you don't have urin retatnion, and those side effect if they come lower dosage to normal

MPT LETTER:

Hi Christian,

I started at 100 mg 3 times a day for 3 days, then 200mg 3 times a day for 3 days and then the dose I'm on now is 300 mg 3 times a day... I noticed a lowering after the first couple of days... after a week I could barely hear it

Ok Christian, the dosage is wrong, have you checked that with a doctor ? You seem to take too much and too fast, this is dangerous!

Thereafter, the total daily dose is increased by a maximum of 150 mg every week

http://www.medicines.org.uk/emc/medicine/24527/SPC/trobalt/

If you need dosage plan, feel free to use mine, it was validated by my doctor.

 

[dan]

Hey guys (and gals)... I'm totally shit-faced from having my belly up root canal molar pulled and stitches in my lip (2 hours in the surgeon's chair!), or I would be dumping my: "Next on the list Neural block of sympathetic nervous system at neck ganglia ref H"...to go straight at his Retigabine! But not in this condition...plus I'm supposedly heading for my "anti-depressant" 12,000 ft. mountains with my daughter a week from today! Sigh!!! This thread/treatment is getting better and better!

OK...For those who are asking or wondering about Potiga in the USA and what the cost is, go back to my post that was lost in the dust of a few days back!...It's available, it's online gettable, it's not to outrageous in price! All you need is a prescription (point a gun at your doc!) and you could get it. My doc has already said he will do it [yeah the one that still feels bad about giving me the big ramp up in T and H in 2006].

This is at the top of the post: HEY - GOOD NEWS ON PRICES! (USA)

I did more follow up today and found out some stuff, but first off the $$$ aspect (Even Telis will like this! )... Half the price c/o CVS pharmacy, and the 400 mg tablets! Here's the breakdown:
~ 30 tablets @ 400 mg = $280
~ 30 tablets @ 200 mg = $280
~ 30 tablets @ 50 mg = $142.50
So, the obvious target is the 400 mg tablets and cut to size!

Also what we are beginning to see is that a LOWER dose may work! Also for smaller people you should consider that anyway, as your plasma saturation levels will be significantly higher if you take 900 mg a day and you are 5 ft. tall and way 110 pounds, versus a 250 pound gori.... Ummm, big person.
Again see my later post on that aspect too.

To all you pioneers trying this...21 gun salute and a big THANK YOU!

Best, Zimichael

@Zimichael

I just called a CVS pharmacy in San Francisco and was quote $900 for 90 pills @300mg.

Can you please provide the address of the pharmacy at which you were quoted>?

thankyou

 

[111]

That would be difficult to answer. Each of the companies have other business activities - which could influence the potential upside of a clinical trial success. On the other hand, AUT00063 may not make it past clinical trials phase III - or even worse, it may end up being drawn from the market post clinical trial (hypothetically speaking). As I mentioned on Friday, Trobalt has been drawn from the German market because of (long term) side effects. Germany is the larget country in Europe - so think about the implications when the health authorities make such a call. I am not necessarily saying that Autifony is going to suffer the same fate; all, I am saying is you can never predict how things will turn out (in the world of finance). I have covered a great deal of financial information in the Auris Medical IPO thread which - from a financial point-of-view - goes to the very core of the matter...

I realize there are people who downplay the signficance of the side-effects (from Trobalt), but when a major economy such as Germany decides to pull a product from the market, patients should at least reflect on this (the product is not pulled for some random reason, after all). Anyway, I am not going to go into this any further. We all have our own decisions to make. I will be seeing the professor of neurology as mentioned, and then I will make a decision based on that. Until then, I don't really have much more to say on this matter.

Take care.

So which reason is the correct reason for removing this product from Germany, the above or below, does anybody know the facts on this one, the below seems a viable reason by the manufacturer to withdraw this product, and is stated so as being the reason, along with listing other drugs as well being withdrawn from the market in Germany, due to its new pricing process.



Economics & Country Risk
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Same-Day Analysis
First Price Negotiation Successful As Product Withdrawals Multiply in Germany
Published: 6/1/2012


Significance
Germany's statutory health insurance fund and UK-based AstraZeneca have successfully completed price negotiations for Brilique (ticagrelor). Meanwhile, GlaxoSmithKline (UK) has announced the withdrawal of its epilepsy drug Trobalt (retigabine) due to a negative pricing prospect.
Implications
Brilique is the first to go through the new pricing process. Price negotiations for the drug were based on a positive early benefit assessment score, crucial to achieving a potential price premium. Contrary to Brilique, Trobalt would have been reference priced against generic products due to a negative incremental benefit level.
Outlook
The new pricing process clearly favours medicines that bring an added benefit, and could—against all expectations—reward innovation in a fair manner. However, the reform has already proved to be a barrier to market access for certain products that fail to demonstrate an added value against the appropriate comparator.

Trobalt Withdrawn from Market

Although innovative medicines can expect a price premium over alternatives, products deemed to bring no additional benefit have high chances to see their price aligned to an alternative generic under the internal reference pricing system. This has prompted a series of product withdrawals that does not bode well for market access in Germany. The latest being UK-based GlaxoSmithKline which yesterday (31 May) announced that it has decided to withdraw its epilepsy drug Trobalt (retigabine) after "careful consideration" due to a negative pricing prospect, reports the German newspaper Deutschen Apotheker Zeitung. The drug will be pulled out of the German market on 1 July. The decision comes after the G-BA ruled in favour of an inclusion of Trobalt into the reference pricing system; a decision which would have resulted in the granting of a reference price similar to that of appropriate comparators lamotrigine and topiramate, which both have generic price levels (see Germany: 9 May 2012: Trobalt, Rasilamlo Bring No Added Benefit According to G-BA).

The withdrawal of Trobalt is the fourth product removal since the introduction of the new pricing process. It follows the removal of US-based Pfizer's Dupuytren's contracture treatment Xiapex (collagenase clostridium histolyticum) and Swiss pharma Novartis' high blood pressure treatment Rasilamlo (aliskiren + amlodipine; see Germany: 18 May 2012: Pfizer Announces Withdrawal of Xiapex from German Market). Another example of the negative impact of the new pricing process on market access is Boehringer Ingelheim (Germany)'s decision not to launch its Type 2 diabetes medicine Trajenta (linagliptin) due to a disagreement on the appropriate comparator. Boehringer is so far the only firm known to have not launched its product because of AMNOG. The four freshly approved medicines have gone through early benefit assessment and were granted negative innovation scores qualifying them for reference pricing.


this is the link to where the above is from

http://www.ihs.com/products/global-insight/industry-economic-report.aspx?id=1065968289

 

[mmacabre]

Duude that's a crappy reason for Grmany to have withdrawn it. Of course it won't be as price effective as lamotrigine (lamictal) because lamictal is aggresively marketed worldwide for treatment of bipolar disorder and as an anticonvulsant. Seems like this was even before the warning of eye/skin side effects. That was in 2013 and germany withdrew it in 2012. Lame, in my opinion. Not even for health reasons just bc it wouldn't make big bucks.

Edit: oh shit, just realized that it was glaxo who withdrew it not germany itself. Bastard pharma!

 

[Zimichael]

!!!!???? WTF ~ Would someone please tell me how you "quote" someone without the whole darn message box filling up with their quote and my answer...yeah, yeah, I must be an old fuddy duddy.

@dan... The quotes were from my CVS Pharmacy in Ukiah, California (2 hours north of SF).

OK now you all know where I live if you are secret Hell's Angel and did not like my call to Harley Davidson a few weeks back about their darn motorcycles being TOO LOUD...And have you heard the way they "purposely tuned" their new electric street bike to sound "cool"!!! It is going to be hell on wheels for people like me. Sounds like a bloody jet engine coming down the road. (Time magazine then YouTube) So I gave their PR people an earful a few weeks ago and have been expecting "bikers" at my gate ever since.

Where was I...told you I was a fuddy duddy!

Dan...CVS should have standard price country-wide...but I can tell you, when I got the prices from the lady there (who knows me pretty well by now from my "undiagnosed illness" days) it was so much less than the compounding pharmacy (Myers - you can look them up online too) that I got pretty jacked up AND as you have seen in my posts am hopping to get my scrip filled as I don't want to suddenly find out the drug has been pulled or something.

So here's what may be happening. It could be two things actually...

1. She screwed up and gave me mis-quotes. But I don't think so, as we commented on how common it is for a drug to cost the same for much higher mg size, and why not just cut the pill in half or whatever. I did this for years, even with 'pellet caps'. It's a much cheaper way to go and my doc just made out regular quantity but highest mg size offered and I took it from there. [This works for a lot of meds except enteric coated and/or very exacting quantities, etc....If in doubt ask the pharmacist...and you have to be good at cutting or measuring!]

2. The pharmacy lady knows that I had no insurance for years and always asked for the "cash price", which was often if not always staggeringly lower than the "normal" price. This is one of the most open secrets in the country...Just about EVERY drug company AND pharmacy chain does discount drugs (or free drugs) if you ask and say you have low income! Seriously...So she probably quoted me the "cash" price as she said she had already checked with Blue Cross and it was not covered so I would have to pay (and she knew I was not Telis...Hi Telis! Kidding of course)...and she knows I always do the lowest rate cash thing.
BUT I WILL PHONE HER AND RE-CHECK TOMORROW JUST TO MAKE SURE! Will get back to let you know.

OK FYI here's another way: I could get Potiga free from GlaxoSmithKlein right now if I did not have insurance drug coverage....which I now do c/o Obamacare!!!... A classic "Catch 22" as Potiga is not in my insurance company's formulary! Which is no surprise as there are scads of other safer anti-convulsants out there to choose from. And yes I already phoned Patient Assist at GSK, and no they do not give it away if you have any drug coverage insurance policy. Here's the links: http://www.gskforyou.com/ and https://www.bridgestoaccess.com/

For a smorgasbord site for any drug try these folks: https://www.pparx.org/en/prescription_assistance_programs

All the Big Pharma companies have these programs. I got stuff free from a number of them and one smaller company (Romark ~ makes Alinia an anti-parasitic) did not even want my 1040 tax form as proof of income! In some ways it's better to not have insurance! Weird I know.

OK, that was a way long answer I know...but lastly, @benryu why don't you just get the Potiga from the USA as a reverse of what the Americans do in Canada, getting cheaper drugs up there? If my CVS prices are right it is not too bad for a "test the waters" taper up trial?!

Best, Zimichael

 

[coolbeer]

I can get this drug easily in india, as a chemist guy is a fellow friend of mine, but am really scared to try it , i am just 3.5 months in with my noise induced tinnitus , i think i will wait 1 month more before i try it, because currently am on homeopathic treatment for tinnitus , which seems to be working

 

[Johno]

I admire your caouage, my T went up this afternoon as got used to 200mg x 3 per day, tonight starting 3 x 300...

Your T went up - this means your T is louder after 200mg of Trobalt? What kind of T you have, noise induced, or other?

 

[lapidus]

Your T went up - this means your T is louder after 200mg of Trobalt? What kind of T you have, noise induced, or other?

I think he meant that his T went down but went up again to it's original level when the drug wore off.

 

[Viking]

i'm not undestanding!

 

[EddyLee]

That's what i understand too. Christian's T went down 30-40% when started 200mg and then back to base and he wants to start going for 300mg. Hope and pray for Christian that his T gone just like mpt.

I think he meant that his T went down but went up again to it's original level when the drug wore off.

 

[EddyLee]

i'm not undestanding!

Hi Viking how's your T now? Good and steady?

 

[Viking]

Hi Viking how's your T now? Good and steady?

Yes! is good and steady but i'm angry because i can not find any neurologist willing to give me this treatment according to the national health system. Trobalt in Italy is not indicated for the treatment of tinnitus. My prescription obtained from a retired neurologist is only valid for 2 boxes. I am very sorry for this. I'm working to eliminate Rivotril hoping that all these efforts are not in vain. On August 5, I will try another neurologist accredited by the national health system. He is currently on vacation. Let's hope so ...

 

[EddyLee]

Really great to know your T remains good! Just 2 boxes? So are you still taking Trobalt now or you already finish 2 boxes?

Hope and pray for you friend. We are all behind you!

Yes! is good and steady but i'm angry because i can not find any neurologist willing to give me this treatment according to the national health system. Trobalt in Italy is not indicated for the treatment of tinnitus. My prescription obtained from a retired neurologist is only valid for 2 boxes. I am very sorry for this. I'm working to eliminate Rivotril hoping that all these efforts are not in vain. On August 5, I will try another neurologist accredited by the national health system. He is currently on vacation. Let's hope so ...

 

[Viking]

I'm still taking Trobalt 100 from last Friday. I still have another 16 pills + box 21. I intend to continue spending my own pocket but I need a prescription from a neurologist.

 

[Hudson]

I'm still taking Trobalt 100 from last Friday. I still have another 16 pills + box 21. I intend to continue spending my own pocket but I need a prescription from a neurologist.

You, good sir, need to move mountains and see a neurologist. Science wills it.

Supposedly my doc is looking into it for me too.

 

[Viking]

Dear @Hudson , I'm just doing that. it is very difficult to convince a doctor. They do not want responsibility, and prescribe only what they know! I wish they would read the potential of this molecule. Among other things, this is a bad time because many of them go on vacation.

 

[Zimichael]

Yeah Viking...August in Italy!!! Geez I wish you the best of luck and sure hope something comes through for you.

@Christian78 ...How's it going today??? Are you adjusting your taper up and slowing it down even though you may be getting a different T response??? After some bade expereinces with meds I strongly agree with @benryu to slow it down.

Keep us posted guys. Thanks much... Zimichael

 

[Hudson]

Dear @Hudson , I'm just doing that. it is very difficult to convince a doctor. They do not want responsibility, and prescribe only what they know! I wish they would read the potential of this molecule. Among other things, this is a bad time because many of them go on vacation.

I wish doctor's had the sense of urgency about things that we do. Often, they do not in my experience.

How's your tinnitus today?

 

[Viking]

I wish doctor's had the sense of urgency about things that we do. Often, they do not in my experience.

How's your tinnitus today?

They are limited to their knowledge and until there will be a "congress" they do not expose themselves to new therapeutic approaches. Tinnitus is the same as the past few days, perhaps a little more pronounced on the left. I continue with my 100mg per day, reducing the Rivotril 2mg to 1mg and then 0.5

 

[Zimichael]

PRICES! - Clarification for you @dan

Those CVS prices are accurate - Today! I just called and verified.....BUT!....Yeah that infamous "but".

- I did indeed get quoted the "cash discount price".
- The "cash discount price" is different in different regions!!!
- Potiga may even be lower at a CVS in the poorest parts of the Ozarks, and much more in Silicon Valley, than the prices I was quoted here.
- The prices are only guaranteed for when they are made as drug companies can change them at will...which makes me nervous of course! (And maybe CVS can decide to change them too if someone shines a light on a discrepancy!)
- If I order the med today, they will only hold it on the shelf for me for two weeks max, by regulation requirement.
- Seeing as I'm about to head to the Sierra's within a week or so, I am going to have to just wait and hope it does not go up as I don't want to buy it and then wait three weeks, as much more info will have come in by then c/o our intrepid "testers" here on the site. It's possible it may not look so rosy in 3 weeks. And yeah $280 is a meaningful amount of $$$ for me to not throw away.....But, but, I may still just get it if I ask my doc to phone it in. ["undecided emoticon here!"]

IMPORTANT!...Hey a favour please. If you pursue this please try and do it without screwing up my drug deal up here OK? Ha ha...If they look too hard they may say "Hey, why the hell is Ukiah three times cheaper than San Fran and it's only two hours away???!!!" I would not be a happy camper. So just try the "cash price please?" approach and leave Ukiah out of it. Or come on up and get it here. You can stay the night at my place (if you don't smoke or snore ).

If you want to talk to me via phone, contact me via 'Conversation'.

Hope that helps... Best, Zimichael

 

[Christian78]

Your T went up - this means your T is louder after 200mg of Trobalt? What kind of T you have, noise induced, or other?

depressive mediceine, ototoxic appertently with my hearing nerve all os ok, just little bad hearinrg

 

[Zimichael]

Hey @Viking don't drop that benzo too darn fast!!! It can really trigger big time 'feci' like anxiety and so on. Plus it may well have an impact on your tinnitus as they do tend to calm it somewhat for a lot of us.
Slow is safer with BOTH these drugs!!!
Take care...(and my morning coffee is really wearing out. This retig' thread & research is too darn addictive and bad for my chores list!) Zimichael