Epilepsy Medication...

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Comments

  • asbokid
    asbokid Posts: 2,008 Forumite
    edited 9 June 2011 at 9:20PM
    Humphrey10 wrote: »
    the neurologist has chosen to prescribe me Keppra rather than the generic alternative, so again the NHS is choosing to pay for a more expensive medication, though I'm not sure why, I hope they have a good reason like they do with the insulin.

    You are being prescribed the proprietary Keppra because generic levetiracetam is not available in the UK.

    According to the Financial Times, levetiracetam went off-patent in the USA in August 2009. However, in Europe, levetiracetam remains on-patent. (GSK acquired UCB Pharma in 2009 in a €500m deal.)

    From http://bnf.org/bnf/bnf/current/89422.htm:
    Keppra® (UCB Pharma) pom_m.gif

    Tablets, f/c, levetiracetam 250 mg (blue), net price 60-tab pack = £29.70; 500 mg (yellow), 60-tab pack = £52.30; 750 mg (orange) 60-tab pack = £89.10; 1 g (white), 60-tab pack = £101.10. Label: 8
  • happyolddog
    happyolddog Posts: 29 Forumite
    Part of the Furniture 10 Posts Combo Breaker
    I've had epilepsy for about 20 years, it started after I had brain surgery to remove an arteriovenous malformation and an aneurysm which was bleeding. I was put on AED's (anti epilepsy drugs) I took as prescribed all of my medication with differing d=side effects, from double vision to increased seizures, finally after many years I was put on Keppra, also known as levetiracetam, which has been great, but all AED's have their set-backs and side effects. I am now finding that after 5 years on Keppra they are not controlling my seizures like they initially did and my dose has been increased. I don't think there is an easy fix for epilepsy as all sufferers have it for differing reasons, I would not advise the use of weed as some have earlier in the thread, I would though encourage you to seek the advice and opinions of as many neurologists as possible and if you're not happy with the neurologist you have it is up to you to ask to see another. I did and I shall be going for my next appointment on June 13th to arrange my next brain surgery, which I was not going to get the chance of if I stuck with my old neurologist.
    Good Luck.
    Liam.
  • asbokid
    asbokid Posts: 2,008 Forumite
    edited 9 June 2011 at 9:19PM
    Thea wrote: »
    Please dont quote bnf prices, its quite annoying.
    This is a consumer forum. Quoting prices is par for the course. If you find that annoying or more likely, embarrassing, then perhaps you belong on another forum.

    However, for the consumer, the cost to the NHS of a Prescription Only Medicine is extremely useful information.

    Since every prescribing doctor uses the BNF, the prices it lists for each drug, whether 100% accurate or not, are nevertheless a major factor in the prescribing pattern of the medic.

    The BNF helps to bring transparency to that crucial aspect of prescribing behaviour: cost.

    There is also another side to this argument. There are those who are being unnecessarily prescribed expensive proprietary drugs even though generic alternatives are available.

    Armed with drug pricing information from the BNF, those patients might be motivated to enquire why.... and that leads to the thorny issue of corruption of doctors by drug companies.

    I saw some UK statistics from the early-1990s and "Big Pharma" bribery was shown then to be commonplace. The corruption takes the form of "thank yous" to doctors who favour certain costly medications, over rival products. Even in the early 1990s, the bribery was running into many thousands of pounds a year, per doctor. Is that something you have encountered yourself, Thea?

    I would encourage others to review the drug information, including drug pricing data, published in the British National Formulary. It is completely free to subscribe: http://www.bnf.org
  • So he/she hasn't had an ECG at all? If not, why not?

    an ECG can prove that you have epilepsy,it cant prove however that you dont
  • asbokid wrote: »
    This is a consumer forum. Quoting prices is par for the course. If you find that annoying or more likely, embarrassing, then perhaps you belong on another forum.

    However, for the consumer, the cost to the NHS of a Prescription Only Medicine is extremely useful information.

    Since every prescribing doctor uses the BNF, the prices it lists for each drug, whether 100% accurate or not, are nevertheless a major factor in the prescribing pattern of the medic.

    The BNF helps to bring transparency to that crucial aspect of prescribing behaviour: cost.

    There is also another side to this argument. There are those who are being unnecessarily prescribed expensive proprietary drugs even though generic alternatives are available.

    Armed with drug pricing information from the BNF, those patients might be motivated to enquire why.... and that leads to the thorny issue of corruption of doctors by drug companies.

    I saw some UK statistics from the early-1990s and "Big Pharma" bribery was shown then to be commonplace. The corruption takes the form of "thank yous" to doctors who favour certain costly medications, over rival products. Even in the early 1990s, the bribery was running into many thousands of pounds a year, per doctor. Is that something you have encountered yourself, Thea?

    I would encourage others to review the drug information, including drug pricing data, published in the British National Formulary. It is completely free to subscribe: http://www.bnf.org

    a change from proprietary to generic can be devastating for some people with epilepsy some have seizures for the first time in years after such a change,personally i couldnt care less how much my drugs cost the NHS(and i now take 17 different drugs)i deserve the best that are avaliable not some down market copy
  • Thea
    Thea Posts: 150 Forumite
    Part of the Furniture Combo Breaker
    asbokid wrote: »
    This is a consumer forum. Quoting prices is par for the course. If you find that annoying or more likely, embarrassing, then perhaps you belong on another forum.

    However, for the consumer, the cost to the NHS of a Prescription Only Medicine is extremely useful information.

    Since every prescribing doctor uses the BNF, the prices it lists for each drug, whether 100% accurate or not, are nevertheless a major factor in the prescribing pattern of the medic.

    The BNF helps to bring transparency to that crucial aspect of prescribing behaviour: cost.

    There is also another side to this argument. There are those who are being unnecessarily prescribed expensive proprietary drugs even though generic alternatives are available.

    Armed with drug pricing information from the BNF, those patients might be motivated to enquire why.... and that leads to the thorny issue of corruption of doctors by drug companies.

    I saw some UK statistics from the early-1990s and "Big Pharma" bribery was shown then to be commonplace. The corruption takes the form of "thank yous" to doctors who favour certain costly medications, over rival products. Even in the early 1990s, the bribery was running into many thousands of pounds a year, per doctor. Is that something you have encountered yourself, Thea?

    I would encourage others to review the drug information, including drug pricing data, published in the British National Formulary. It is completely free to subscribe: http://www.bnf.org


    No i choose my words, correctly annoying. BNF prices are not just a slightly unaccurate, they are very unaccurate. Also gps use nice guidelines to prescribe, 9/10 times they have no idea what a drug costs.

    I work in a pharmacy and the customer is king. Whilst one person might understand why cheaper drugs are prescribed, some customers are adament that the cheaper drug does not and cant possibly work better the an expensive one. Have you ever tried explaining to a patient who has a nhs prescription why it is £7.40 for an item and not the £4 odd price in the BNF?

    Also, dont get me started on drug companies. All i can say is GAVISCON ADVANCE LIQUID.
  • Thea
    Thea Posts: 150 Forumite
    Part of the Furniture Combo Breaker
    woodbine wrote: »
    a change from proprietary to generic can be devastating for some people with epilepsy some have seizures for the first time in years after such a change,personally i couldnt care less how much my drugs cost the NHS(and i now take 17 different drugs)i deserve the best that are avaliable not some down market copy

    I cant agree that there are 'down market copy' of drugs. When a brand comes off patent it means any manufacturer can make that drug to the same formulation or rather receipe. But i do understand how you feel. There are numerous medications that are, and must only be prescribed by brand due to variations between brands. Some of the people i come across are switched back to brand medicines and rightly so if that what works for them.
  • asbokid
    asbokid Posts: 2,008 Forumite
    woodbine wrote: »
    a change from proprietary to generic can be devastating for some people with epilepsy some have seizures for the first time in years after such a change

    That's interesting. I have heard the same rumours, too. Of course, disorders like epilepsy are so unpredictable, it's impossible to prove empirically that a change from a proprietary drug to a generic was the cause of relapse. I'm not disputing that it is possible though..

    This from the LA Times in 2008...
    "Last December [2007], the American Epilepsy Society called on the FDA to approve a large clinical trial to determine "once and for all" whether the substitution of brand-name drugs with generics increases the risk of "breakthrough" seizures or toxicity among patients with epilepsy. This type of research would probably take years."
    http://articles.latimes.com/2008/mar/17/health/he-generic17
    http://articles.latimes.com/2008/mar/17/health/he-genericside17

    Of course the American Epilepsy Society, like most medical charities, has its own conflicts of interest. Much of the charity's income is from corporate sponsors. Those sponsors are the drug giants who make trillions of bucks from proprietary patented products. Big Pharma really doesn't like generics. The industry's funding of research which casts doubt on generic bioequivalence should be viewed with suspicion.

    Remember the maxim: he who pays the piper calls the tune.
  • savagej
    savagej Posts: 1,158 Forumite
    Is NICE policy not to have patients with Epilepsy kept on ethicals and not changed to generic unless it is a branded generic, especially in relation to sustained release formulations. Also in the US the FDA rate generic drugs along side the original brand and it is often found perhaps due to the excipients of the manufacteuring process of the tablet, caps, sustained release mechanism etcetera that they are often not comparable. Comparability should be the norm, but we know it does not exist as we know people who are taken off of Epilim Chrono and placed on an alternative sustained release sodium valproate preparation can start having fits. Also, you cannot be guaranteed the same generic drug everytime you go to the pharmacy, they simply buy the best deals on offer.
  • asbokid
    asbokid Posts: 2,008 Forumite
    savagej wrote: »
    you cannot be guaranteed the same generic drug everytime you go to the pharmacy, they simply buy the best deals on offer.

    There is no guarantee of 100% bioequivalence whether or not you buy from the manufacturer of a proprietary drug. Invariably production is outsourced to get the "best deal on offer" and different plants have different manufacturing procedures, etc..

    There was recently a lot of frenzied talk about "fake" POMs for sale in the UK. These were not actually counterfeit medicines at all. They were the real McCoy - genuine proprietary drugs that were legitimately manufactured under licence, and imported through grey market channels.

    Big Pharma doesn't like the grey market since it impinges on its vast profits. And so the Big Pharma PR men cooked up the propaganda that the NHS was sourcing counterfeit replicas when actually they were genuine drugs that were irregularly imported.
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