Epilepsy Medication News
The Yellow Card Scheme for reporting side effects should be used if you have adverse reaction to any medicationShortages
Carbagen SR (prolonged release carbamazepine) tablets are out of stock in all doses. Mylan, the makers of Carbagen SR, does not know when it will have these tablets back in stock.
Standard release Carbagen tablets are in stock in 200mg and 400mg doses.
If you usually take Carbagen SR, speak to your GP, epilepsy nurse or epilepsy specialist for advice. You may need to temporarily switch to a different version of carbamazepine until Carbagen SR is back in stock.
Epilepsy Society report
- 20/08/2019 - Gabitril shortages to last to end of October
- 20/08/2019 - Epilim and Frisium should be back in stock by end of August
- 13/08/2019 - Milpharm Topiramate 25mg out of stock
- 9/8/2019 - Shortage of Epanutin® (Phenytoin) 30mg/5ml Oral Suspension
- 6/8/2019 - Gabitril tablets are currently out of stock
- 2/8/2019 - Temporary delay in delivery of Epilim and Frisium
- 26/7/2019 - More batches of Vimpat 100mg Tablets recalled by MHRA
- 28/6/2019 - Vimpat 100mg tablets have been recalled by Medicines and Healthcare Products Regulatory Agency
- 3/5/2019 - Shortage of Epanutin Infatabs 50 mg will now last until November 2019
EMA medicine safety committee recommends stronger restrictions on use of sodium valproate in women of childbearing age The new recommendations say that for women with epilepsy, sodium valproate should not be used during pregnancy. However, the recommendations acknowledge that in some women with epilepsy, it may not be possible to stop using the medicine. This is because it may lead to breakthrough or worsened seizures, which can be harmful to the woman and baby. In this situation, the recommendations say women should have appropriate specialist care. In women of a childbearing age, the recommendations say that sodium valproate should not be used unless measures are taken to help the woman avoid becoming pregnant. The PRAC suggests that a pregnancy prevention programme should be created for this. The pregnancy prevention programme would assess the potential of a woman becoming pregnant, depending on her circumstances. It would suggest pregnancy tests are taken during the treatment as needed. The committee says counselling should be provided about the risks to pregnancy as part of the programme. It also suggests that there should be annual reviews of the treatment. PRAC recommends that a risk acknowledgement form should be introduced, for people to go through with their doctors at each review. Alongside these recommendations, the committee has also said that there should be a visual warning on the medicines’ packaging. They recommend a symbol or a pictogram. A reminder card should also be attached to the packaging to help pharmacists discuss the risks of valproate. The committee is also calling on companies marketing the medicine to provide updated educational materials.
Ask for repeat prescriptions in plenty of time to allowm for the continuing problems in supply
People with epilepsy are being urged not to leave it to the last minute to get their prescriptions for anti-epileptic drugs (AEDs) dispensed. The National Society for Epilepsy inform that recent press reports havey highlighted shortages in supply of some drugs to UK patients which, it is claimed, are being sold overseas for higher prices.They (NSE) are urging patients to present their prescription to their pharmacist well before they run out of their medication.NSE’s chief pharmacist Janet Clark said: “There have been problems with the supply of some AEDs for a little while. Pharmacists are aware that there are alternative ways of obtaining the drugs to ensure continuity of supply but this can take an extra day or so. I would urge patients not to leave getting their prescriptions to the last minute.The medicines and healthcare regulator, the MHRA, has issued guidance aiming to reduce future problems with the export of medicines for profit.
Anyone wanting to talk about this or any other issues regarding epilepsy can contact the Epilepsy Society's helpline on 01494 601400 or visit the website athttp://www.epilepsysociety.org.uk
Cannabis based medication
The National Institute for Care and Clinical Excellence have now issued draft general guidelines for the use of cannabis medicines. These do not recommend the use of these products for the treatment of epilepsy.Guidelines for use in Lennox- Gastau and Dravet syndromes are expected by December
Although there have been several reports of cannabidiol (CBD) being effective in some forms of childhood epilepsy, no no licenses have been so far granted by the MHRA in the UK . There are trials in progress in America, but until the results are available we won't know if it has promise as an epilepsy treatment. Even if it does show potential, many more follow-up studies will be necessary before it can be approved by the FDA (the medicines regulatory body in the US); and further studies still will be needed before the MHRA (the UK medicines and healthcare regulatory body) will licence it. The reports to date are certainly compelling, but the numbers are too few to serve as robust evidence. It would be unethical for Epilepsy Research UK comment on the effectiveness of the treatment of epilepsy at this stage. In the absence of rliable research there is no reason to believe that they will prove effective in eliminating or controlling seizures.
The latest trials of cannabis in the treatment of children with epilepsy suggest a pure form of the drug may be of benefit. But Professor Helen Cross of Great Ormond Street Hospital, London, stressed that the benefit may be no greater than that of one of the new, standard anti-epileptic drugs.Speaking at the 31st International Epilepsy Congress in Istanbul, she said there was a lot of interest in the use of cannabis in treating seizures but that more tests were needed to evaluate the safety and efficacy of the drug. ‘We have to be particularly concerned about the effects of the drug on the developing brain in children,’ she said.For a more detailed explanation of the possible benefits and risks in the use of cannbis oil ead more from Epilepsy Research UK
Automatic Generic Prescribing
What are generic and branded drugs?
Understanding the differences between generic and branded anti-epileptic drugs (AEDs) could make a difference to the effectiveness of your treatment. Switching from a braanded drug to a generic drug, or switching between generic drugs could cause side effects or a breakthrough seizure.Anti-epileptic drugs (AEDs) aim to prevent seizures from happening. To be most effective, they need to be taken every day, at around the same time. They are not like a short course of treatment (such as antibiotics) and are often taken for many years.
Every drug has a generic name. This refers to the active ingredient in the drug (the part of the drug which works for the reason you take it). For example, carbamazepine or sodium valproate.
How similar are generic drugs?
MHRA (Medicines and Healthcare Regulatory Authority
What are the concerns about switching between drugs?
What can I do if I am worried about my drugs being changed?
Talk to your neurologist
Talk to your GP
Talk to your pharmacist
Get to know your medication!
HELP AND BENEFITS
The advice given is obtained from The Epilepsy Society who have wide experience in these matters
What Help Is Available?
You are entitled to free prescriptions for your epilepsy medications. You may be able to get financial help towards the cost of travel to medical appointments and to work. You may also be entitled to discounted bus, rail and tube travel in some areas. You may be eligible for some welfare benefits and tax credits. If you need support with daily living or equipment, an assessment from social services may be helpful. There may be help available if you care for a person with epilepsy.
Your entitlements will depend on what your epilepsy is like and how it affects you. The information below includes contact details and links to sources of information and help.
People with epilepsy are entitled to free prescriptions for their anti-epileptic medication, as well as for any other prescribed drugs (but not dental treatment or eye tests). This is called 'medical exemption'. To apply for free prescriptions in England, fill in the form FP92A, available from your doctor's surgery. It is important to carry your medical exemption card in case you are asked to show this when you collect your prescription. In Scotland, Wales and Northern Ireland all prescriptions are free.
NHS low income scheme (LIS)
If you are on a low income or benefits you may be able to claim back some of your costs of travelling to some medical appointments, under the Healthcare Travel Costs Scheme (HTCS). The Low Income Scheme may also cover some dental and eye care costs. Call the Low Income Scheme helpline on 0300 330 1343 for details.
Some equipment designed specifically to help people with disabilities does not include VAT. For example, you may not have to pay VAT on a seizure alarm system.
Call the HM Revenue and Customs Helpline on 0300 200 3700 for information, or visit hmrc.gov.uk.
Discounted public transport
If you have epilepsy and are still having seizures you may be entitled to free or discounted travel. This is usually because you would be refused a driving licence if you applied. You will usually need some proof that you are eligible for the discount, depending on where you live and the rules of the discount scheme.
Bus and tube travel
- England:If you have had a seizure in the last year, you should be eligible for a free national bus pass. Some councils have additional travel discounts. Contact your local council for an application form or visit uk for more information.
- London:You may be entitled to a Freedom Pass which gives free bus, train, tram and tube travel in London. Call 0300 330 1433 for more information. Some boroughs have a London Taxicard Scheme for reduced cost taxi travel. Call 0207 934 9791 or visit gov.uk for more information.
- Merseyside: you may be eligible for a National Travel Pass. Call 0151 227 5181 for more information.
- Scotland:The 'National Entitlement Card' gives you free travel throughout Scotland. Contact your local authority (or Travel Card Unit in Strathclyde) for an application form, or call Epilepsy Scotland's Helpline on 0808 800 2200.
- Northern Ireland: People with epilepsy are eligible for a Half Fare SmartPass for discounted bus travel. Visit gov.uk
- Wales: People with disabilities are eligible for free bus travel throughout Wales. Contact your local authority for details.
You may be eligible for a disabled person’s railcard. This gives you, and a companion, a third off most fares. Call 035 605 0525 for more information.
Some coach operators, such as National Express, offer discount fare schemes for people with disabilities. Contact companies directly for more details.
Access to work
If you are unable to use public transport because of your epilepsy, you may be able to get financial help towards the cost of your transport to and from work, through the Access to Work scheme. Contact your local Jobcentre Plus office for more information.
You may be entitled to benefits, depending on how your epilepsy affects you. This might include Employment and Support Allowance (ESA), Personal Independence Payment (PIP), Universal Credit and Attendance Allowance. You will need to meet certain requirements in order to qualify for these benefits.
The following organisations can provide information and advice on benefits:
- DIAL UK/Disabled People's Organisationsor call 0808 800 3333. Local disability support groups, who may offer independent benefits advisors who can help with completing forms.
- Turn2usor call 0808 802 2000. Help with accessing benefits, grants and other financial help, including a benefits calculator.
- Citizens Advice Bureau(CAB) or see your local phone book for your nearest CAB office. Information on benefits.