Epilepsy patients hit by shortage of life-saving anti-epileptic drugs

People with epilepsy could be left without life-saving drugs due to a shortage of anti-epileptic drugs. Many pharmacies across the country are struggling to stock up on extended-release Tegretol tablets, which can also be used to treat nerve pain and bipolar disorder, as well as epilepsy.

The 200mg tablets, made by Novartis UK, are the branded version of the drug carbamazepine, which is considered a Category 1 epilepsy medicine by the Medicines and Healthcare Products Regulatory Agency (MHRA) – meaning patients should stay on the same version to reduce the risk of seizures and side effects.

People who are taking carbamazepine but need to switch to another epilepsy medication to control their seizures would usually be weaned off gradually while slowly increasing the new medication. But epilepsy patients across the country – including North Staffordshire – are being hit by supply shortages as they try to collect their medication – and are being told to contact their doctor ‘for an alternative’.

READ: Mum died from taking too much medicine for the epilepsy she developed after Covid

StokeOnTrentLive reporter Hannah Hiles, who was diagnosed with epilepsy as a 20-year-old university student, discovered the shortage when she picked up her monthly prescription from Morrisons Pharmacy in Newcastle with less one week supply. The 43-year-old mother-of-two was shocked to learn that her medication, which she has been taking since 1999, was out of stock – and there was no indication as to when it would be available.

She was advised to contact her doctor and she also phoned local pharmacies until she found one that had it in stock. A warning label on the medicine advises patients not to “stop taking this medicine unless your doctor tells you to stop”.

Hannah, who lives in Newcastle, said: “I was shocked and upset when I found out I couldn’t get my epilepsy tablets. It’s not as easy as being prescribed an alternative – people taking medication for epilepsy are advised to same type.

“An option could be to take a different strength tablet – Tegretol also comes in 100mg and 400mg – but this can affect the rate of absorption. It’s very stressful when you know what you need to do to keep your condition under control – I haven’t had an epileptic fit since taking these pills – and it suddenly became confusing.

“I was heartbroken that I could have run out of it in just a few days. I’ve never had a single problem getting my meds. I can’t bear the thought of potentially having another crisis after 23 years and losing my driver’s license and my independence I try not to worry too much about whether I will be able to get some next month.

Epilepsy affects around one in 100 people in the UK, meaning around 600,000 people are living with the condition – although figures are not available to show how many people are taking any particular medicine. Only 52% of people with epilepsy in the UK are seizure free, but it is estimated that with the right treatment, 70% could have their seizures completely controlled.

The national charity Epilepsy Action has updated its “Drugwatch” webpage to reflect the current drug shortage. He says: “We have recently received several inquiries about Tegretol supply.

“Novartis told us that they are in stock of all formulations and strengths, but are having issues with restocking Tegretol 200mg Extended-Release and Tegretol 200mg Standard-Release tablets. This may cause some wholesalers to run out of stock.

“Novartis hopes to resolve this issue by the end of May 2022. If your pharmacy cannot obtain this medicine from their usual supplier, you can ask them to order directly from Novartis Customer Services on 08457 419 442 or by e- email [email protected] If your pharmacy does not want to do this, you can ask them to return your prescription to you so that you can take it to another pharmacy.”

In a comment on the ‘Drugwatch’ page, epilepsy patient Lesley wrote last week: ‘My pharmacy told me there is a supply issue again with Tegretol Extended Release 200mg. They give me 11 days supply every 10 days.

“It’s very stressful. What is causing this problem please and will it ever be properly sorted out so we don’t have to keep going through this stress? We haven’t we not enough to deal with epilepsy?”

And Katherine added: “I had no problems before today but tried to get a new prescription for Tegretol Extended Release 200mg from my regular supplier. Boots can’t get it from the everything.

“I rang other branches and also tried another pharmacy and the online independent pharmacy, but none of them can get it at the moment. I only have a week left. ‘supply.”

Guidelines published by Epilepsy Action on what to do if you are unable to obtain your usual medications state: “If your pharmacist does not have your usual version in stock, you can ask to collect your prescription and bring it to another pharmacy. But if your usual version is not available anywhere, you may have no choice but to take a different version.

“If you’re worried about taking a different version, your doctor should be able to give you advice. For most people, it’s safer to take a different version of their medicine than to run out and stop taking medicine. suddenly.”

Pharmaceutical wholesalers Alliance Healthcare have confirmed that some customers may experience delays in obtaining their medicines. A spokesperson said: “We recognize that some customers may experience delays in obtaining Tegretol 200mg extended release tablets. Alliance Healthcare is working closely with manufacturers to ensure maximum supply of products to UK patients and will continue to do so until this situation is resolved.

A spokesperson for manufacturer Novartis UK told StokeOnTrentLive: “Novartis UK is aware of concerns over the supply of Tegretol 200mg extended release tablets. We can confirm that supply is again in line with demand.

“Outstanding stock issues across the range, caused by fluctuating demand and therefore short-term delays in manufacturing capacities, have been resolved through increased manufacturing capacity. We have also reached out to our wholesalers to ensure they have the stock they need so that supply is now back in line with demand.

“We have informed the Association of British Pharmaceutical Industries (ABPI) and the Department of Health and Social Care (DHSC) of the concerns raised to us. Our patients and customers are our number one priority and we aim to ensure access just and fair to our medicines, for the patients who need them, wherever they are and whatever their origins.”

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