Lamictal Rash or Stephens Johnsons

I have a confirmed drug allergy to lamictal. I take it as an anti-convulsant. I went to urgent care and spoke with the on-call neurologist and both said to stop the lamictal and take benadryl. (I am simultaneously taking keppra, and we were trying to taper me off that and onto lamictal). They advised me if the rash starts to peel, go to the ER. It is beginning to itch and was accompanied with a low grade fever. I am trying to google the images of Stephens-Johnson's, which is potentially fatal. I am looking obsessively at the rash to make sure it is not peeling, but, now that the thought has been planted, I am really scared.

I eat a vegan diet, have removed microwaving anything from my lifestyle, and was planning to go completely raw next year. I am trying to take baby steps into the raw lifestyle because of the heavy medication I am taking for epilepsy.

If anyone has any idea of what I should do, please advise.



  • my dad has steven johnsons for sulfa drugs, so when my daughter developed a bad rash, i took her to the doc. she didn't have s-j, but the doc told me that s-j causes really horrible pain and said i'd (you'd) KNOW.

    when in doubt, it's good to go to a doc to get reassured.

    good luck!

  • Thanks for the reply. Did your dad overcome the s-j easily? I haven't noticeably peeled overnight but I am super itchy, and am going in for a follow-up visit at urgent care today, and hopefully to my neurologist on Tuesday to find a more suitable medication. They all come with such harsh side effects.

    I played back the entire last week after reading the symptoms of s-j online and in forums. It starts with a flat red rash, accompanied by fever, sometimes has a cough, body aches, has flu-like symptoms, overall fatigue, etc. Yesterday I woke up covered in a ginormous rash, head to toe. My neurologist did give me the heads up about a measles like rash, so I knew to call there.

    The preceding week, I had been going to bed once I got off work, because I was so tired. The last three days, I just couldn't eat at all, because I kept getting sick. My back started hurting at the same time. I had a dry hacking cough. I woke up Saturday at two in the morning extremely hot, but eventually got back to bed. I woke up at 7, went about my business, and two hours after, I looked down at my body and was shocked at what I saw. When I was at urgent care, they told me I had a low grade fever.

    So, I feel like I have shown all the early symptoms of s-j. Incidentally, my mom and my sister are allergic to sulfa drugs, but lamictal is not a sulfa-drug. I read that it actually interferes with sulfa-drugs.

    I have been unlucky with seizure meds, and for two of the four, I have fallen in the side effects that the lower percentage fall in. The first I got to a toxic level, Two medicines ago, I was vomiting constantly, and the doctor said I fell in the 5% of people who get sick on it. And now with lamictal, I am in the suggested 10% of those who get an over the body rash. Of those 10%, point 3% of the adults with it go to the hospital. Those hospitalized have a 40% chance of fatality.

    I am a huge hypochondriac, especially when putting my life into the hands of another person and western medicines which are usually worse than what its treating. I never want a fatal seizure, but the most common way to die is drowning. You can die by electrocution if having multiple seizures a day.

    Which is why tinkering with so many medicines is dangerous, because some result in an increase in frequency, or a worsening of the volatility of the seizures.

    My last seizure was over a year and a half ago, but was the scariest because I could not wake up. My boyfriend tried helping me come to, but he couldn't, I was just listless, so he had to call the paramedics, and I didn't come to until I was in their truck and on oxygen.

    I have never been as scared as that most recent seizure, because I was only 29 then. I am letting epilepsy be the end of me.

    Thank you so much for responding. I can't say I am in the clear yet, but I stayed at my mom's last night, and the general concensus is that the rash is fading and hasn't developed into S-J, but I am going for the doctor's confirmation today.

    Fingers Crossed.....

Sign In or Register to comment.