Personal financial cost of your medication?

[bluelammy]

Hi everyone, Bluelammy here Hope everyone has had a good day, and is feeling ok.


While walking home the other day after picking up my medication a thought entered my mind that i'll mention a bit later.
Firstly just a few notes about myself.I am a 54 year old male, who has suffered from epilepsy for the past 39 years.I live in Liverpool,United kingdom. My daily medication for my epilepsy is 400mg of phenytoin and 2050mg of keppra.
To get to the point it's this, How much do you have to pay monthly for your medication?
The reason i'm asking this question is because everyone worldwide is having money problems because of the worlds economic problems.

After picking up my medication i realised that since being diagnosed with Epilepsy i have never had to put my hand in my pocket or spend a penny for my tablets. The reason is because of where i live and my condition, the government runs a national health service and caters for this type of problem. Also as an afterthought anything to do with my condition, eeg's, scans etc i have never had to pay for.
This question has probably been asked before,but i'm just curious about how much it costs you personally if you or a member of your family suffers from Epilepsy.

All the best Bluelammy.

p.s If i'm going to have a fit, I hope it's a fit of Laughter.

[Nakamova]

Hi bluelammy --

Here in the U.S. a lot depends on whether you have health insurance, and if so, what kind. My medication costs me $10 a month -- but that's because I have insurance that costs me $500 a month. If I didn't have the insurance, the medication could cost $1000 a month! So one way or another I have to fork over a fair amount of cash.

Without my insurance, other things would cost a lot more too: MRIs would run $2500 apiece, an EEG would be $500, and an office visit with a neurologist would be $200. With insurance these things cost a lot less, so in the long run it's probably worth the pain in my wallet.

[BlueSkies2220]

Sometimes i wish that people who have been diagnosed with chronic, lifelong conditions like epilepsy could get medical treatment for free here in the US. Its not fair that we have to fork out more money than the cost of living [rent and food combined] just to have medication and care.

Currently, i get my meds overseas with no scrip [and i wouldn't recommend this to anyone], costs me about 55$ for 6 months worth. I take the lowest possible dose, sometimes splitting my dose into a 50 mg/day dose when i run low. I also take supplements like vit. D, calcium, magnesium, A, and Folic Acid, plus Biotin. I haven't had a tonic-clonic in over 6 years.

My husband is currently paying anywhere between 700-1400 / mo for his care through insurance for his own medical problems..just imagine paying out over 3,000 for both of us for the cost of his insurance with me on his plan, plus cost of medicines. Add to that the cost of rent, gas, food...who's got 4,000 a month to spend? we sure dont.

And my medication makes me so tired, even when im on the lowest possible dose [about 100 mg Tegretol, daily on average]..so even when i have worked, i've had seizures at work, breakthrough partial seizures due to the stress of just being there and the schedule.

Currently I owe over 70,000$ to local hospitals who have taken me in when someone calls an ambulance on me, and i hate that since i just cant recall a time when it was ever necessary except for the first time that i had a tonic clonic.

Medicaid? yeah. They won't give it to me since Im not working on the books, and I'm childless. I can't afford dr. visits even though a neurologist who works with my husband offered to see me for about 70$ per visit. Tack onto that the almost 2yr probationary period for all new patients with epilepsy [where they suspend your license and its on your record for the rest of your life!], and i haven't had a tonic clonic seizure in over 6 years so it would be like paying him to take me back to square one....

Prior to that I took my own license away and didn't drive for two years, and used my medicine until i got consistent results. After two years of being seizure free, I applied to get my license back.


plus the over 400/mo on average cost of medicine.. can't afford it. Even if my medicine only costs me 10$ a month with patient assistance, the cost of seeing the neurologist to get the medicine, is way too much.

I work at home as a Tarot reader and that's fine with me. It helps out around the house and its just about the only employment that i can get in this town since i dropped out in the 6th grade and dont have a GED. Who wants to hire an epileptic with no HS diploma? At least im happy with the job that i have now .. i enjoy it and i work at my own pace - so anytime im tired, i can just go lay down.

In a small town with no opportunities...no one wants you on the job if you have epilepsy. Sure you dont have to disclose it but i've been at jobs who fired me, let me go, after i had a seizure when they changed my schedule, made me work extra hours and i had to put up with stressful situations.


Currently my husband is applying for disability, but they have denied him. he's got a lawyer helping him out. I wish i could get on it too but my seizure problem is easily controlled with the right dose of medicine, which i can't afford to get unless i get it overseas. talk about a rock and a hard place.

[epileric]

And my medication makes me so tired, even when im on the lowest possible dose [about 100 mg Tegretol, daily on average]..so even when i have worked, i've had seizures at work, breakthrough partial seizures due to the stress of just being there and the schedule.

How many times a day do you take your meds? If you take them only once a day have you tried splitting the 100 mg into 2 doses a day? It might (hopefully) lessen the side-effects. Do be careful if you do split them because it might cause a seizure if your body needs to get used to when your levels peak.

[BlueSkies2220]

I actually tried that for a while, but i found that if i took the whole dose before i went to work, things would be a lot better for me. Nowadays, i just take it in the morning and im good all day till the next day. 100 mg is a small dose

[Endless]

Sometimes disability is approved based on the side effects of meds. Do get a lawyer and see where you end up with it. The lawyer works on contingency - only takes a fee if they win, and they take their fee out of your backpayments from social security. It's worth a shot.

[bluelammy]

After just reading the replies so far to this post, I must admit I feel a bit guilty, sorry and angry for asking the question in the first place.
The reason being is because if i was any of you reading this post i would be feeling so bitter and angry asking myself "Why can't i be treated the same?" In the end we're all human beings suffering from the same condition with our problems to bare. All because of governments and policies, but lets not go there.
I have nearly always took for granted the way i was treated medically, but that's because of where i was born and brought up, and have never known any different. After reading some of your replies, and learning of some of the extra problems and pressures you have to put up with just because of where you live
I will never again think of the way i am being treated medically in the same way.Life can be so cruel at times, because in the end i am no different or better than any of you, we just share the same medical problem, and we should all be treated the same. Sorry wish i could help. Bluelammy

[BlueSkies2220]

After just reading the replies so far to this post, I must admit I feel a bit guilty, sorry and angry for asking the question in the first place.
The reason being is because if i was any of you reading this post i would be feeling so bitter and angry asking myself "Why can't i be treated the same?" In the end we're all human beings suffering from the same condition with our problems to bare. All because of governments and policies, but lets not go there.
I have nearly always took for granted the way i was treated medically, but that's because of where i was born and brought up, and have never known any different. After reading some of your replies, and learning of some of the extra problems and pressures you have to put up with just because of where you live
I will never again think of the way i am being treated medically in the same way.Life can be so cruel at times, because in the end i am no different or better than any of you, we just share the same medical problem, and we should all be treated the same. Sorry wish i could help. Bluelammy

Don't ever take it for granted - and don't feel sorry - that's just how it is in some countries. Heck, in some parts of the world, people with our condition are beat sensless as they are tied to trees, exorcised as if they have a demon inside of them. In places like that, medical care is just a dream. So we have to be thankful for every day that we live, and be thankful for what we have. You'll find that the cost of this condition varies according to region/type of care available/type of attitude that is held socially.

[Trinity]

Yes, if we were in Nazi Germany/Europe we'd likely be euthanized/exterminated.

[BlueSkies2220]

Yes, if we were in Nazi Germany/Europe we'd likely be euthanized/exterminated.

Here's an interesting fact that you may not know.. I didn't even know until yesterday - Harry Laughlin - the man who was responsible for eugenics records and laws during that era in America, had epilepsy, himself!!

"The director of the American Eugenics Record Office from its inception in 1910 to its closing in 1939. In 1922, he drew up laws for the compulsory sterilization of various "degenerate" groups, which included those with epilepsy. Laughlin himself eventually discovered that he suffered from epilepsy"

http://en.wikipedia.org/wiki/Harry_H._Laughlin

[CrunchyFrog]

In Australia we have the pharmaceutical benefits scheme (PBS) my medication is on the PBS which means it's significantly cheaper than what I would be paying if it wasn't. I don't qualify for any other benefits since I earn too much and am not on disability. Under medicare we can usually get a certain percentage of what we pay for GPs tests etc back but, you have to pay for it first. You can't claim on everything though and I haven't been able to claim anything for neurologists and MRI's so I've had to pay a small fortune for that plus ambulance bills which were each over $500.
Now that my Epilepsy is managed and I don't need frequent neurologist appointments and tests the financial cost isn't so bad especially thanks to the PBS. I think Australia we are lucky, we have a healthcare system that is under pressure and has it's problems but compared to other parts of the world we're quite lucky.

[Taylor's_mom]

I pay $6 per month 3 for keppra and 3 for zonegran.


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[Trinity]

CrunchyFrog - i'm in Australia too and I always get a percentage of what I pay for my neurologist back. Last time I paid $310 for my EEG and a consultion (combined price) and I received about $160 back from medicare. I know it's not everything but better than nothing. Have you checked with Medicare that you can't get back because I think you should be able to????