I've been on Keppra for 9 days. A few days ago I started itching on my lower stomach and my right eye. I thought nothing of the tummy itching. Maybe dry skin (hey, it's Phoenix and dry is a given around here) and the eye was probably allergies.

Today I actually LOOKED at my lower abdomen and there was a rash. A raised, red, bumpy, OMGOSH, rash. And my eye is still driving me nuts. So I looked all over online about Keppra side effects. It said if you get a rash, "no matter how small or mild" to "call your doctor immediately." So I called the dr and was told to quit the Keppra NOW. And that I had to go in to see her on Monday (the PA was the one who called). I said, "I will have seizures all weekend if you take me off the Keppra and I had a grand mal this last time to which you guys said all my seizures will now be grand mal."

The PA said, "Yes, we realize you will have seizures. You'll have to take precautions." I said, "You don't understand. I have a SYRINX in my cervical spinal cord. That's a pocket of brain fluid that has severely damaged my spinal cord. My neck can snap extremely easily. And if I"m flopping around like I did last Saturday - ONE TIME - I'm in danger. I CAN'T go cold turkey." He explained that they have to stop the reaction because it is known to cause a condition where the skin will literally peel away.

The lesser of the two evils is I live with skin peeling away as opposed to dying from a fragile spinal cord. He said he'd call me back and went to talk to the dr. He called back and they called in another anti-seizure med. I couldn't understand what he said because his accent is very, very thick. It began with a B and almost sounded like "bitmap" though I know that's not it.

I also told him this rash is like the rash I get when hospital tape touches my skin. It spreads til we stop it with steroids. Last time I had the rash spread from belly button to knees from having one piece of hospital tape over an incision on my stomach. I ended up getting two big time shots, a topical cream AND a medrol dosepack of prednisone.

I told the PA I happened to have a dose pack of prednisone and asked if I should take it. He said, "Yes of course, take it." He was making decisions on the fly and I finally said, "Look, I have 7 diseases, I take handfuls of medicine each day, you need to be SURE about things - I'm not your normal patient." He said he was sure and that I was to call if there were any problems.

(sigh). Anyone else ever have the rash reaction to seizure meds? I can't take Gapapentin (Neurontin) or anything in that family because of psychosis, and I'm kind of freaking out right now. I HATE that I'm this sick and I can't just be an easy fix. I already figure I'll end up in the ER this weekend...

I just called the pharmacy. The new drug is Vimpat.

Raigne,

I think you should also ask about this new issue—in a new/separate thread so it'll be emphasized—on the epilepsy forum. I read your current thread there, and last you reported the Keppra was working quite well.

I think your doctor needs to be made aware that there are (potentially serious) communication problems here.

How to Prevent Communication Breakdowns in Medical Settings

A Heavy Foreign Accent, a Liability?

Doc

Hey Doc, yeah I'm going to talk to her on Monday or Tuesday about the Vimpat (even with my insurance - Medicare (I'm on Social Security Disability) is $88.00 Uhhhhhh I fill 9 other scripts a month and they add up to under $10.00... I can't afford $88.00 a month. Hoping she will also not get offended when I tell her I had an EXTREMELY hard time understanding the PA's thick accent. Even when he spelled it out I couldn't understand him. A lot of it is me - everyone sounds like they are in a tunnel these days, but he was calling me from outside where the wind was blowing hard, his accent and my hearing problem. It was a disaster.

She shouldn't; on the contrary, she should thank you for bringing a serious matter to her attention. As the articles show, this is a well-known, documented, growing problem everywhere—not just in her office. If she responds defensively/negatively, you might show her those articles (I don't recall the exact search terms I used, but there were many more similar articles).

I don't know if the Vimpat is supposed to be a long-term alternative to Keppra, or just a temporary measure until you see your doctor again. I hope there may be some information here to help...

can't afford vimpat

Doc

I take Keppra and have never heard of that reaction "if you get a rash call the dr immediately " Here are the side effects ... there is another drug cant think of the name that causes a real serious rash and to stop . anyway here are the side effects of Keppra
http://www.drugs.com/sfx/keppra-side-effects.html

Lamotrigine is the drug I am referring too , about the rash


Drug information provided by: Micromedex

It is important that your doctor check the progress of you or your child at regular visits, especially during the first few months of your treatment with lamotrigine. This will allow your doctor to change your dose, if necessary, and will help reduce any unwanted effects.

It is important to tell your doctor if you become pregnant while using this medicine. Your doctor may want you to join a pregnancy registry for patients taking a seizure medicine.

You should not start or stop using birth control pills or other female hormonal products while you are taking this medicine until you have consulted your doctor.

Tell your doctor right away if you have unusual changes in your menstrual cycle such as breakthrough bleeding while taking lamotrigine and birth control pills or other female hormonal products.

This medicine may increase the effects of alcohol and other central nervous system (CNS) depressants (medicines that make you drowsy or less alert). Some examples of CNS depressants are antihistamines or medicine for allergies or colds; sedatives, tranquilizers, or sleeping medicine; prescription pain medicine or narcotics; ; medicine for seizures or barbiturates; muscle relaxants; or anesthetics, including some dental anesthetics. Check with your doctor before taking any of the above while you are using this medicine.

Lamotrigine may cause blurred vision, double vision, clumsiness, unsteadiness, dizziness, or drowsiness. Make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not alert, well-coordinated, or able to see well. If these reactions are especially bothersome, check with your doctor.

Skin rash may be a sign of a serious unwanted effect. Check with your doctor immediately if you or your child develop a rash, fever, flu-like symptoms, or swollen glands, or if your seizures becomes worse.

Lamotrigine may cause serious allergic reactions affecting multiple body organs (e.g., liver or kidney). Check with your doctor right away if you or your child have the following symptoms: fever, dark urine, headache, hives, muscle pain or stiffness, stomach pain, unusual tiredness, or yellow eyes or skin.

This medicine may cause some people to be agitated, irritable, or display other abnormal behaviors. It may also cause some people to have suicidal thoughts and tendencies or to become more depressed. If you, your child, or your caregiver notice any of these side effects, tell your doctor or your child's doctor right away.

Check with your doctor right away if you or your child start to have a stiff neck, confusion, drowsiness, fever, chills, headache, nausea or vomiting, rash, or sensitivity to light. These could be symptoms of a rare and serious condition called aseptic meningitis.

Hey Razzle, thank you for that info. I found the info about the rash both from my insert from Walgreen's Pharmacy and from here:

http://www.webmd.com/drugs/drug-1805...me=Keppra+Oral

And when I called my dr's office they told me to stop immediately because while rare, what I have going on could be the rare "skin peels away" rash. I go in Wednesday morning early for talks and testing and to make a gameplan.

At this point in my disease-filled life (7 diseases), if anyone is going to have the weird, rare reactions it's gonna be me. I hate it that my immune system is so jacked up, but it happens and I just have to play the cards I'm dealt and keep going. I'm no shrinking flower when it comes to being my own advocate with dr's. Someone has to speak up for patients and I'm from a medical family so I'm really good at asking questions, demanding answers and making sure things are being done correctly. Plus, I call home when I need help handling things and my family tells me what to do. LOL Plus, my husband is always ready to jump in when needed...I just rarely need it. LOLOL

It wasn't obvious from that link (not your fault—just the way webmd's website is programmed) without clicking on the "Side Effects" tab. For others finding this thread via goggle/search...
Doc

Many drugs have the potential to cause the dramatic and deadly "peeling skin" rash. Some more than others. (exfoliative dermatitis and/or Stevens Johnson syndrome)

If this shows up in studies, the warnings are given more sternly, but many simple drugs all have the potential for causing this.

So some sites have expanding rash warnings just in case.