Kim Gale  |  September 9, 2020

Category: Allergic Reactions

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Doctor visits female patient in hospital

People who experience a Stevens Johnson syndrome rash are at risk for multiple organ failure and death, even though SJS syndrome may start with just a fever and other flu-like symptoms.

What Causes a Stevens Johnson Syndrome Rash?

Stevens Johnson syndrome is a severe allergic skin reaction, most often caused by certain medications.

Among the drugs most often identified as the instigator are:

  • Allopurinol (treats gout)
  • Carbamazepine (controls seizures)
  • Common painkillers such as acetaminophen (Tylenol), ibuprofen (Advil, Motrin), and naproxen sodium (Aleve)
  • Lamotrigine (controls seizures)
  • Nevirapine (treats HIV)
  • Meloxicam, Piroxicam, and other “oxicam” anti-inflammatories
  • Phenobarbital (controls seizures)
  • Phenytoin (controls seizures)
  • Sulfa-based antibiotics
  • Sertraline (anti-depressant)
  • Sulfasalazine (treats ulcerative colitis)

Patients who have certain risk factors also are more apt to develop the rare but serious Stevens Johnson syndrome. Anyone with the following circumstances should be aware of their own risks of the rash’s development:

Family history of Stevens Johnson syndrome: If a parent, sibling, or child has suffered from Stevens Johnson syndrome, you may be at an increased risk of developing it, too.

Previous bout of Stevens Johnson syndrome: If you have taken a medication that caused you to experience the severe skin reaction, you are at a greater risk of suffering another bout of Stevens Johnson syndrome if you take that same medicine again or if you take a medication that has a similar formulation.

Active viruses: If you’ve been diagnosed with hepatitis, herpes, HIV, or viral pneumonia, your immune system could be compromised, leaving you more vulnerable to Stevens Johnson syndrome.

Compromised immune system: Anyone with autoimmune diseases, such as HIV, lupus, or diabetes, and anyone who has undergone chemotherapy or is on medication to reduce rejection of an organ transplant may have a higher risk of developing the severe skin reaction. Chemotherapy drugs and anti-rejection medications such as prednisone can lower the body’s immune system.

Researchers also have found a genetic link that places some people at a greater risk of Stevens Johnson syndrome. A genetic marker identified as HLA B1502 has been found to cause people of Chinese descent to have a greater risk of the syndrome when they take carbamazepine. Similarly, Chinese people with the HLA B1508 gene who take allopurinol also are more apt to develop Stevens Johnson syndrome.

Children with mumps, the flu, cold sores (herpes simplex virus), Bornholm disease (coxsackievirus), or mononucleosis (Epstein-Barr virus) may be at a greater risk of developing a Stevens Johnson syndrome reaction because their immune systems are already taxed.

Early Stevens Johnson Syndrome Symptoms

Early signs and symptoms of Stevens Johnson syndrome include:

  • Fever
  • Sore mouth and throat
  • Fatigue
  • Burning eyes
  • Cough
  • Joint pain
  • Feeling generally unwell

Of course, these symptoms on their own are not an immediate indicator of Stevens Johnson syndrome—they are flu-like syndromes, and in many cases, may be unrelated to SJS at all. People with these symptoms should, however, always keep an eye on them to see how they develop as they begin to distinguish themselves from the flu, such as through widespread skin pain or the beginnings of a rash.

What Does a Stevens Johnson Syndrome Rash Look Like?

After a few days of experiencing a fever and flu-like symptoms, you will begin developing painful red or purple skin patches that appear burned and peels away. Painful blisters are apt to develop in the mucus membranes of the skin, mouth, nose, and genitals. Even the eyes may develop red, painful sores that cause constant watering. WebMD says these symptoms necessitate an immediate trip to the emergency room.

The rash may appear as flat or wide and slightly raised red or purple spots that become blisters. These blisters usually start on the trunk and extend rapidly onto the face and limbs. At the same time, internal blisters may form, which cause a sore throat and difficulty swallowing in addition to generalized aches and pains due to internal inflammation.

Internal organs and mechanisms that are susceptible to effects from Stevens Johnson syndrome include the liver, kidneys, lungs, bone marrow, and joints.

People who have suffered from Stevens Johnson syndrome have said it feels as if you’re burning from the inside out.

Up to 10 percent of patients diagnosed with Stevens Johnson syndrome die from the complications.

When the rash escalates and becomes toxic epidermal necrolysis (TEN), the mortality rate increases to 30 percent. TEN results in blisters that merge together, causing the skin to peel away in sheets at a time. After the skin sheds, the body is left with raw, damaged open areas of fluids and salts that are no longer protected by the skin. The open areas without skin are vulnerable to infection, which can turn into deadly sepsis (blood poisoning).

Does a Stevens Johnson Syndrome Rash Itch?

The Stevens Johnson syndrome rash is not generally known as an itchy rash because it is more like a burning skin condition that causes pain.

How to Treat a Stevens Johnson Syndrome Rash

Male doctor shakes hand of male patient in hospitalPeople with Stevens Johnson syndrome rash who are hospitalized may be treated in the intensive care unit or a burn unit.

Initially, the doctors will try to determine what has caused the syndrome, and if it is linked to a medication, that medication will be stopped immediately.

Other treatment may include strong pain medication, cool, moist compresses placed on affected areas of the skin, and replacement fluids that may need to be provided through a tube that goes from the nose to the stomach.

Numbing mouthwashes may help relieve pain inside the mouth. Special eye drops or eye ointments may relieve optical symptoms.

In some cases, patients may be prescribed corticosteroids to reduce inflammation and antibiotics to treat sepsis.

Recovery times vary from weeks to months, but many patients continue to feel tired for many weeks after leaving the hospital.

Are Mainly the Elderly Apt to Develop Stevens Johnson Syndrome Rash?

Not necessarily. A 22-year-old woman who thought she had been bitten by insects and then visited her dentist for a toothache was diagnosed with Stevens Johnson syndrome in August 2018, reports Ladbible.

Bethan Paley of North Yorkshire, England said the insect bites were actually the rash and the toothache was really the start of blistering.  Covered in painful watery blisters, she ended up in the hospital where she needed intervention from a ventilator in intensive care after the blistering affected her lungs and caused respiratory issues.

Bethan said her parents were told by doctors that their daughter might not make it out alive.

Bethan survived five weeks on the ventilator and endured her skin peeling off because the blistering was akin to third-degree burns. She was eventually treated at a larger hospital’s burn unit and said she was afraid she really was going to die.

The blistering was so thoroughly covering her body that it made her hair and nails fall out. Bethan said when her scalp healed enough to withstand a good shaving, she shaved it all off to give her blonde locks a fresh start. It’s just now getting to a length that she allows her to feel comfortable with her appearance.

She told Ladbible she’s happy she made it, but she is plagued with continuing medical problems, including lung issues and extremely dry eyes, which require lubricant drops every 30 minutes.

As far as why she developed Stevens Johnson syndrome, she said she blames an antidepressant that she had recently started taking. She read the rare and dangerous rash can be a side effect of the medication, which was not identified.

Filing a Stevens Johnson Syndrome Lawsuit

More and more patients are coming forward with allegations of suffering from Stevens Johnson syndrome after using the anticonvulsant Dilantin, alleging the medication caused their SJS.

If you or someone you love has suffered from Stevens Johnson syndrome or toxic epidermal necrolysis after using Dilantin (phenytoin), you may be able to file a lawsuit and pursue compensation. Filing a lawsuit cannot take away the pain and suffering caused by these complications, nor can it bring a loved one back to life, but it can at least help to alleviate the burden incurred by medical expenses, lost wages, and more.

Filing a lawsuit can be a daunting prospect, so Top Class Actions has laid the groundwork for you by connecting you with an experienced attorney. Consulting an attorney can help you determine if you have a claim, navigate the complexities of litigation, and maximize your potential compensation.

Join a Free Stevens Johnson Syndrome Symptoms & Toxic Epidermal Necrolysis Lawsuit Investigation

You may qualify for this investigation under the following circumstances:

  • You or loved one took an over-the-counter or prescription drug that caused you to develop SJS or TEN;
  • You or your loved one was diagnosed with SJS or TEN; and
  • You or your loved one was hospitalized because of SJS or TEN.

You may be able to hold the drug company accountable by joining this Stevens Johnson Syndrome lawsuit investigation. 

See if you qualify by filling out the form on this page. 

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