Question about stopping Keppra XR

[daisy.girl]

I have been on Keppra XR 375mg for 18 days (one 750mg split).
Since this is such a low dose.....do you think I could just stop it?

I have been having severe migraines, just about everyday since starting it, as well as allergic reaction too.

[Endless]

Hi, Daisygirl,

If you are having an allergic reaction you need to stop NOW, but ask your doc how to do it. Just stopping can be dangerous, and the allergy is definitelly dangerous. You need help with both.

I'm not on Keppra, but it's not a good idea to just stop any anti-epileptic drug. If a person isn't having an allergic reaction, weaning off a little at a time is definitely best.

I halved my 1500mg dose of Trileptal to start getting off it. Really BAD idea. I mean REALLY BAD. I had a few hellish days and nights. I wish I had a do-over. But since I don't, I'll just keep on going, but slower. I'll reduce another 150mg next week, and so on and so forth.

[Cint]

Call your dr. ASAP, especially since you think it is an allergic reaction! Don't ever stop taking an anti-epileptic drug cold turkey, otherwise you could go status and end up in the hospital.

I am currently taking 3000 mgs. Keppra, but so far that is the only drug that is helping me. Years ago, I took Felbatol, and it gave me severe migraines. My epileptologist lowered my dosage weekly until I was off that medication completely and the headaches were gone.

[daisy.girl]

thanks...
I have woke up with my face and eyelids swollen...even below my eyes. And my tongue has felt swollen too....like it is too big for my mouth.

But....as the day progresses the swelling goes away.

I skipped my dose today, and want to see if things are better in the morning. I will call my neurologist....

I really do think it is a reaction, almost the same thing happened to me on zonegran.

This will be the third anti-epileptic drug that I have had an allergic reaction to.

I was just wanting to know since I have only been on this for 18 days at 375mg....would I have withdrawal symptoms??

[Nakamova]

Keppra is one of the anti-epileptic drugs that people can load fastest into their system, so even though you've only been on it 18 days, it has had time to "get into your system." All the brain meds our powerful and can have unpredictable effects on any given individual. The safest way to taper down is to do so as slowly as possiblee -- otherwise you run the risk of experiencing unpleasant withdrawal symptoms (moodiness, etc,) and/or triggering seizures. Your allergic symptoms sound quite serious, so I recommend that you talk to your doctor ASAP about the allergic reaction and taper very slowly unless he says otherwise.

[daisy.girl]

Called my neurologist this morning and told them about my symptoms. They said yes it is an allergic reaction and to stop the Keppra.

Wow....that is 3 anti-epileptic drug that I have had reactions to.

At this point, I want to just stay off the anti-epileptic drug's. Anyone know the chances of me finding a drug that I am not allergic to??

Thanks for all your support!

[Nakamova]

Hi daisy.girl, I'm glad you got a quick response from the neurologist. Did they have any suggestions about what else to try? If you do try a new one, ask your doc about tapering on extra-slowly to minimize the chance of an allergic reaction.

[daisy.girl]

Really? tapering slowly can make you avoid an allergic reaction? I guess I just thought, if your allergic, your allergic...it wouldn't matter how slowly you tapered.

I was only on 375mg a day of the keppra XR...that is pretty low.

thanks for the info.....

my daughter is getting married this Saturday, so I am refusing any new drugs until after that. hopefully my head will quit hurting soon.

[Nakamova]

While everyone reacts differently (so there's no guarantee), a slow taper is recommended as one way to prevent/avoid allergic skin rashes. I think that the body can be sensitive even to relatively tiny doses of anti-epileptic drugs (this is my experience/opinion only), so that even the official tapering on/off guidelines can be too fast for some.

You might want to check out the link below. Among other thing, it says that the rate of allergic reactions correlates with the speed of titrating onto the anti-epileptic drug, and that it's best to "start low and go slow" if at all possible.

http://www.columbiaepilepsy.org/teen...ousAllergy.pdf

[Endless]

Hi, Daisygirl,

Statistics don't really mean much. It is just odds. It doesn't mean that you will or won't find another drug or have another allergic reaction. That said, look here for the odds of having a cross-sensitivity to other anti-epileptic drugs: http://www.neurology.org/cgi/content...act/71/19/1527

Some anti-epileptic drugs are chemically related. If you've had an allergic reaction to one type of drug they try to avoid giving you another type of drug that is related.

I've also been told that the chance of an allergic reaction goes up when certain anti-epileptic drugs are taken together.

I don't think tapering DOWN helps avoid allergies, but Nakamova is right - tapering UP slowly really does. It's how I was able to retry Lamictal, and got a lesser rash this time that in a couple of weeks just went away (with some steroid treatment).

[Bernard]

Really? tapering slowly can make you avoid an allergic reaction? I guess I just thought, if your allergic, your allergic...it wouldn't matter how slowly you tapered.

I know there is some research posted somewhere here in the forum that showed that the rate of introduction (tapering) for Keppra had a dramatic correlation with the incidence of allergic reaction. It seems that, yes, introducing it too quickly can trigger the immune system to over-respond.

[eagleman]

Had my first seizure after being off all drugs for 8 years now

Monday morning had a real biggie at sams.

This happened in the past. Todd's is in control now. No walking, let alone standing,

Will see a new neurologist this coming Mon....hope I'll be able to walk for my first appt.

Last 9 years been working out at 24hr fitness with out any problem.

What to do....last anti-epileptic drug was keppra....98-2000. Will take anything as Todd's parasis is the pits

John in Saint Charles,MO

[matchu]

Hi, Daisygirl,

If you are having an allergic reaction you need to stop NOW, but ask your doc how to do it. Just stopping can be dangerous, and the allergy is definitelly dangerous. You need help with both.

I'm not on Keppra, but it's not a good idea to just stop any anti-epileptic drug. If a person isn't having an allergic reaction, weaning off a little at a time is definitely best.

I halved my 1500mg dose of Trileptal to start getting off it. Really BAD idea. I mean REALLY BAD. I had a few hellish days and nights. I wish I had a do-over. But since I don't, I'll just keep on going, but slower. I'll reduce another 150mg next week, and so on and so forth.

Just stopping is extremely dangerous, yet an insurance medical plan or discount medicine plan can dictate wether or not your prescriptions are covered. I have this issue enough times that I decided to drop insurance all together. I could never get a grip on why these medicines are not delivered to patients with epilepsy that can't drive or do limited. It is jaw dropping going through the withdrawals and no one can seem to explain why your medicine is not being paid for. These individuals have no medical training what so ever and dictate one getting medicines needed. Requiring prior authorization this and that... Correct me if I am wrong but I assume the doctor prescribing my medicine and writing the script and signing it should be enough prior authorization. So you go through withdrawal from hell, including thoughts of suicide, then go through Keppra going back into your system as well.

Good luck and keep us in the loop.

[G Girl]

I have been self medicating ramping down due to a miscarriage I just had and freaking out over the generic Keppra XR killing the baby. So I started at 2500mg, then went to 2000mg, then to 1500mg, now to 750mg the last few days. I'm emotional but I also just lost a baby so that is making me more emotional so might as well pile it all on at once. I really want to get on regular Keppra XR just 500mg but it's too expensive now through my insurance since the generics came out. Over $1000 for 3 months and that's the copay price. I haven't told my neurologist that I am doing this I just want to have another healthy baby like I did on Keppra XR name brand. I know it's important to ramp up and down, so I'd just do the 375mg once a day and contact your doctor.

[Nakamova]

Hi G Girl,

You should speak to your neurologist and OB/GYN about this -- it doesn't make any sense that the generic would be any more or less harmful to your baby than the brand version would.

[momof3boys]

Im on 3000mgs of Brand name Keppra XR. Have you tried looking into getting a Keppra/Keppra XR savings card? I found this online and my dr also gave me a savings card that can save you $30 each time you get it filled for up to 12 times you get your prescription refilled.

Ive been taking Keppra XR since November 2010 and its helped me out alot. Especially with headaches. Prior to taking the Keppra XR I was on Keppra, and I was having horriable headaches and migraines. My dr switched me to the XR and within days I noticed a huge difference. I am on my husband's insurance through his work, and we go through express scripts for our medications. Right now, were paying $100 for a 6 month supply. I take 3000mgs a day, and my dr prescribed me 500mg tablets, so I take (3) tablets in the morning, and (3) tablets at night.

[momof3boys]

I forgot to add the website to find the Keppra savings card...

http://www.keppraxr.com/about/savings_program.aspx

[G Girl]

I have the card. For now my insurance is allowing me 4 months of the name brand and I have filed first and second appeals, external review, request for determination of medical judgement. All this to be told that the first review was denied but I got sent the second review denial letter by mistake, so was told I had to file for the external review but due to some loophole and revision of broad medical claims thing in government I am not eligible for an external review, and now there is no word about what's going on with the second appeal. I had horrible side effects with both generics - hives and anxiety with the first, and tingling/numbness with the second as well as seizures again, full blown panic attacks, extreme exhaustion, migraines, sleep paralysis, sleep apnea, and general craziness. And in the midst of this I got pregnant, which is why I just can't help thinking that something bad happened, because I had an infection and was taking erythrimycin for sepsis and temazepam for anxiety, and lots of ibuprofen, and increased the dose of the generic, and was having seizures. I know it doesn't make sense that this caused my baby to die but at the same time I haven't ever had a problem and I am just totally freaked out by it. And, if insurance is only grant to grant me 4 months worth and I take 1/4 the dose, I can have Keppra XR brand name for 16 months which would be long enough to conceive a child and have a healthy pregnancy. I'm still just mad and sad about the whole thing and tired of fighting the insurance company.

[momof3boys]

Thats terriable that the insurance company is only allowing the generic. My neurologist had to make my prescription that was sent to the insurance as "Brand Name Only". Otherwise they would have filled it with generic. I havnt had any issues with the insurance not covering name brand, as long as the dr marks it on the prescription. I hope you can get some answers soon and good news comes your way!

[G Girl]

Oh, and about the card... back before the generics were available, I could get 3 months of Keppra XR for $25, meaning that the card probably wouldn't even be accepted because then I would be owed $5. So, I've never used it. Because the cost would be over $1000 for 3 months of the meds, I'm sorry but to save $30 is just stupid. I flat out can't afford to pay that much money - it's about 7% of my entire annual pay and I am the breadwinner in my home (husbands stays home with our kid). I just really wonder because if the generics messed me up that bad how could it not mess up a kid that bad? And with the generics, there has not been enough people on them long enough for the anti-epileptic drug pregnancy registry to form a good report.