Accutane Stevens-Johnson Syndrome Skin Reactions Reported

Harvey Kirk

By Harvey Kirk
Posted February 17, 2010

ADD YOUR COMMENTS 15

Canadian health officials have issued a warning that side effects Accutane have been linked to severe skin reactions, including sometimes fatal conditions known as Stevens-Johnson syndrome (SJS) or toxic epidermal necrolysis (TEN). The brand name acne medication was discontinued in the United States last summer, amid dropping sales that were partially caused by a number of safety concerns, including a risk of inflammatory bowel disease, depression and birth defects.

The Accutane skin reaction warning was issued by Health Canada on February 11, indicating that there have been at least 66 cases of severe reactions potentially caused by Accutane side effects, including cases of Stevens-Johnson Syndrome (SJS), toxic epidermal necrosis (TEN), and erythema multiforme (EM). At least two people have died from the problems, according to a global database maintained by the manufacturer, Roche Holding AG.

Accutane (isotretinion) was first introduced in 1982 for the treatment of severe acne. Hundreds of lawsuits have been filed by former users of the medication, alleging that the manufacturer failed to adequately research their drug or warn about the risk of Accutane problems. Following a $25.16 million verdict in an Accutane lawsuit in New Jersey this week, the drug maker has lost all six cases that have gone to trial so far, with verdicts totaling $56 million.

ACCUTANE SKIN REACTIONS

Health Canada warns that the possibility of severe skin reactions and SJS, while rare, mean that patients should be closely monitored for signs of problems, and use of Accutane should be discontinued at the first signs of a skin reaction.

Stevens-Johnson syndrome is one of the most debilitating side effects which can occur as an adverse reaction to a medication. It results in a severe rash and blistering of the skin and mouth, and could include symptoms such as:

  • Rash, blisters or red spots on the skin
  • Blisters in the mouth, eyes, ears, nose or genital area
  • Swelling of the eyelids
  • Fever or flu-like symptoms

SJS causes the skin to burn from the inside out, and generally requires treatment in hospital’s intensive care unit or burn unit. When the condition covers more than 30% of the body it is referred to as toxic epidermal necrosis (TEN). SJS or TEN are fatal in about 5-15% of all cases.

15 Comments • Add Your Comments

  • candace says:

    I have suffered from a chronic skin rash on my mouth and blisters inside for years and extreme dryness and swelling of the eye.

    Posted on July 20, 2010 at 11:44 pm

  • Lady T says:

    I took Accutane in 2002=2003 timeframe. Approximately 45 days later, I developed a dry patch on my lower back. The patch itched horribly for days. I showed it to my sister and she thought it was “Ringworm”. I told her it was not as that spreads. I just happened to go to my physician for a Accutane checkup and mention this itchy dry spot. He looks at it half-heartedly and prescribed some expensive as Valentine stuff. Supposedly the best on the market. Anyhoo with no diagnosis I left. Soon after this drs visit, I broke out in a horrible rash over 3/4 of my body – itching severly. So bad I had to leave work and go straight to the Emergency Room. There I was diagnosis with Pitorsis Rosea (sic). Described as an unknown cause rash that develops a “Mother Patch” two weeks before the breakout. Has anyone made this link with Accutane. It was a awful nightmare that last about one month.

    Posted on August 13, 2010 at 3:42 am

  • ld says:

    i have the same. severe rash on sides of nose and on finger. it blisters up and at first I thought it was a bacteria. the doctor thought it was soriasis or rociacia. it flares up periodically and i tolerate it. I also have had UC flare ups since 2 months after i took accutane back in 1990. it has to be connected.

    Posted on February 17, 2011 at 10:29 pm

  • Jen says:

    When I took the brand name Accutane I did not have any of these patches however, during my second time on accutane I was on the generic Clovis and i had these red patches of skin that would never heal. Its like the skin would just peel off and they were round and itchy. I looked like a meth head with open skin sores. I was told at the time that this was just something that happened while on accutane. I also was diagnosed with severe disc degernative disease in my late twenties and i’ve never been in an accident. This is the only thing that could have caused it. I always thought the court cases against Accutane stemmed from people getting pregnant on the drug now I’m living proof of the dangers of taking it.I used to say it was worth its weight in gold because of how clear my skin was but now no money is worth the pain I deal with daily.

    Posted on February 22, 2012 at 3:51 pm

  • Debbie says:

    My 26 year old daughter completed the 6 month treatment of Accutane for her acne a few months ago. Now she has what the dermatologist says is “hives.” Cortisone cream and pills, then will try allergy testing. I just wish I knew if the rash is a delayed reaction from the Accutane. The rash comes and goes. She’s had it for about 3-4 weeks now.

    Posted on October 26, 2014 at 2:52 am

  • brent says:

    I have had horrible rash since taking Accutane 25 years ago. Been to every doctor in my area and beyond , last doctor was Stanford and they did Biopsy and said it is a drug reaction. Cant find anyone that knows how to treat it for me. Has pretty much destroyed chances for relationships and horribly affected my life. Rash starts with bumps all over the body then turned in to circular like ring worm looks horrible. It can grow from 1″ diameter to 10″ diameter and stays for months. Doctors have no idea how to treat it. If anyone has seen or experienced this and has information please help. It grows on legs ,stomach,underarms,and on my ass cheeks and lower back.

    Posted on August 31, 2016 at 9:28 pm

  • Tara says:

    I took Accutane for a little over a year starting in 2004. I stopped taking it due to the rash I developed that spread across my torso and thigh, it also caused my hands to swell so badly that I could not bend them. This reaction landed me in the ER, where the doctors told me to immediately discontinue taking it. (It seemed obvious to them as the cause because it was the only medicine I was taking)

    Since stopping the medicine I have gotten rashes that start anytime my skin is in a hyper-sensitive state. From a burn the first time, and most commonly on my nose due to allergies. The rash goes along my nose, sometime in my nasal passages starting on the inside of the nostril. At times it also happens, in the dip below my nose. So far never touching my mouth.

    For years I would tell doctors and they would provide some steroid cream or shot depending on its severity, which seemed to help but not quickly. Most recently a doctor described it as herpetic, meaning it is recurring, and put me on an anti-viral treatment. (Acyclovir) Same medicine as for shingles, only a lower dose. If I can catch it at the earliest signs it will stop it before it progresses to the weeping, pustule stage. It has been the best treatment for me, however I wish I could have it linked directly back to the drug since it has literally plagued me since stopping it.

    Posted on February 13, 2017 at 12:07 pm

  • jacque says:

    My derm put me on claravis 40mg. I only took it for 26 days and both my arms broke out in horrible rashes and blisters. I went back to my derm and he said there is no way it was from the claravis. It was is the only thing I was taking though. I ended up going to urgent care and they told me to stop taking it immediately and prescribed a steroid. my arms are clearing up but it freaked me out. has anyone heard of steve Johnson syndrome?

    Posted on September 6, 2017 at 6:18 pm

  • Sara says:

    I took this drug for 4 months in 2019, and I was given it negligently as I had almost no acne. I asked my dermatologist if it could harm my sensitive skin and she said no way, “it only does good stuff to skin.” When I was taking it my skin was dry and peeling off, but I was told to stay on the drug and use moisturizer. When I stopped taking the drug, my skin nightmare started. Macular, demarcated, raised inflammation around my mouth. Painful burning and stinging of the skin when water or cream is applied. Muscle twitching, itching, numbness, heat burning, and EXTREME dryness and irritation all around the mouth. I started health supplements to try to help and I religiously do skincare and try to avoid “triggers,” which are pretty much everything I enjoy, and I still cannot keep the skin at bay. I am constantly distracted by the irritation, itching, heat, and dryness on my face. My skin was fine before this drug and now I don’t know if it will ever heal, which is scary when I am only 22 and want to live a long life; but now every day is such a fight in this skin prison.

    Posted on February 8, 2020 at 5:36 pm

  • olivia says:

    I’m looking at the comments and all the cases are clearly very severe. I started taking accurate only 2 weeks ago and I have a few small spots on the back of my hand/wrist. It’s just a little more dry than usual but doesn’t hurt or feel weird at all. Did anyone’s start off like this?

    Posted on September 15, 2020 at 8:52 am

  • hannah says:

    I started taking accutane towards the end of june and everything was fine until my nose started to peel. I had spent a lot of time at the lake so I just thought it was a sunburn… As I kept picking at it , it started to bleed and i realize that it was from accutane. After about 2 months it finally went away
    I am now on my 5th month and it has came back. About a month and a half ago i noticed a colorless rash on my arms which then lead me to thinking it was psoriasis or eczema. Now today , I just spotted a burning rash on the back of my legs, the top of my nose is still peeling which causes it to bleed , the rash from my arms spread to my wrists and back of hands , and i have patches of who knows what on my cheeks. If anyone has experienced this , please let me know. It’s so scary and hurts

    Posted on November 18, 2020 at 12:00 am

  • Sarah says:

    I am on my 3rd month and am experiencing very similar rash-like dryness on the back of my hands. I had this on my first course and it didn’t get any worse, as long as I kept using lotion

    Posted on November 21, 2020 at 7:21 pm

  • Vanessa says:

    Very similar to the comment made by Sara, i took accutane for about 6 month in 2018, once i came off I have had severe burning and tingling sensation i have been everywhere and tried everything it’s extremely uncomfortable and distressing.

    Posted on March 18, 2021 at 9:57 am

  • Catherine says:

    Took accutane twice. Last time was in 2018. Have been battling a terrible itchy/swelling rash in my face since. I remember it appearing when J was on the drug. It went away, and came back. I’ve been battling it for almost 4 years and no one knows what it is. Very distressing, I have been taking antidepressants for about three years because of it. I hate accutane.

    Posted on May 29, 2021 at 2:54 am

  • Jessica says:

    I had already done accutane before with no problems in 2009. In 2012, my doctor put me on a stronger dose of accutane to help with my persistent acne. While on it, I broke out in hives from head to toe.They put me on prednisone. I then lost a third of my hair and had persistent rashes and sores on my skin. My skin would get so raw it would ooze and peel. This constant state of extremely raw skin lasted for almost a year. I had to take bleach baths because I kept getting MRSA staph infections all over my body. My skin ever since has been so sensitive to allergies. Any jewelry with nickel leaves me with a raw sore for over a week. I never had an issues with allergies on my skin prior. There are several other allergies I now have sensitivities to that I never had before. For the last 9 years, I have had on and off flare up with my skin. The only thing that has worked thus far is a strong dose of prednisone. I have taken a whole slew of medications to help prevent these skin issues and have spent thousands every year on this. I have done the Grand Rounds at the University of Utah and seen more doctors than I can keep track of. I now know how to manage my skin issues and it has been better. To anyone that is thinking of doing accutane- it’s not worth it. I would take acne over this.

    Posted on October 10, 2021 at 6:12 am

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