Epilepsy Talk

Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal | October 17, 2009

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.


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  1. I urge everyone with Steven- Johnson Syndrome to tell others about what happened. It actually happened to me. When I was 6 years old, I was diagnosed with epilepsy. I was put on Dilantin. I started out with a rash. I got worse. The rash then broke open and I started losing my skin. My mother took me right away to Children’s Hospital at San Francisco, CA. This was in 1949. They had no treatment for it. They put cold compresses on me to treat me. They thought I was going to die. Somehow, I survived it.

    It can go into remmission and come back later in life. Two years ago, I was diagnosed with it again. This time my neurologist told me that it was Tegretol XR. He died in a car accident 2 months later, before he could do anything. I am 66 years old now. I have bumps underneath my skin and I have white patches of skin that are incresing. I can see my tendons underneath my skin.

    My present neurologist has referred me to a dermatologist. I do not get to see him until January of 2010. He will confirm by a tissue biopsy whether is is Steven-Johnson’s Syndrome or something else. I hope to get a cancellation appointment and be seen sooner. I will keep you posted. Ruth

    They have better ways of treating it now.


    Comment by Ruth Brown — October 17, 2009 @ 4:42 PM

  2. Phylis, thank you very much for your added research. It will help me very much.


    Comment by Ruth Brown — October 19, 2009 @ 1:44 AM

  3. Hello
    I just discovered this site . “maybe” lol ,memory problems, imagine that.
    I respond here because I am starting to pay attention to some of these “side” affects .
    I quit paying attention a few yrs back mostly because of self diagnoses and just knowing to much , just the mass confusion it was causeing in my head.
    I guess I have had something like this ?
    I will say the reaction that my neuro. had was the strongest he EVER had even giving me his personal number to call in case of more reactions .
    I think I was taking lamictal at the time
    I have taken 12 different meds and had serious side effects to all of them though.
    The reaction I had at the time was a blistering effect on my tongue and lips ,every orifice that fluid came from my body had a mass amount of small white blisters , eyes,lips,tongue mouth ,privates, I think maybe ears, very bad, burning But I did not seek medical help until it was in decline maybe on the 2nd week?
    My skin burned I did not sleep I guess was having nocturnal szs. but I was alone and very depressed and did not even realize how ill I may be? I know for sure this drug(lamictal) was the cause of a very high fever though .
    I also did not know at the time about removing me from meds and szs. lol duh . I was removed from this in the v.a. in the morning and just cut loose ,alone , on a new drug and immediately started having long hard gmal szs for over a week
    The memory of that rash,blisters is one of the strongest I have left . Please be careful. Rick


    Comment by rick — October 28, 2009 @ 2:52 PM

  4. Well Rick, just generally speaking, I was told when I went on Lamictal (the generic) that if I developed any kind of rash, spots or swelling, I should call my doc right away. At the time, I didn’t know about Steven’-Johnson Syndrome, but he did tell me that this rash could indead lead to death. Fortunately I had no reaction. Did you get any kind of warning from your doc?


    Comment by Phylis Feiner Johnson — October 28, 2009 @ 6:59 PM

  5. Rick, I am very sorry for your really bad reaction. That was my reaction to Dilantin when I was 6 years old. I do not know if becomes slower and less loss of skin when I get older. When it goes into remission. I am 66 years old now.

    I am on Lamictal. My neurologist does not want to take me off of it, because I have a tendency to have Status Epilepticus. That is deadly, as well. I wish I could see a dermatologist that is a specialist sooner than January, 2010. I will have to wait and see.

    The only warning I got, was never to take Dilantin again. I was not told about Lamictal, at all. I am glad that you had no reaction to the generic. That is what I am on.


    Comment by Ruth Brown — October 30, 2009 @ 4:33 AM

  6. Hi Rick,
    I just noticed that you said, I did not know about being taken off of meds, duh. Do not put yourself down. How could you know?

    I fogot to mention that when I was 6 years old, I was only having abscene (petit mal) seizures. Now, I have every type of seizure you can imagine. That it makes it more difficult for my neurologist to know what to do. Either way I can die. Ruth


    Comment by Ruth Brown — October 30, 2009 @ 4:57 AM

  7. Hi
    Thanks . I saw this after you wrote it but had to wait .
    First the reason I would give myself that “duh”is actually I did know all that type of imfo. but was just so out of tune during that time I am rather surprised I actually took the meds to start with
    My quick history reads pretty simple
    I,m 46 ,have had gmal szs. for 15yrs. But I now feel I have had auras all my life ?maybe going back to when I was hit by a car at age 6?
    Probably partials also ? My “head rushes” are a lot longer than “normal” peoples. lol.
    I also feel accurate in saying I have every type of these except a “drop” sz.
    I have never let the gmal szs bother me NEVER more an annoyance than anything .
    I am different now though because I am on s.s.d.i. for this and was approved in less than 90 days ? wow I guess I was sick ? that is still sinking in?
    Not watching out for myself with a sz disorder led up to this . P.T.S.D. “life” was stacked up big time and I truly did not see it coming ?
    On topic . I also took dilantin off and on for years but honestly did not pay a lot of attention and I now know it never worked .
    I actually went back and looked and yes lamictal is the med I was taking when that blistering happened .
    was it this syndrome ?I can not say . But I crashed hard after that from the with drawl from the meds and have really never been watched as close as I could have been .
    I took tegretol also and loved it at least from a mind set. But it gave me partial szs and auras constantly over a 2 week period and that is when I realized how “mellow” the drug had made me. OOPs that was it
    I usually make mention that I also have 15 years sobriety and never like “downers” when I was using drugs ,so it was an easy call.
    Apparently whatever side effects I did have were bad , the reaction my Neuro. and his nurse had at the V.A. were the most positive they EVER had lol. he even gave me his personal ph. no. wow
    I have taken 12 meds I guess and now I am on a drug study taking lacosimide.
    I still have szs. though . mostly nocturnal gmals that last around 30 min. sometimes 1 but now have had 2 or 3 in row about 10 times.
    I feel lucky compared to some though.
    I have never bitten my tongue ? wow
    Well enough of my rambling . please be care full Rick


    Comment by Rick — October 30, 2009 @ 9:15 AM

  8. Hi Rick, the people who make the medicines do not want us to know. I think there are other medicines besides Dilantin and Lamictal that cause Stevens-Johnson Syndrome.

    I know about 2 people who were on other medicines that they were told,”If you develop a rash, quit taking it and call me.” I found out that Texgretol XR is another one. The stronger they make the medicines, the more likely the rash.

    I am 66 years old, I have had epilepsy since I was 6 years old. It is hereditary in my family. My father and sister had it. It goes way back in the centuries, on my father’s side.

    I have a poem that makes it easier to explain my history.
    Six years old, 1949m
    Absence seizures
    Dilantin is deadly.
    Steven’s-Johnson Syndrome
    I am still here!

    Twenty-years old, 1963
    First grand mals
    Three in a row.
    I am still here!!

    Thirty-six years old, 1979
    I went into a coma
    I am still here!!

    Confusion, getting lost,
    Repeating myself, tremors
    I do not know or remember
    When I do these things.
    I am still here!!

    Fifty-five years old, 1996
    Diabetes was the cause, the seizures stopped
    I am Still here!

    Sixty-four years old, 2007
    Lots of different kinds of seizures,
    Pneumonia, I had
    Also diagonsed with Steven’s Johnson Syndrome
    Told it was Tegretol XR.
    I am also on Lamictal
    I am still here!!

    2009, white patches on my skin,
    bumps I feel under my skin
    rash and fever I get.
    Dermatologist I see for a final diagnose in Jan.2010 He can do a biopy and skin grafts
    Might be Stevens-Johnson, might be skin cancer. Either way, I am losing my skin.
    I have been on so many medicines, Rick, in the last 60 years that I have lost count. Ruth


    Comment by Ruth Brown — October 30, 2009 @ 10:36 PM

  9. y 24 year old son began having grand mal seizures about nine years ago. Until 5 and a half years ago they were very far apart, and his doctor’s recommended not to medicate him, explaining that the seizures may disappear completely as he ages as mysteriously as they began. Then something horrible happened. He was charged with a crime he did not commit (which although his attorney compiled evidence clearing him, he was frightened into taking a plea bargain for 10 years in prison the night before he was to enter the not guilty plea). The problem with his epilepsy was that on the actual night of his arrest, the officers interrogating him (who did not like his answers because they did not fit their theory of the crime) forced him to stand up for 12 hours straight without food or water in hopes of ‘cracking’ him. The result of this was that he fell into a grand mail seizure in which he did not breathe for 10 minutes, and received a concussion. Instead of getting medical help, he was tossed in a cell and left to recover on his own. This was to change the severity and frequency of his seizures permanantly. It is also probably related to the prosecutor’s ability to maniputate him into a plea bargain months later which would never have stood if the case had been heard by a judge or jury. My son has already served over half of his sentence, and has been brought back to life dozens of times by prison EMTs. He has been on lethal doses of Tegretol, Dilantin, and now Dilantin and Lamictal (300 mg & 400 mg per day each, respectively). I never know if my phone conversations with him will be my last. My question is this, when the current dosage levels of these drugs quit working, and the will, is there any other medication being tested now that would be worth the risks, and have they found any effective substances for epileptics that do not cause Steven’s-Johnson Syndrome? Right now my son’s seizures come in 3’s, and always deprive him of oxygen and often cause injuries that in themselves are life threatening. Can you give me info on where I can find out about cutting-edge research on S-J syndrome and medications, including human studies being conducted? Is there anything known that might help keep him from getting Steven’s-Johnson?


    Comment by kim cassidy — January 24, 2010 @ 1:54 PM

  10. Hi Kim, no wonder you are frantic. I am sorry to hear you and your son is going through such a rough time. Keep fighting to get him out on parole. A 10 year sentence can be cut back to only a few years on parole.

    I am on 5 medicines each day: Gabapentin or Neurontin-1800 mg, Lamotrigine or Lamictal-600 mg, Keppra-2500 mg, clonazepam-4 mg and Primidone-350 mg.

    These are not lethal doses for me. It is what I need to keep my seizures under control. S-J Syndrome is fairly rare. Unless he has been diagnosed with it, you do not need to worry about it. There are medicines with a lot of rare side effects. Do not worry about them.


    Comment by Ruth Brown — January 25, 2010 @ 3:52 PM

  11. Hi Kim, here are (((HUGS))) Ruth


    Comment by Ruth Brown — January 25, 2010 @ 3:54 PM

  12. I started having grand-mal seizures and taking meds now I have something I think is chills is it hives ? I’m 32 and alone with 3 children youngest 2 my body aches so bad i feel horrible & the drs dont listen ! HELP


    Comment by Eleanor brown — December 9, 2010 @ 7:33 PM

  13. Eleanor, first of all, take a deep breath. Chills are when you feel cold all over. Hives appear as a rash on your skin.

    What kind of meds are you on? How long have you been on them?

    Have you considered switching docs or at least getting a 2nd opinion? I feel strongly that you should. There’s no reason for someone to suffer like you’re doing.

    First of all find a new doc. This is a comprehensive list of the best neurologists, epileptologists, neurosurgeons and pediatric doctors, compiled by eforum members, based upon their own positive personal experiences.


    While you’re waiting for your appointment, busy as you are, try to keep a daily seizure diary. Note down your sleep patterns, what you eat (and when), your daily activities (and any emotional upsets), how you feel before a seizure (triggers? auras?), during a seizure and then after, plus the duration of the seizure.

    This will help your NEW doc get a better idea of what you’re going through.

    If you think you’re having an interaction from your drug mix, visit your pharmacist. They’re a goldmine of experience.

    The pharmacist gets a soldier’s view of patients with similar conditions, using different medications every day. They see who improves and who complains about side effects. Plus, pharmacists can be helpful in discussing the potential adverse effects of medications, their costs, the relative risks and benefits of generic versus brand-name medications and potential interactions.

    Please do all 3 of these things ASAP. And please. Let us know how you are doing.


    Comment by Phylis Feiner Johnson — December 9, 2010 @ 9:03 PM

    • listen to Phylis, she is very smart,,she works hard at keeping up to date info available and
      knows how to do serious research,,, she puts her heart into everything she does
      (she is our secret weapon,shh!she doesn’t know)
      may you be blessed with everything that you will need for yourself and the children
      thank you Lord


      Comment by patricia moran — December 31, 2010 @ 7:58 AM

  14. Pat, I agree!!


    Comment by ruth brown — January 1, 2011 @ 5:30 AM

  15. Phyllis..You and My mother Candi are friends…I think the 2 of you are the most wonderful people in the world for all you do for us Ep patients…They are switching my meds Again! I know my mother will keep you updated..But again Thanx!


    Comment by jeanna — September 8, 2011 @ 7:27 PM

  16. Well Jeanna, thank you for the compliment. But I don’t ever think I could match your mom in that department.

    Meds are such a crap shoot. Just when you think you MAY have it right, boom.

    Believe me, I kissed a lot of frogs, before I found my magical med mix!

    I hope you don’t have to do the same…


    Comment by Phylis Feiner Johnson — September 8, 2011 @ 7:44 PM

  17. I think I have a mild case of SJS. I have been taking Lamictal for 7 years now. My rash spreads from my back to my stomach. I also have painful sores on my tongue. I’ve had these symptoms for at least 4 years now and never did anything about them. I finally decided to research my condition, but haven’t found much information about mild cases of SJS. Does anyone know if you can develp SJS after several years of taking Lamictal?


    Comment by michelle — October 9, 2011 @ 3:00 PM

    • Yes, Lamictal can case Stevens-Johnson Syndrome, but usually the result is immediate.

      That’s why they titrate you slowly. But nonetheless, if you are concerned, I urge you to take pictures (if you can reach the areas) and show them to your neuro.

      He might want to switch you to something else.


      Comment by Johnson — October 9, 2011 @ 5:45 PM

  18. lila,please i want to know if u get a mild casesjd could it get worse a week later i am sooo scared and can people catch it from me


    Comment by lila — December 5, 2011 @ 8:55 PM

  19. I am 38 and 2 years ago I had Steven Johnson Syndrome. The actual cause could not be pin-pointed. (In my case possible Enalapril bp meds or IV contrast dye or cough syrup or any combination of these.) My condition started with a severely sore mouth a few days before the rash and fever broke out…and it took my doctors 4 days in the hospital doing tons of blood tests to figure out what it was once the rash started. I was told by my many doctors that there is over 1000 different meds that can cause Steven Johnson Syndrome. And I was also told that Ibuprofen and Motrin can be major causes of it so I try to avoid these as much as possible. I have also been told over my many appointments with many doctors over the last 2 years (still seeing doctors because I have developed severe eye complications with scarring due to the Steven Johnsons) that it can also be caused from an immune deficiency issue. And also told that once you have had it, you are 15-20% more likely to have it happen again. And I was also told that Steven Johnsons can present itself anywhere from hours up to a week after drug exposure. And it usually progresses quickly and there is no real treatment-all they can do is give you diaretics to flush it out of your system quicker and then treat the symptoms that are already present until they subside and then treat you for the lingering complications afterward (such as my eye condition). And it can be very deadly. If the drug is extremely strong and fully in your system it can shut down your organs and be fatal. I am only sharing this info so that everyone is aware how serious this condition can be. I wish the best to anyone who may be experiencing the effects of this condition. Speaking from personal experience, this is one of the worst things that has ever happened to me in my life…the effects are so devestating and life-changing.


    Comment by Michele — December 19, 2011 @ 11:15 PM

    • Oh Michele,

      What you went through is ghastly. (And it sounds pretty grim, even at this point.)

      When my doctor was in med school, one of his co-students developed Stevens-Johnson and she died.

      He said it was the most depressing event in his life at that time. All those doctors and no one could save her life.

      Thank you for writing…thanks for your wise words…and the education.


      Comment by Phylis Feiner Johnson — December 19, 2011 @ 11:54 PM

  20. HI, I am a survivor of SJS. I had it when I was 19 and I am now 43. I am having tons of unexplained health issues and had a doctor tell me it couldn’t have anything to do with the SJS. (Fibromyalgia, skin rashes, fatigue etc.) I have been researching it off and on for about 4 years now, mostly online, and feel it definately could be. I cannot find any writings on survivors later in life. If you know of any please let me know. Thank You and good luck to you all. Andi


    Comment by Andi — March 5, 2012 @ 8:22 PM

  21. Andi, I don’t have specific experience with SJS but I can give you names for 2nd opinions and advice + the SJS website.

    2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors


    This is a compilation by website forum members who have had positive personal experiences with their docs over the years.

    Best Neurology & Neurosurgery Hospitals


    This is a link to the U.S. News and World Report’s current list for best Neurology & Neurosurgery hospitals. More than 1,200 hospitals are included. The top 50 are ranked and the rest are listed alphabetically.

    SJS Fact Sheet


    SJS Patient Resources (Bottom of page)


    I know this doesn’t answer your question. But perhaps you can find some help.


    Comment by Phylis Feiner Johnson — March 5, 2012 @ 9:11 PM

  22. Hi Phylis, Thank you for your wealth of information. My question is: I notice that most people are on a combimation of meds. I was diagnosed in late 2011 Grand Mal/Generalized, put on Lamictal ONLY. I have had 4 bad seizures, that we know of since. My Lamictal has been upped 3 times. My dosage is 150 a.m 200 pm. I’ve gotten myself a referral to an epilepsy specialist, appointment 4 weeks. Any thoughts?


    Comment by Ronda Killion-Woodruff — March 9, 2014 @ 3:46 PM

  23. Hi Ronda,

    Sodium Valproate MIGHT be recommended as an adjunct drug. Ask your new epileptologist.

    In the meantime, are you keeping a daily seizure diary? That could help both of you to track your seizures. (It’s described in the article recommended below.)

    And for your visit, it’s vital that you are prepared and come armed with your questions. (You might want to write them down, in order of importance, since you don’t know how much time you’ll have with the new doc.)

    Here’s an article I think you might find helpful and interesting:

    Secrets to Better Care from Your Doctor


    Good luck!


    Comment by Phylis Feiner Johnson — March 9, 2014 @ 4:35 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've 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.

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