Epilepsy Talk

Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal | November 19, 2018

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’m on Dilantin have been for 55+ years.
    I also have Idiopathic Chronic Urticaria just the fancy name for Hives. When I try to wean off Dilantin it triggers seizures. My body is addicted to that med.

    Liked by 1 person

    Comment by Bonnie — December 22, 2019 @ 12:51 PM

  2. Happily the hives haven’t progressed to SJS, have they?


    Comment by Phylis Feiner Johnson — December 22, 2019 @ 1:15 PM

  3. Dilantin was one of the first combo meds i was on in late 60’s HATED IT .. then back on believe ’95 , with mysoline SJS came back , then came HBP , drs put me on HCTZ , then had 3 seizures in one day , with combo of the Dilantin & HCTZ made Dilantin drop, and BP out of control,200/ 90 ,liver enzymes, were high injury to my back , to were had to cement plastic my 11-2 Vibrate, my neck , & tail bone area .. every time hits colder weather cant move … rashes, were bleeding like crazy even the drs put me on Lamictal, made my speech slurred , seems my itching was going crazy again , even my throat, started closing up on me ..After all that really glad my neuro put me on Keppra only thing that worked

    Liked by 1 person

    Comment by Cathy Flowers — May 27, 2021 @ 9:58 AM

  4. OMG Cathy. You’ve really gone through the mill. I’m sorry for all your suffering, but glad you finally found a solution.


    Comment by Phylis Feiner Johnson — May 27, 2021 @ 10:02 AM

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    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.

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