Epilepsy Talk

Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal | March 10, 2017

This article is not for those with a weak stomach.  Because Stevens-Johnson Syndrome is an ugly and sometimes deadly disease.

But if you are on Dilantin or Lamictal, I urge you to read this information.

According to the Mayo Clinic: Stevens-Johnson Syndrome is a rare, serious condition, thought to be caused by a disorder of your immune system.

Often, signs of Stevens-Johnson Syndrome begin with flu-like symptoms, followed by a painful red or purplish rash that spreads or blisters, eventually causing the top layer of your skin to die and shed.

Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications.

If you have Stevens-Johnson Syndrome, several days before the rash develops, you may experience: fever…sore throat…cough…and burning eyes.

Stevens-Johnson Syndrome requires immediate medical attention.

Seek emergency medical care if you experience any of the following signs or symptoms: unexplained widespread skin pain…facial swelling…blisters on your skin and mucous membranes…hives…tongue swelling…a red or purple skin rash that spreads…or shedding of your skin.

The exact cause of Stevens-Johnson Syndrome can’t always be identified.

Usually, the condition is an allergic reaction in response to medication, infection or illness.

Anticonvulsants like Dilantin and Lamictal can be the culprits which means that complete withdrawal is necessary.

Possible complications of Stevens-Johnson Syndrome include: a secondary skin infection, which can potentially become a life-threatening condition such as sepsis…eye problems…damage to internal organs…and permanent skin damage.

Because it’s difficult to determine exactly which drug may be causing the problem, your doctor may recommend that you stop taking all nonessential medications.

And there are no standard recommendations for treating Stevens-Johnson Syndrome.

When a large area of your body is affected, skin grafting — removing skin from one area of your body and attaching it to another — may be necessary to help you heal. But, this treatment is only rarely required.

If the underlying cause of Stevens-Johnson Syndrome can be eliminated and the skin reaction stopped, your skin may begin to grow again within several days. In severe cases, full recovery may take several months.

It’s difficult to prevent an initial attack of Stevens-Johnson Syndrome because the trigger is unknown.

However, if you’ve had Stevens-Johnson Syndrome once, and your doctor determined that it was caused by medication, be sure to avoid that medication and others in the same class to prevent another attack.


To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow”


  1. I don,t have to worry about.


    Comment by Michele Metzger — March 10, 2017 @ 1:38 PM

  2. HI,
    While on he first few days of the starter pack of Lamictal all the skin in my mouth peeled off. It was so very painful. It began with a sore throats ended up with thrush on top of it. What a mess. Luckily I called my on call Neurogist who told me to stop taking that med. it was completely miserable.
    This article reminded me that my Neurologist told me I’m at risk because I’ve experienced it once. I need to re-educate myself on what to avoid.
    Thanks for the article.



    Comment by Marie — March 10, 2017 @ 1:40 PM

    • Marie, I’m so sorry for what you went through. But I’m glad you’re staying diligent about preventing a future breakout.


      Comment by Phylis Feiner Johnson — March 10, 2017 @ 1:44 PM

  3. Stevens and Johnson must have been a barrel of laughs. I take lamictal with Keppra and the combination rocks for me. Not long after starting lamictal I got a rash. Was rushed to a dermatologist. Samples were taken and results not known for 3 day. I had to stay within a mile of a burn unit. Happily it was psoriasis and was sorted out very easily. But it was in the middle of a snow storm that shut down all the roads. Now that was creepy. I watch for any symptoms and thanks for the reminder.


    Comment by Kate Jacques — March 10, 2017 @ 1:54 PM

    • Creepy is right. Saying to stay within a mile of the burn unit would freak me out. (Not to forget the added excitement of a snow storm.)

      Glad it all turned out ok.


      Comment by Phylis Feiner Johnson — March 10, 2017 @ 4:28 PM

  4. I think I did have it when on Lamictal 500mg a day for 16 years. A thicker red tongue , often my skin was like a rash – red dots in clusters everywhere and sore. Nothing done about it. Could this have done something long term? Now I don’t have it, but could it have affected me? I had to come off it due to the doctor saying there was serious risk of long term damage to internal organs.


    Comment by Robert Poloha — March 10, 2017 @ 2:15 PM

    • I think you’re all right Robert. If it HAD been Stevens-Johnson Syndrome, the rash would have turned into something a lot more sinister.

      But good that you’re concerned and careful.


      Comment by Phylis Feiner Johnson — March 10, 2017 @ 4:31 PM

  5. This is very Rare. Don’t be afraid of Dilantin (Phizer name brand only not generic). I’ve been on it for 16 years with no problems. it’s the only AED that works for me. Lamictal made me feel like my head was in a vise.


    Comment by Alan R. — March 10, 2017 @ 3:43 PM

  6. How scary! I am on Lamictal and have not had any problems, thank goodness. For those who suffer, I can only imagine how difficult it is.


    Comment by Soo Ihm — March 10, 2017 @ 5:54 PM

  7. if you’ve been on Lamictal or Dilantin in the past but are no longer taking it? are you still at risk of developing this?


    Comment by Marissa Rivera — March 10, 2017 @ 7:26 PM

    • Fortunately not, Marissa. It only shows up as a side-effect at the very beginning. That’s why they go so slowly when titrating up the dose.


      Comment by Phylis Feiner Johnson — March 10, 2017 @ 8:01 PM

  8. Been on Dilantin name brand for 53 1/2 years and no side effects ! 😊


    Comment by Bonnie — March 11, 2017 @ 7:33 PM

    • YAY Bonnie!

      I’ve been on Lamictal (generic) for 10+ years with no problems.

      But, you have to remember, SJS is very rare.


      Comment by Phylis Feiner Johnson — March 12, 2017 @ 9:33 AM

  9. Hi, I am 41 and when I was 17 I was on Dilatin for a couple of years and I don’t remember having issues with my skin. My Dr. Kept on changing meds till when I was 22 I was put on Depakote till when I was 39. That’s when my Dr and I made the decision of change med to Lamical, and I was on combination with Zonomazide and Clonazepan for about 6 months (Zonamizade only 4 days because it gave me a terrible reaction, almost got intoxicated) so Dr switched me back to Depakote (low dose) in combination with Keppra and Clonazepan which I have been for the last year. My question here is, since I started with the Lamical combined with zonamizide, I had a terrible irritation in my skin, burning sensation, small rashes that comes n goes, and I get very easy purple bruises. My skin is totally different than before, I used to love the sun, now it feels like burning and my head too. Every time I explain this to my neurologist he tells me I am no longer on those meds and that isn’t what it is, so he send me twice with the dermatologist and they can’t say much, just game me a cream to use and doesn’t even help. So, I am no longer on that medication, but all the bad side effects I had at that time I took it, never went away! I am scare, I am sorry for the long story, hopefully I get some answers, thanks!


    Comment by Lupe — March 11, 2017 @ 11:41 PM

    • It started immediately after the Lamictal?

      Well, it’s not Steven’s-Johnson Syndrome because you wouldn’t have made it this far.

      But it could be some autoimmune condition and I think I would visit a rheumatologist to see if they can help diagnose the disorder.

      I know you must be terribly uncomfortable and I’m sorry for that.


      Comment by Phylis Feiner Johnson — March 12, 2017 @ 9:41 AM

  10. Lamictal has in it MICROCRYSTALINE CELLULOSE, That and other celluloses can weaken the thyroid, & if the thyroid is weak, so goes your immune system. I have used in the past few weeks IODINE sparingly. To know if you need IODINE, if you have any of it, rub a spot on either side below the rib area at bed time. If you see no orange color or signs of IODINE, when you wake up in the morning, you have your answer. I think it helps the brain too, when you have a STRONGER thyroid & immune system, it has to benefit the brain in some way, as it’s not stressed as much, and maybe more defensive in other brain areas. Check with a good herbalist about how you should use IODINE. Neurologists should know if IODINE helps the brain, because it is NOT in any of our foods like red meats & etc,, because of all the radiation added to all red meats & some other foods where IODINE use to be in foods.


    Comment by C D — August 14, 2017 @ 6:55 PM

  11. I had Lamictal (generic form) added to my Zonisamide within the last month or so. I had read about these possible side effects and was concerned when the doctor mentioned putting me on it. After much discussion back and forth, we decided to start me on a very small dose and to titrate up every couple/few weeks until I reach the final dose. I am to let him know at any time if something doesn’t feel right. So far, so good. Only thing that has been an issue was at the first titration up….when I got extremely sleepy but no skin problems and sleepy I pretty much expected. Not yet at final dose but I have hopes that this will be the combination that works for me. I did have a seizure the other night (based on the condition of the inside of my mouth and tongue) but apparently it was mild enough not to wake my husband or the dog (who will normally wake my husband) and I didn’t feel all that bad the next day. Maybe this is a sign of things improving from the bad tonic clonic I was having before?


    Comment by Ellen LaFrancis — October 14, 2017 @ 10:32 AM

  12. I was on Dilantin for approx 30 yrs. It did help control the seizures not 100 % but better then the other meds I was tryed on.
    When I was finally taken off the Dilantin permanently my bones were permanently ruined (very weak) and my gums dropped covering approx 9/10 this of my teeth. I played Dr with my gums. I used a blade to cut the gums. I know it sounds so stupid but I was very lucky for my teeth finally show instead of mostly gums. The meds I was tryed on were only making me have more seizures approx 10xs at least a day. After approx12 more years they got so much worse that I was finally sent to an Epileptolagest who not only changed my meds where I was only having seizures once every2-3 months. The he gave me a surgery that has me free of seizures now. I’ve been free over61/2 yrs


    Comment by Marlene C. Linville — October 14, 2017 @ 6:23 PM

  13. My question is WHAT happens to the inside internal body, that you do not see happening like you see the rashes, & feel the pain from SJS on the visible outside ? All of us need to protest to the CDC & FDA with millions of emails & phone calls NOW to the FDA & CDC, as NIH & other clinical trial study clinics & doctors offices USE US to give us any amounts of these drugs. One of the doctors at the NIH told me 18 years ago that there is BACTERIA & FUNGUS in the bed I was sleeping at home, while taking 200+ mgs of lamictal there at NIH. I then asked,,, WHY is this the 1st time ever I got a rash like this ? That doctor did not have an answer. Dr. Maria Tozcek is that doctors name, as I am sure that was only 1 of many reasons a drug has no side affects like LAMICTAL with SJS. Remember,,, Your bed & home is unsafe, never a drug. Too much Lamictal is never a problem. Right. & doctors keeps on saturating our brain with it.


    Comment by C D — May 28, 2018 @ 1:43 PM

  14. What are long term side effects of SJS? I had that rash for years on and off when on Lamictal – and often it would come on me for weeks at a time. I was itching and trying to stop scratching myself. Once I stopped the Lamictal, then it stopped. But can it have any long term effects which you can keep after stopping Lamictal?


    Comment by Robert Poloha — May 28, 2018 @ 4:35 PM

    • The chances are pretty rare.

      However, if you’ve had Stevens-Johnson Syndrome once, and your doctor determined that it was caused by medication, be sure to avoid that medication and others in the same class to prevent another attack.


      Comment by Phylis Feiner Johnson — May 28, 2018 @ 5:29 PM

  15. I was once tried on Trileptol, and had a reaction very similar to this. I started to icth like crazy, and my skin started to get dry, and peel off. I called up the neuro, who I was seeing then. I told his nurse practitioner about what was happening, and she immediately said “David, I want you to stop taking the Trileptol, IMMEDIATELY. You are having an allergic reaction to it.” Once I stopped the medicine, the trouble stopped.


    Comment by David Jensen — June 27, 2018 @ 1:44 PM

  16. I had it for years – with 15 years of Lamotrogine – but it would come and go! One year for a couple of months, then it would stop! Then I had to wait till it would come again – never knowing when! I was itching and scratching to start! But once I learnt to avoid scratching and “suffer” for a while, that seemed to be the quickest way to get rid of it for me! The longer I scratched, the more I suffered and made it worse, lasting for 2-3 weeks!! When I stopped scratching – the first few days it was horrendous, lasting for about 2-3 days. But then it got better much quicker, recovering within 4-5 days from beginning to end. That was the best way to get rid of it – leave it alone and it would go away!


    Comment by Robert Poloha — June 27, 2018 @ 5:14 PM

    • Ugh, you poor soul.

      Thanks for the advice, although I’m sure no one wants to be in the position to need it!


      Comment by Phylis Feiner Johnson — June 27, 2018 @ 5:24 PM

  17. I have been on Lactimol for 2 years now, (Epilem first drug at 29 dose I could not breathe and resulted in Emergency) With Lactimol 750mg x 2. No problem aware of? I had bus fall accident to right side including head resulted in unable to use stairs. Moved into Disabled flat after which then had just one Period. Not waking for night seizure-of biting toungue thru, during not waking for day. Tests undiagnosed? after scan so decide Noctunal seizure, by consultant as Epelepsey Seisure just the one and none since. Still on Lactimol although should been increased to 1500×2 Kept at original dose. Still no known problems Separate from drugs associated with heart and Astma steroids. Age at time 72 now 74 years old. Cognitive skills all at 100%. See Consultant again in January 2019 after previous in Jan 2018. Never smoked and also l.time t.total. Not overweight although lower stomach has reached 43 in as opposed to chest of 40 in. Posted from. United Kingdom 24/09/


    Comment by John Thompson — September 23, 2018 @ 3:02 PM

    • John, do you have Nocturnal Seizures now?

      According to an article in Journal of Neurology, Neurosurgery & Psychiatry, if more than 90 percent of your seizures occur while sleeping, you are said to have sleep seizures.

      The article also notes that an estimated 7.5 percent to 45 percent of people who have epilepsy have some form of sleep seizures.

      Since seizures occur in sleep during the night, it’s often hard to diagnose them, except for unusual movements at night, confusion upon awakening, bed wetting or falling out of bed.

      However, these symptoms are also a kind of parasomnia — an umbrella term for a group of sleep disorders that include night terrors, sleepwalking, teeth grinding, and restless leg syndrome.

      It’s believed that sleep seizures are triggered by changes in the electrical activity in your brain during the stages of sleeping and awakening.

      Most nocturnal seizures occur in stage 1 and stage 2, which are the stages of lighter sleep.


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 4:47 PM

  18. Apologise about drug mine is LEVETIRACETAM. Not sure if part of Generic Group?


    Comment by John Thompson — September 23, 2018 @ 3:28 PM

    • Yes, it’s the generic for Keppra.

      And as you know, it’s an antiseizure drug.

      Its mechanism of action is unknown, but it inhibits the spread of seizure activity in the brain.

      In studies, addition of levetiracetam to other antiseizure drugs reduced the frequency of seizures more than placebo.


      Comment by Phylis Feiner Johnson — September 23, 2018 @ 4:52 PM

  19. How rare is sjs?


    Comment by Mary Kirk — September 25, 2018 @ 6:08 PM

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,904 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: