Help with a strange rash - Keppra XR related?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Koda1021

New
Messages
49
Reaction score
0
Points
0
Hi Everyone!
I posted a while back about going on generic Keppra XR. I'd been on the brand name for nearly a year and a half, then decided to try the generic because of cost. It didn't work, as I wound up feeling horrible (everything from mania to fatigue, etc.) I've been back on the brand med a little over a month now, but something odd is happening.
I had my six month checkup last Tuesday with my doctor and I mentioned that I feel fatigued all the time. No energy, can sleep 20 hours a day if given the time. No desire to do anything and even said I feel a bit depressed (and in my situation, no reason for depression...good job, boyfriend, life is good!) She upped my Zoloft to 150 mg and the only thing she said, is that if the fatigue is still prevalent in six months that we may consider switching to Lamictal (I've never tried it). I was a little disappointed, because I don't bring things up if they aren't bothersome and I haven't been feeling well. Just blah.
About two weeks ago, I got what I thought was a cold. Sore throat, fever, chills, coughing. It lasted a while and included eyes watering constantly. Then a week and a half ago, I got a hives-like rash. Now, I've gotten quick rashes before that go away quickly, this one though hasn't gone away and only got worse. My boyfriend at one point said my back looked bruised and purple. The itching has just gotten worse and worse then last night my mom took a look and was shocked. There were tons of bullseye type lesions, most bloody from me scratching. It's all along my back, my neck and now on the front of my chest.
I called the neuro office and the patient line person was rather rude. She said "oh, you have a rash, go to your primary physician". I was upset and said how can my GP figure out if it's related to the Keppra? then, she tells me she will "give" the info the doctor, but that Monday is their busiest day. She goes on to say if I don't hear from the doctor in a timely manner, to go to the ER.
So, I went this morning. Being aware of Stevens Johnson, I marked down that I have epilepsy and am concerned it is the beginnings or an allergic reaction. The nurse comes in and says "do you even know what SJS is??" and I said yes, I do..and she yells at me that it looks like burns which mine doesn't! I tell her, yes, at later stages, but it can also appear in early stages as bulls eyes, lesions, etc.
Long story short, they take my blood and doctor contacts my neuro. He comes back in and says "I do not believe it's SJS" then tells me to take Benadryl. I tell him I prefer not to and he proceeds to show me that there are no interactions, so I politely tell him while the literature says it's ok, that Benadryl in general can reduce seizure threshold, so I ask, what then? If I take the Benadryl, will that be the end of it? and he has no answer. He tells me the neuro doesn't want to change my meds, he doesn't "believe" it's SJS and here I sit at home, nauseous and brain dead from the Benadryl, and still itching! The redness has gone down, but itching is still there. Lastly, he tells me to see a dermatologist.
So, am curious if anyone has any experience with rashes related to meds. Thing is this, I got up at 8 am this morning, took my meds, and had nothing else, within two hours of taking the meds, the rash flared up. Later in the ER (still having had nothing) the rash got bright red, and burned to where my skin was actually hurting me! Nothing environmental has changed for me (soaps, etc.) and the ER basically told me nothing of value, so I'm a bit upset, uncomfortable and confused. I'm also questioning whether I need to now try to find an epileptologist, as my neuro just doesn't seem to be as well versed in epilepsy as I thought. For instance, I mentioned at my checkup that I have a ringing in my ears almost constantly that I have gotten used to. I looked it up on the Keppra site and while a "rare" side effect, it is listed...she didn't even know that!
So, I'm just a bit frustrated. Thanks in advance for any suggestions or advice!
 
It's not unusual that your neurologist wouldn't know all the side effects for a given med -- usually they check their reference manuals for info like that, rather than having it memorized. But if your doctor's attitude seems arrogant, or her office was unhelpful, or if you're generally not happy or comfortable with your neurologist, you should feel free to find another.

As for the rash -- it does sound like it's an allergic reaction to the medication. The vast majority of allergies to anti-seizure medications are not SJS. But since there's no way to know on your own, a dermatologist is actually the best doctor to see (unless of course things are serious enough to require an ER visit). The dermatologist can determine what kind of rash it is, and what the best treatment may be. Often with medications like antihistamines or anti-depressants which can potentially lower seizure threshold, it's a tough call as to whether to use them in treating someone with epilepsy. A good doctor -- whether in the ER, or a GP, or a dermatologist, or a neurologist -- will take the time to discuss the pros and cons, and any alternative treatments that may be available. Unfortunately, good doctors are often hard to find.

When did you start taking the Benadryl? Did the doc give you a sense of how long it might be before the rash starts to dissipate? Since the redness has gone down, it sounds like things may be going in the right direction. If you don't feel comfortable waiting for improvement, or if things seem to be getting worse, do try and get in touch with a dermatologist for an rush appointment.
 
It's not unusual that your neurologist wouldn't know all the side effects for a given med -- usually they check their reference manuals for info like that, rather than having it memorized. But if your doctor's attitude seems arrogant, or her office was unhelpful, or if you're generally not happy or comfortable with your neurologist, you should feel free to find another.

As for the rash -- it does sound like it's an allergic reaction to the medication. The vast majority of allergies to anti-seizure medications are not SJS. But since there's no way to know on your own, a dermatologist is actually the best doctor to see (unless of course things are serious enough to require an ER visit). The dermatologist can determine what kind of rash it is, and what the best treatment may be. Often with medications like antihistamines or anti-depressants which can potentially lower seizure threshold, it's a tough call as to whether to use them in treating someone with epilepsy. A good doctor -- whether in the ER, or a GP, or a dermatologist, or a neurologist -- will take the time to discuss the pros and cons, and any alternative treatments that may be available. Unfortunately, good doctors are often hard to find.

When did you start taking the Benadryl? Did the doc give you a sense of how long it might be before the rash starts to dissipate? Since the redness has gone down, it sounds like things may be going in the right direction. If you don't feel comfortable waiting for improvement, or if things seem to be getting worse, do try and get in touch with a dermatologist for an rush appointment.

Thanks for the insight. The ER gave me the Benadryl earlier today. I felt a little better, and the redness went down slightly, but the itching is horrific and still bad (I am doing my best not to scratch). The most upsetting thing is how terrible I feel. I already was lethargic and with the Benadryl feel like a corpse! The doctor at the ER gave me no in-depth info regarding anything. He said to take the Benadryl and to see how it goes then follow up with my GP, a dermatologist or my neurologist. No timeline, nothing.
 
You might try an Oatmeal Aveeno bath to help with the itchiness. (You can get Aveeno at the drugstore). Drowsiness and sedation are pretty common Benadryl side effects, so you may have to deal with the lethargy as long as you are taking the stuff.
 
You might try an Oatmeal Aveeno bath to help with the itchiness. (You can get Aveeno at the drugstore). Drowsiness and sedation are pretty common Benadryl side effects, so you may have to deal with the lethargy as long as you are taking the stuff.

Thanks for the tip, am going to have my mom pick up some of the Aveeno! Yes, I've heard about the lethargy with the Benadryl, which is also somewhat upsetting because what good will it do me insofar as work, etc. Granted, I'm very lucky in that I can work from home, but I guess I just feel bad that nobody seemed to "care". It isn't that I don't understand the seriousness of other issues, etc. I guess I'm just surprised at how lackadaisical they were and downright rude both at the neuro office and ER. I've found a local dermatologist and will be calling them first thing to see if I can get an early appointment to hopefully at least get the ball rolling, then it may be time to find a new neuro or epileptologist.
 
There was an article in my newspaper today talking about the lack of empathy in some doctors. It may be somewhat due to time pressures and insurance restrictions, but it does seem like many doctors can hardly wait for you appointment to end, are hard to get in touch with, don't remember details from your history or get them wrong, and act condescending and dismissive if you questions them.
 
There was an article in my newspaper today talking about the lack of empathy in some doctors. It may be somewhat due to time pressures and insurance restrictions, but it does seem like many doctors can hardly wait for you appointment to end, are hard to get in touch with, don't remember details from your history or get them wrong, and act condescending and dismissive if you questions them.

I guess why I take issue, is that I consider myself a "good" patient. I know my body, and my GP (who is phenomenal) knows that I don't come in unless it is serious. Likewise, with my neurologist. I don't believe in wasting anyone's time, and will be the first to try and ride things out. When I tried the generic Keppra XR and went nuts after two weeks, I called the patient care line and the woman was so rude. I explained my symptoms, and she said "well, what it is you want then?" then I said "well I don't think the generic is working the way the brand did" and her response was "well, it's obvious you should switch back to the brand."
 
It may be just one bad apple like the woman on the patient care line. It might be worth letting your neurologist know how rude she was.
 
It may be just one bad apple like the woman on the patient care line. It might be worth letting your neurologist know how rude she was.

True, and that is generally what I think. Just seems more and more lately that people in the field are ruder. Granted, that is just a nit on my part. I did let my neurologist know about the woman on the patient care line and she apologized because they try to maintain a calm and pleasant demeanor with their patients. I think ultimately, I need to find a doctor that better understands my needs specifically related to the epilepsy. This neuro seems to take every doctor calling her as an affront to her diagnosis. For instance, when I decided to have a hysterectomy last year, my OB/GYN called her and she refused to give her approval saying that my seizures were not hormone related. Neither I nor my doctor said they were, we just noticed a very distinct pattern where I would get very stressed and suffer physically during my cycles (turns out I had extremely severe scar tissue inside the wall of my uterus!) But the doctor thought he was saying my seizures were hormone related. It wasn't until I went to see her and explain "no, we know it's not the reason for my seizures...but if it helps with dealing with the epilepsy, why not go ahead and get the surgery?" She finally agreed. I have grey matter heterotopia, so I already know the "cause" of my epilepsy, but there are factors (stress, sleep, etc.) that can make the issues worse, which is what I try and mitigate.
 
ive been on Keppra XR since November 2010. For me, Ive not experienced any rash with this medication, but that doesnt mean anyone else can. I hope you start to feel better soon and it clears up!
 
ive been on Keppra XR since November 2010. For me, Ive not experienced any rash with this medication, but that doesnt mean anyone else can. I hope you start to feel better soon and it clears up!

Thanks, Kristin! You actually offered helpful advice when I switched to the generic, so I appreciate your input. I, too, started on the XR in November of 2010 and haven't had any issues, so this is a first for me.

Let me ask you something if you don't mind. I saw your other thread regarding feeling sad, etc. I have grey matter heterotopia, and will confess that I only focus on the grand mal seizures. But, I oftentimes find myself staring into space, have intense emotional reactions, etc. I, too, get intense feelings of sadness for no reason. I thought it may be related to the Zoloft (possibly too low a dose) but am I reading your post correctly that in some cases there may be seizure activity behind it?

The reason I ask, and probably why I should now research a new neurologist or epileptologist, is that my neurologist only talks about seizure activity in terms of "large scale". She seems to shrug off minor tics and/or lesser things. So, maybe I'm not getting a complete view of my epilepsy, if that makes sense?
 
Ive found that right before a seizure, I get a feeling of fear and sadness that results in a seizure coming on. Sometimes If I focus on something and try really hard, I can try to make the seizure go away, or at times it wont be as long. But I did run this by my drs nurse, and she said its part of an aura. Its the beginning stages of a seizure wanting to come on. She recommend I write down in a journal anytime I get this feeling, or any other feeling that I feel is not normal. I havnt been on zoloft before, so I cant give you my experience on that. But if you feel your neurologist is shrugging you off on these signs, then id say look around and see what other neuro drs are available.
 
Ive found that right before a seizure, I get a feeling of fear and sadness that results in a seizure coming on. Sometimes If I focus on something and try really hard, I can try to make the seizure go away, or at times it wont be as long. But I did run this by my drs nurse, and she said its part of an aura. Its the beginning stages of a seizure wanting to come on. She recommend I write down in a journal anytime I get this feeling, or any other feeling that I feel is not normal. I havnt been on zoloft before, so I cant give you my experience on that. But if you feel your neurologist is shrugging you off on these signs, then id say look around and see what other neuro drs are available.

Thanks, Kristin. I like my neurologist, but realize now that she really isn't focus on my situation. For her, if I don't have "major" activity then all is good. So, I do think it's time to move on and find a more compassionate doctor. I found a local one with lots of great reviews, more specifically that he listens to all symptoms and tweaks until he gets treatment right. So, I definitely think it is time to move on especially hearing more about others experiences which she doesn't even ask me about (auras, etc.)
 
:ponder:FYI; I have been on generic Keppra 3000mg
a day for 2 years now and the reactions i get are nearly the same
the rash iches so much that i believe iam rubbing away my own
tattoe lol.I have lesions of white scabs on the lower back area , on
my arms and legs it just gross. my deppression is soo bad that I take
2 kinds of Antideppresants.that really arent helping.Iam seeing my Gp
on Wed. I feel your pain...good luck on your efforts:e:
 
rich956 I was actually going to PM you about the rash things for Keppra. Because the last couple of months I keep itching more and more. Now I am breaking out in full rashes on a daily basis. I'm really confused with this. And Koda oddly enough several hours after taking Keppra XR.the itching gets almost unbearable. I assumed it was allergies but I have no idea. I think they way you were treated by your neuro was pretty unfair and you really might want to seek someone who has a better grasp on epilepsy.
 
:ponder:FYI; I have been on generic Keppra 3000mg
a day for 2 years now and the reactions i get are nearly the same
the rash iches so much that i believe iam rubbing away my own
tattoe lol.I have lesions of white scabs on the lower back area , on
my arms and legs it just gross. my deppression is soo bad that I take
2 kinds of Antideppresants.that really arent helping.Iam seeing my Gp
on Wed. I feel your pain...good luck on your efforts:e:

I'm thinking that I may make an appointment to see my GP. While he may not be as versed in my condition, he is an excellent doctor and a really great man. He is the type to listen and really figure things out. So, at least he may be able to offer help regarding the rash. The Benadryl is helping, but I still itch and it's all I can do to like you, not rub off my own tattoo!
I hope that your appointment goes well. Keep us posted if you can!
 
rich956 I was actually going to PM you about the rash things for Keppra. Because the last couple of months I keep itching more and more. Now I am breaking out in full rashes on a daily basis. I'm really confused with this. And Koda oddly enough several hours after taking Keppra XR.the itching gets almost unbearable. I assumed it was allergies but I have no idea. I think they way you were treated by your neuro was pretty unfair and you really might want to seek someone who has a better grasp on epilepsy.

Have you seen a doctor yet? I find it interesting now that there are three of us (and I've seen others lately) who are reporting this same thing. How long have you been on Keppra if you don't mind my asking?
The Benadryl is working somewhat in that the rash has subsided, but the itching is still unbearable. I take the Benadryl then get nauseous and pass out tired, and the ER didn't tell me how long to take it for.
Not that I am a conspiracy theorist, but when I did an initial search regarding the rash to see if I could figure it out...I did see that in January of this year the FDA has pushed re-labeling of several drugs (including Keppra both regular and XR) to have a more severe warning regarding skin issues that the drug could cause. Plus, Keppra was investigated by them for skin issues which is what ultimately led to the relabeling. So, I can't help but wonder if this is something they are only seeing more often now?
I haven't taken the Benadryl yet this morning (need to be somewhat lucid to write a few work emails) and the itching is driving me nuts!
 
When I started keppra a rash started on my neck, along my jawline and speckled on my cheeks. We slowly lowered/toyed with the dose to where it is now. This decreased the severity of the side effects. I still have a lil bit of the rash but it doesn't bother me too much.

I like my current neuro but sometimes he says something stupid, like he's forgotten my medical history, which is understandable, I guess. :P

Buttttt, my epileptologist was the best. (I moved, so I can't see her and a new one would be a 3-8 hr drive from here). She was amazing, she remembered me, all my details, she or her nurse always contacted me immediately when I needed her. She was at a major epilepsy center in the U.S. and because of my experience there I always suggest getting an epileptologist, it's their specialty and good for an epileptic!!!!!

my :twocents:
 
When I started keppra a rash started on my neck, along my jawline and speckled on my cheeks. We slowly lowered/toyed with the dose to where it is now. This decreased the severity of the side effects. I still have a lil bit of the rash but it doesn't bother me too much.

I like my current neuro but sometimes he says something stupid, like he's forgotten my medical history, which is understandable, I guess. :P

Buttttt, my epileptologist was the best. (I moved, so I can't see her and a new one would be a 3-8 hr drive from here). She was amazing, she remembered me, all my details, she or her nurse always contacted me immediately when I needed her. She was at a major epilepsy center in the U.S. and because of my experience there I always suggest getting an epileptologist, it's their specialty and good for an epileptic!!!!!

my :twocents:

Thanks for your insight. Interestingly enough, there is a level 4 epilepsy center about an hours drive from me. I am thinking of calling them, because I would rather drive an hour to see specialist then deal with the dog and pony show I am dealing with now. I'm not a complainer and don't feel entitled, but I'm shocked that even when I do my best to be a "good patient" to have been treated so badly both by the neurologist and the ER. So I definitely think it is time to seek out a better practice.
I did search for an epileptologist, and ironically there are not that many in my area nearby. Most are neurologists with some specializing in epilepsy. Trouble is, I'm in the Washington DC area and yesterday when I called dermatologists, neurologists, etc. every single place couldn't see me for at least a month! Even though I explained that it was somewhat urgent, nobody would see me.
When I had my first seizure, my mom called 911. At the ER they pumped me full of Dilatin and sent me home with a prescription for it. I called the neuro they recommended and they wouldn't see me for six months. I finally went to my GP and saw his associate. She is the one who ordered an immediate MRI and referred me to my current neuro who saw me right away. So, I am thinking that maybe I need to schedule an appointment with my GP, because if he deems it more serious, maybe I can get a more immediate appointment with a specialist?
 
It has been my experience that having another dr give a referral or having them call for you gets you in quicker. Also, make the appt even if it is scheduled out in the far future. Then ask them to put you on their list for patients to call if someone cancels. You could then call them each week or so and ask if anyone cancels. Their staff will remember you for sure.

Side note - I managed medical offices for several years a couple of decades ago :p soooo what I do is this...I am super nice to the office staff and get on a first name basis with them, ie "Morn, name or ms. name, this is Eli...blah, blah, blah." Having a good relationship with the staff gets things done quicker!

I think Nakamova has posted in the past re: going about finding a good epi center.

Best wishes!
 
Back
Top Bottom