Retigabine (Trobalt, Potiga) — General Discussion

#5,131
Christian78 said:
I wonder did anyone got some help from Keppra?
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I think most positiv reports about Keppra is regarding theire Hyperacusis. But as stated before, Viking said it lowered his T about 20-30%. Now, DannyBoy has taken both Trobolt and Keppra and it would be interesting to hear from him what part he believe Keppra played in his success of lowering his T.
 
#5,132
grate_biff said:
I think most positiv reports about Keppra is regarding theire Hyperacusis. But as stated before, Viking said it lowered his T about 20-30%. Now, DannyBoy has taken both Trobolt and Keppra and it would be interesting to hear from him what part he believe Keppra played in his success of lowering his T.
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I dont know is anyone in contact with Viking?
 
#5,133
I finally got my ENT to prescribe me Retigabine, Potiga as it's known in the United States after a lot of convincing. But another road block has been placed in front of me. The health insurance company denied paying for it and my doctor did a pre-authorization and again denied. There is an appeal process but the representative said that they follow the guidelines and it usually is only covered for seizures if you are diagnosed with them by a neurologist.

What should I do? I can't afford over 1000 dollars a month that the Rite Aid told me it would cost. Is their anyway to convince the insurance company? How did members here get Potiga covered by insurance in the United States? Did you have a neurologist say you had seizures even if you didn't? If I tell them it's for tinnitus will I be flat out denied? Should I say it's for bipolar as a mood stabilizer since I've taking seizure meds for that in the past that was covered?
 
#5,134
sonicboom2000 said:
I finally got my ENT to prescribe me Retigabine, Potiga as it's known in the United States after a lot of convincing. But another road block has been placed in front of me. The health insurance company denied paying for it and my doctor did a pre-authorization and again denied. There is an appeal process but the representative said that they follow the guidelines and it usually is only covered for seizures if you are diagnosed with them by a neurologist.

What should I do? I can't afford over 1000 dollars a month that the Rite Aid told me it would cost. Is their anyway to convince the insurance company? How did members here get Potiga covered by insurance in the United States? Did you have a neurologist say you had seizures even if you didn't? If I tell them it's for tinnitus will I be flat out denied? Should I say it's for bipolar as a mood stabilizer since I've taking seizure meds for that in the past that was covered?
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Its not possible to convince insurance company. You are lucky enough to get doctor prescribe it to you off label. Sorry to say but you have to pay out of your own pocket. Why would it cost 1000$ montly? What dosage and how many boxes have you been prescribed?

Definitely don't say its for tinnitus if you got seizure meds in past covered by insurance, try that route once again.
 
#5,135
sonicboom2000 said:
What should I do? I can't afford over 1000 dollars a month that the Rite Aid told me it would cost. Is their anyway to convince the insurance company? How did members here get Potiga covered by insurance in the United States? Did you have a neurologist say you had seizures even if you didn't? If I tell them it's for tinnitus will I be flat out denied? Should I say it's for bipolar as a mood stabilizer since I've taking seizure meds for that in the past that was covered?
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try:

http://www.internetdrugcoupons.com/

you can print the card, take it to the pharmacy in the US and at least get 200 to 300 dollars off that price
Also try to get 200 mg pills not 100 mg in the long run is cheaper
 
#5,136
sonicboom2000 said:
I finally got my ENT to prescribe me Retigabine, Potiga as it's known in the United States after a lot of convincing. But another road block has been placed in front of me. The health insurance company denied paying for it and my doctor did a pre-authorization and again denied. There is an appeal process but the representative said that they follow the guidelines and it usually is only covered for seizures if you are diagnosed with them by a neurologist.

What should I do? I can't afford over 1000 dollars a month that the Rite Aid told me it would cost. Is their anyway to convince the insurance company? How did members here get Potiga covered by insurance in the United States? Did you have a neurologist say you had seizures even if you didn't? If I tell them it's for tinnitus will I be flat out denied? Should I say it's for bipolar as a mood stabilizer since I've taking seizure meds for that in the past that was covered?
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Gosh! It's only 140 pound per a month for 400mgx84 and that'll last a month. Can't believe that pricing.
 
#5,137
dan said:
Martin, do you think TRT clinicians would be happy if a cure was found tomorrow?
Would big pharma be happy if Cancer was cured by baking soda?
I would not put too much stock in what he says other than TRT advice and referrals.
I think its great he is here to direct sufferers to TRT clinics around the world, but he admitted himself just 2 days ago, TRT is a business and tinnitus makes a whole lot of people a whole bunch of money....
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Hi @dan I guess I missed that post re Dr Nagler saying it is a business money maker
Please could you post that post of his re money making business as I would like to read that
thanks a lot
 
#5,139
i got a gp to write me prescription for potiga.. but he wants me to take a egk test to make sure my heart is good...would my insurance cover it? as the gp is not my actual gp but some one my family knows.
 
#5,140
sonicboom2000 said:
I finally got my ENT to prescribe me Retigabine, Potiga as it's known in the United States after a lot of convincing. But another road block has been placed in front of me. The health insurance company denied paying for it and my doctor did a pre-authorization and again denied. There is an appeal process but the representative said that they follow the guidelines and it usually is only covered for seizures if you are diagnosed with them by a neurologist.

What should I do? I can't afford over 1000 dollars a month that the Rite Aid told me it would cost. Is their anyway to convince the insurance company? How did members here get Potiga covered by insurance in the United States? Did you have a neurologist say you had seizures even if you didn't? If I tell them it's for tinnitus will I be flat out denied? Should I say it's for bipolar as a mood stabilizer since I've taking seizure meds for that in the past that was covered?
Click to expand...
buy from canada I did and it worked out fine with the prescription you have
 
#5,141
Danny Boy said:
Gosh! It's only 140 pound per a month for 400mgx84 and that'll last a month. Can't believe that pricing.
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Believe it. We get the least benefit for the most cost. It's all about money here: Big Ag, Big Oil, Big Pharma

I would add another one: Big Insurance

"The United States ranks dead last in the quality of its health-care system when compared with 10 other western, industrialized nations, the same spot it occupied in four previous studies by the same organization. Not only did the U.S. fail to move up between 2004 and 2014 -- as other nations did with concerted effort and significant reforms -- it also has maintained this dubious distinction while spending far more per capita ($8,508) on health care than Norway ($5,669), which has the second most expensive system."

http://wapo.st/1p7YiJE
 
#5,142
dan said:
Sorry Amandine honey, I cant find it....tried.
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I just had a look through his posts to see if I could see such a posting from him but cant find it either
However one thread I was looking through had a lot of posts deleted apparently (I have not been on here for ages so didnt see it all) and this now closed for further postings
However think it is only fair to say that if saying someone said something etc that it should be provable otherwise it is not fair on that person is it
Just want to be fair to everyone is all
@Danny Boy from reading this it looks like you are off the trobalt completely now? Is that correct?
By the way, believe you said way back that have to wait till T is in the brain before taking trobalt as it would not work till then so taking it early would not be a good idea - it is confusing is it not? thanks for all input

So if Trobalt is the only thing that we can take guess I am going to have to drive to Spain to go and buy some there

good reports from @Presleys who is now trialling it
 
#5,143
amandine said:
However one thread I was looking through had a lot of posts deleted apparently (I have not been on here for ages so didnt see it all) and this now closed for further postings
However think it is only fair to say that if saying someone said something etc that it should be provable otherwise it is not fair on that person is it
Just want to be fair to everyone is all
Click to expand...
If I remember correctly, what Dr. N said was that all healthcare was a service industry. The post was deleted and the thread locked because he then became abusive. From memory, so not proof. :)
 
#5,144
Xorthian said:
Its not possible to convince insurance company. You are lucky enough to get doctor prescribe it to you off label. Sorry to say but you have to pay out of your own pocket. Why would it cost 1000$ montly? What dosage and how many boxes have you been prescribed?

Definitely don't say its for tinnitus if you got seizure meds in past covered by insurance, try that route once again.
Click to expand...
My doctor wanted me to start slow, start at 300mg a day (100x3). I guess they don't make 100mg pills since he prescribed me 160 50mg pills for the month costing over 1000 dollars says rite aid. :(
 
#5,145
sonicboom2000 said:
My doctor wanted me to start slow, start at 300mg a day (100x3). I guess they don't make 100mg pills since he prescribed me 160 50mg pills for the month costing over 1000 dollars says rite aid. :(
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Here man!!! ( prices are in Canadian! - thats like pocket change for you Americans)
Screenshot_2015-07-08-11-22-12(1).png
 
#5,147
#5,148
#5,150
Prescriptions now a days are all sent via computer to the pharmacy. It's not like I have a written prescription on a piece of paper to take to send the Canadian Pharmacy? And isn't it illegal to get drugs from Canada this way? I doubt my doctor would be willing to fax them the prescription.
 
#5,151
My Dr. will write out prescriptions manually when I want some drugs from Canada. Then I scan and email. Some no longer take credit cards though and you must do a ACH. It was the credit card companies that stopped that for some reason.
 
#5,152
sonicboom2000 said:
Prescriptions now a days are all sent via computer to the pharmacy. It's not like I have a written prescription on a piece of paper to take to send the Canadian Pharmacy? And isn't it illegal to get drugs from Canada this way? I doubt my doctor would be willing to fax them the prescription.
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They accept old school doctor's prescription. Its NOT ILLEGAL!
Your doctor writes you a hand written prescription and you take it by hand. Then you find a fax machine.
Kapish?!
 
#5,154
Nucleo said:
A big wtf @ 84x 50 mg for 148 and 84x 100 for 149.

Double trobalt for 1$ more.
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Packaging, overhead/accounting, demand and supply, formularies. Makes me wonder, though, what the actual cost to manufacture retigabine is, and just how much markup Big Pharma is sticking to people who have the misfortune to need this drug.
 
#5,155
Cheza said:
Packaging, overhead/accounting, demand and supply, formularies. Makes me wonder, though, what the actual cost to manufacture retigabine is, and just how much markup Big Pharma is sticking to people who have the misfortune to need this drug.
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Packaging? Lmao u mean like a 3cent blister pack?
 
#5,156
dan said:
Packaging? Lmao u mean like a 3cent blister pack?
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Yeah, like a 3 cent blister pack, if indeed it is only 3 cents once it makes its way through the supply chain, plus the package insert, salespeople, marketing if any, recouping cost of research, attorneys for patent protection, in-house counsel for liability, et cetera, et cetera, ad nauseam. And the other things I mentioned. It can cost almost as much to package 6 oz as 12 oz of any product once you factor everything in.

You know that nothing is sold at merely the cost to manufacture, especially not brand-name drugs, and especially not from a company like GSK that needs to cover its azz for all its other products like Zofran being dispensed to the population, as well as fraud litigation. I did mention Big Pharma and markup, didn't I?
 
#5,159
preslys said:
Now I have only 20 tablets I have to decrease de the dosage to 200mg/day
we will see the result
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Could you sum up maybe

1.how long you took it
2.what dosage you started
3.when you increased dosage
4.how it affects your T
5.how fast it works for you
6.how long it works for you
7. did higher dosage had a lot higher effect on you?
8. any side effects from heart for example?
 
#5,160
@papu @Xorthian


At the beginning I took 400mg/day (one pill after breakfast another after dinner) my central tinnitus disappeared three days later I increased the dose to 600 / day (1.5 pill of 200g after breakfast another 1.5 pill after dinner) this dose significantly decreased my tinnitus.Now my tinnitus doesn't bother me
I feel nothing as a side effect.
 

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