Generic brands

[Gemgemsxx]

Hello

I've had epilepsy since I was about 12 years old and it was controlled with Lamictal not lamotrigne. However 4 months ago I had a twenty/thirty minute absence so went to see a neurologist. Initially we increased lamictal but I ended up poisoning myself so had to reduce the dosage back to the original .

I then tried the generic version of Clobozam but reacted to that so stopped it .

I'm now taking the generic version of Keppra and the pharamist is starting to worry me. My gp has prescribed levetiracetam but the pharmacist is saying that she can't guarantee she can give me the same levetiracetam each time as many companies make it.

Does anyone switch between brands/companies on this drug? I'm so nervous about having further seizures as I can't afford to lose my driving licence again as its a real killer.

Many thanks

[happy48]

Information I received from Epilepsy Society and Epilepsy Action have told me that pharmacists aren't obliged to provide the same version of a generic drug. If it is a branded version your GP should put the brand name on the prescription and this should be prescribed every time. Hope you find this useful. x

[Lou_Lou_17]

I had this happen to me. I rang my GP surgery refusing to take the generic tablets. A new prescription was issued that day without argument and I have never had that happen again.

[AmyBadd]

Yes, it's the doctor you need to talk to.

With your driving licence though - I believe that if you had an absence seizure you should have had this taken off you. It is not safe for you to be on the road. You are a danger to yourself and everyone else. If you have ANY seizures when awake you are supposed to submit your licence. It doesn't matter what type.

Amy

[Gemgemsxx in reply to AmyBadd]

Don't worry I have already handed in my license. My worry is that should I get a different generic formulation that it would cause a seizure. Which wouldt then mean I'm back to square one in terms of the 12 months.

[AmyBadd in reply to Gemgemsxx]

I understand. Sorry I didn't mean to lecture, but I worry that some people are too flippant about driving with epilepsy. I think I am in a better off position as I have never learnt to drive, so although I find it a pain, I am used to getting the bus to work and walking to the shop!

[Gemgemsxx in reply to AmyBadd]

From experience I think once you have been able to drive and own a car you miss it more. This time I'm in a terrible state as I can't get anywhere quickly. Fortunately my doctor wrote a letter for my Access to Work grant so I now get a taxi both ways as it is in such a remote location. It doesn't help with day to day things but I do also have my disabled bus pass!!!

[JSJ58]

I had been warned not to accept any generic brands as there was no guarantee as to the stability of the quantity of active drug. Even the slightest change could cause problems. My consultant was kind enough to write a letter to my GP and my notes now make it clear that no generics are to be used. On one occasion, when the surgery pharmacy didn't have any branded, drugs, I had to go on a wild goose chase to track some down. After this incident the surgery pharmacist ordered a second set for me to have as a reserve. I have on more than one occasion had to resort to them. I haven't had any problems since - touch wood.

[Steph72]

My pharmacist has been very accommodating. After initially fufilly my prescription with another brand (which I returned). They now always order from the same supplier so the generic version is always the same.

I didn't have to provide a letter from my gp or consultant.

I worry about keeping the same brand of I move area.

Also your all entitled to free prescriptions...

[AmyBadd in reply to Steph72]

Thanks for pointing out about the free prescriptions. I have known that for years now, but my doctor didn't tell me straight away, which I think is pretty disgusting!!

[Steph72 in reply to AmyBadd]

My doctor didn't tell me ether. My mum told me...She's a nurse

[Gemgemsxx in reply to Steph72]

Mine didn't either! I found out through the chemist .It's so cheeky!

[6002athome]

About a year ago I went to a talk on generic brands at a London hospital. Sometimes the change is not the active drug but the compounds they mix with it. Seemingly in some people the change in these ingredients can trigger seizures.

I too had a pharmacist tell me that I should accept the generic brand of my drug. Without the knowledge gained in that talk I would not have felt confident to argue against her.

I now have a named brand on my prescription and my seizures are generally well controlled.

Go back to your doctor and ask for a named brand that suits you.

[Katiex]

Hello hope you don't mind me asking but how where you diagnosed ?

[Gemgemsxx in reply to Katiex]

When I was 12 years old or this time round?

[Katiex in reply to Gemgemsxx]

Just wondering if your tests results came with epilepsy or whether you got diagnosed by description of your seizures?

[Gemgemsxx in reply to Katiex]

This isn't going to be a particularly helpful answer as I don't remember. I think initially it was diagnosed by the description of jerks, fits and absences but confirmed by an eeg a little bit later on. I had a relapse when I was 20 so had an mri and eeg and that confirmed I still had juvenile myoclonic epilepsy. Now I'm 27 and I've had the two scans again and as far as I am aware from the results last week I still have JME. Overall I think it's a combination of the two as my neurologist also spoke to my boyfriend who was with me when my latest attack happened.

Have you had a similar experience?

[AmyBadd in reply to Gemgemsxx]

Your experience sounds a lot like mine. I also have JME with tonic-clinic, myoclonic jerk and absence seizures. It started about age 14 (in fact just after I started my periods, so I'm convinced the change in hormones was a factor) and I was not controlled until I was put on epilim Chrono aged about 21. Was not put on this for a long time because it can cause problems in children of pregnant women and I was a young women below child bearing age. I got put on it when other options ran out, and it is known to be one of the best AEDs for JME.

Now I am pregnant with my first child aged 29. Everything seems fine, although I lowered the dose before getting pregnant to reduce the risk. I have had one seizure and increased the dose very slightly during pregnancy. My midwife told me that by this stage (nearly 3rd trimester) that this is common because the large increase in blood volume causes the drugs to be more diluted. Never taken genetics though.

[Gemgemsxx in reply to AmyBadd]

Sometimes I wish I was male so I could take epilim and bring the guess work to an end! However, I have my fingers crossed the new medication works. I'm confident it will.

I think you're really brave carrying a child when taking epilim so well done and good luck :). You must be so excited to have a little one arriving soon

[AmyBadd in reply to Gemgemsxx]

Yeah I am very excited! Especially now it's got to the stage it feels very real, with an obvious pregnant belly and feeling the baby move regularly! I went down to 800mg a day and now am back up to 900mg, but that's still a pretty low dose. There is still a risk, but there is a risk for everyone who has a child. The risk is only increased very slightly if you take epilim.

[Lj08]

This happened to me I was given lamotrogine but it was made by a different company and I suffered with headaches all month, I wasn't sure at first but I do think it is because I'm taking a tablet made by a different company.

[Barney1942]

Hi there you have to state that you require Generic branded tablets specifically for epilepsy don't be fobbed of with basic tablets speak to your doctor or specialist about this if in doubt.

[Dragon14]

I stay on the same one and make sure I get the same one all the time. My pharmacy makes sure they give me the same brand each time. Levetiracetam 750 mg Tab. mine are a dark peach not the light one. I believe rif you can to stick to the same brand. I will find out for you the name. from Dragon/Welsh Lady