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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEpilepsyTeam Member asked a question 💭

Hi, I take tegretol xr and it needs to be the brand name not the generic. I am lucky enough to have a job where I have insurance and decent pay, but over the years the cost of this drug has been on the rise like everything else. Right now I pay $525 a month and I always worry about the what if’s. What if I did not have insurance what if I did not have enough to pay for this drug. I would need to take a generic and that increases my seizures. How does abotone else who’s treatment depends on… read more

January 18, 2023
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A MyEpilepsyTeam Member

ProudTx very good and insightful information.

January 19, 2023
A MyEpilepsyTeam Member

Thank you ProudTx for sharing that information. I didn't know you could call the Epilepsy Foundation for help. Take care. P.S. GO NINERS!!! 😁🤞🏈

January 19, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , If you wouldn’t be able to afford the brand name of a med & the doctor felt it was best that you take the brand instead of the generic, then you could contact the manufacturer of that pill & see if they have a Patient Assistance Program or offer a discount card or some kind of assistance. You would likely have to provide them with some information including income. Another resource is you could contact your local Epilepsy Foundation & let them know about your situation & see if there’s any way they could help you. They would likely need information as well, including income. Another option is using GoodRX, where you could go to the website www.GoodRX.com & compare the brand name prices to different pharmacies in your area. Can’t guarantee you’d be approved for the programs like the manufacture & the Epilepsy Foundation offers but you don’t know unless you try. You might try right now with the manufacture & see what they offer cause that’s sure a lot of money a month. It doesn’t hurt to try. I didn’t have any insurance & the manufacture of the Vimpat had been helping me get my Vimpat as has the Epilepsy Foundation & they helped me get my Depakote. I was put on my Epilepsy Foundation’s program where I paid $25 dollars a year & it covered my meds & a check-up with my Neurologist. I was recently approved for my disability & so now I’m going to be using my Medicaid & United Healthcare insurance to get my meds at my local pharmacy & will have one last appointment with my Neurologist that’s basically covered by the Epilepsy Foundation but luckily my Neurologist is on the “in-network” doctor list for my new insurance & so nothing will change with my Neurologist. Several years ago the manufacture of my Depakote helped get me my meds when I didn’t have any insurance & didn’t think back then to try asking the Epilepsy Foundation for help. Good luck. Your friend in Texas, Becky

January 18, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , Just sharing the resources I’ve used or know about. I have gone through the manufacture of my Depakote & Vimpat & gotten help to get my meds, I think the manufacture of my Trileptal gave me a discount card or something, the manufacture of the Vimpat, UCB, said I was approved for their Patient Assistance Program & that manufacture I think also has a discount card but I didn’t use that since I was approved for their program. I eventually reached out for help to my local Epilepsy Foundation & let them know my situation & you provide some information & then I guess they’ll let you know if you qualify. Your local Epilepsy Foundation can also possibly recommend a disability attorney or even maybe a Neurologist. A former team member who lives in San Antonio & has volunteered with the San Antonio Epilepsy Foundation & suggested I contact them & ask about applying for disability & he told me who to talk to at our San Antonio Epilepsy Foundation. They’re there to help us. I didn’t use to know they could help that much. Late in 2022 I went to San Antonio for a “Living With Epilepsy Conference” that the San Antonio Epilepsy Foundation had & I finally got to meet a few of the staff members who have helped me so much. So just passing on the info that I’m familiar with & have used. Your friend in Texas, Becky

January 19, 2023
A MyEpilepsyTeam Member

Luckily I dont need to worry about things like that in the u.k, good on you for having good insurance. I have to admit I am concerned the u.k is going to do the same. I can work and pay my weekly national insurance contributions which gos towards the national health service. For people that cant work, there are entitled too the service nationally provided.

January 18, 2023

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