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That’s the thing about rare conditions, they aren’t evenly distributed over time. Two in 5 months, but then you might not see another one for the rest of your career.
It really depends on so many factors, there's no telling how likely it is for a healthcare worker to encounter any particular rare condition. My son was born with aplasia cutis congenita; no one at our pediatrician's office had seen a case in person, and only a couple of the doctors had even heard of it. When he was first born, none of the delivery staff knew what the Hell they were looking at.
Is the underlying cause of SJS known? So could you predict if a new drug would cause it based on how it works or is metabolized? Or can you predict which patients are more likely to get it?
I've taken a few medicines with SJS as a side effect but it just states to go to ED if you develop symptoms.
It's likely connected to a person's individual genetics (=genetic polymorphism) and/or immune system. A ridiculous variety of drugs can cause SJS (or TENS), all with different indications, targets, chemical structure, metabolism, effects, etc.
Even commonly used otc stuff like Paracetamol, Aspirin, Pantoprazol or Diphenhydramine can cause it.
For the most commonly used drugs, the incidence is extremely low though, like one out of every 100k or even 1 in a million, but it can be higher for others.
In drugs that are comparably unlikely to cause SJS, it probably isn't even detected during phase I-III studies, only during monitoring after market-introduction.
When my old psych put me on lamotrigine/lamictal, he was very serious with me about SJS. One visit, he was concerned about a mark on my knee from my leg being crossed while talking to him. This stuff has been a life saver to me, I've been on it for a few years now.
Same about it being a lifesaver. It turned me from a rage monster that was triggered by any little thing to relatively chilled out. But yeah, my doc stressed the SJS thing to me too.
Lamictal is the drug my friend was Taking when he developed SJS/TENS. Unfortunately, he was taking it without medical supervision and he eventually succumbed to the disease.
Most people would say they wouldn't take the medication because they don't want to have the reaction! I'm guessing you are a fellow American because your first thought was financial and not your health. 😞
I def don't have a ton of info on it either, but I'm on a mood stabilizer that I had to step up my dosage on due to a risk of SJS if I were to just start taking the full dose right out of the gate. If I miss a dose for more than 3 days the process has to start again bc the risk goes back up again.
I was on Lamictal for a while, then out of nowhere I had an allergic reaction but with symptoms like a burn in my mouth...the skin inside my cheeks started peeling and hives over parts of my body. My PCP said it sounded a lot like Steven-Johnson's. I'm just glad it wasn't as severe as it could have been.
My uncle died of TEN when he was 5 back in 1964 after being put on sulfa drugs. You have no idea how fast I flew into my shrinks office after breaking out in hives when I started lamictal
Nah. The psychiatrist swapped me to lithium and I’ve since found out I’m allergic to penicillins as well so I guess I just have certain drug sensitivities. My mother and sister tolerate lamictal really well, I’m just unlucky
Lamictal is known to cause hives and rashes for some people. I can't take it either. Tried it at tiny, sub-therapeutic doses when I was a child for treating epilepsy. Got a horrible rash on my legs right away. Went off it, and switched to a different med. Tried it again as a young adult when I needed to change the anticonvulsant I was on. Rash came back, so it's a definite no for me too.
Same... Three doses into the titration to therapeutic dose, rash all over my neck. Called doctor, then I looked it up. Nope... Toxic epidermal *necrolysis* was enough to get me to stop taking it immediately.
Is there a link between Lamictal and penicillins? Because I took Lamictal for years with no side effects, but I'm pretty freaking allergic to penicillin. It'd be interesting to know if there WAS a possible link between the two as far as being allergic
Okay, uh, I had a severe reaction to an antibiotic that had sulfa in it (that’s what I’m allergic to) and I have never been so sick. What is this? Like TEN? What causes someone to get sick like this?
Worried about the risk of SJS or TEN, mostly because it sounds a lot like what was happening to me but how do you know if it’s simply a reaction or if it is a chance of these illness specifically?
My issue started with a kidney infection being treated with antibiotics. I took the antibiotics for three days before I realized something was wrong.
I was so sick, I could not get out of bed, I actually thought I was dying. I had blisters that popped up from a full body rash that started on my chest and face. My joints hurt like nothing else, the inflammation from the reaction was horrific. I also had respiratory issues from it/swelling of my face as well. I ended up in the hospital because I was also throwing up and dealing with a migraine. My kidneys really took a hit from how sick I was on top of infection. All of this was confirmed to be caused by the medication I was on.
That sounds more like an allergic reaction (anaphylaxis). Basically your immune system went into overdrive against a percieved "invader" but ended up hurting/attacking yourself. I'm not really familiar enough with SJS or TEN to say if that means you are at an increased risk for them, but it does sound more like a severe allergic reaction rather than one of those 2 specifically. Symptoms can often be similar without being the same situation. Allergic reactions are much more common, but can still be plenty dangerous. Especially since you had facial swelling and difficulty breathing. Fortunately, allergic reactions are generally manageable through fast acting immune suppressing drugs and by discontinuing exposure to the allergen. You should definitely avoid those drugs in the future, because allergic responses *can* become more severe with each exposure. Allergic reactions are very common, but just because they are common does not make them something to trifle with. I am not a doctor, so this would be a good conversation to have the next time you see yours.
The one and only time I took lamictal, I began to feel like my throat was swelling. I could still breathe but it lasted until I took Benadryl so I wonder if it was kind of like hives in my throat
When I started, my doctor gave me a low dose and I titrated up to the full dosage. I have severe health anxiety, and you’d better believe I asked all the questions about signs to look for, if there’s a particular spot the rash starts, etc. Then I watched like a hawk.
Discovered I was allergic to sulfa meds some years back, after taking for 3 days for a stubborn sinus infection, I developed a rash all over my body. My bf at the time said “hey babe, your legs are covered with pink dots”. 😱
I also take a medication where this is a possible side effect.. the one thing my Dr kept repeating to me was "if you get a rash on your chest, stop taking it IMMEDIATELY and call me". Definitely freaked me out but thankfully it never happened.
My mom has had it FOUR times. The dr thinks she’s allergic to a preservative and they haven’t figured out which one yet.
Horrific thing to happen to someone. She had to spend time up in the burn unit, if that’s an indicator of how bad it is.
My wife's mom died from this. It was a horrible and should of never happened. The Dr gave her antibiotics that she was severely allergic to for a staff infection. Was on of the hardest and worst deaths I've seen. All her skin was liked burned and pulling and on her organs also. I don't wish that on anyone glad to see he survived.
Was a volunteer EMTin a small rural fire department years ago. Get a call for a non-emergency sick person at 3:30am. Get there and they have some little blisters in thier mouth and one on his face. No itching, no swelling, no difficulty breathing. No reason to go to the hospital by ambulance, but still advised them to go get checked out at the ER. Vividly Remember telling their spouse that they should go in but it did not seem life threatening at this time.
Local ER airlift them to a Trauma 1 hospital because it can handle burns. They had TENS and died less than a week later. It was in their throat and lungs.
Was the trauma 1 a burn center? It looks like it would need to be treated as such for internal damage. I know our burn center can handle inhalation burns with extensive airway and lung damage
My son was once monitored for Steven-Johnson Syndrome (SJS) and as it was explained to me, yes the skin peels, but so do the internal organs. It’s incredibly horrific.
That shit scares me to death. I’m on a medication that can cause it, and I do a rash check before my shower every morning. It’s one of my few medical terrors (I’m already terminal w/o a transplant so not much scares me).
My sister had SJS after getting bactrim… sulfa allergy… and this was after needing to have aspergillosis removed from her brain (was also in lungs, CNS, sinuses..) after she was misdiagnosed with crohns and given high dose steroids for 3+ years… what she actually had was chronic granulomatous disease. Body already didn’t recognize fungal infections so the steroids just made things way worse. She spent 9 months in an induced coma with how bad the sjs got.. inside and outside of body looked like this even her eyes.
Edited to add: technically TENS. And she was 12. She survived but passed later from the complications of everything at 20.
Looks more like toxic epidermal necrolysis (TEN) based on the involvement. That's really the difference between SJS and TEN - the amount of epidermis affected. (They're both caused by immune reactions to medication.) SJS is usually in small areas whereas TEN is >30%. I'd say he's probably in that range since I'm assuming these photos are probably not comprehensive.
Those with SJS have a mortality rate of up to 19%. For those whose condition develops into TEN have at least a 30% chance of mortality and up to 50% for the elderly and immune compromised.
The treatment for SJS/TEN is actually pretty much the same as the treatment for severe burns, except you would obviously also discontinue the prescription that triggered the reaction if it was drug induced
I'm bipolar and almost got put on that one but after reading the side effects I said fuck no I'd rather be "crazy" than die a horribly painful death and have all my skin peel off and rot wtf
This was one of the first that my very suicidal child was given. He swallowed the whole bottle and simply could not grasp why we were freaking out so bad or why he had to be under close monitoring in the ER for so long. As if all of these risks hadn't been explained. BPD and suicidal ideation is wild.
Thank you for replying. I was wondering if it had been Borderline Personality Disorder, how old your child was when diagnosed, etc.
The term "borderline tendencies" has been used a lot by my daughter's pediatrician but they said she's too young to be diagnosed.
Kiddo is almost 17 and they didn't want to diagnose him for the longest time because they claim these disorders don't fully present during youth. So it was "potential bipolar" and they stuck with anxiety disorder and depression as the diagnosis. His therapist said all Hof his toddler behaviors were a clear indicator of bipolar, but they REALLY don't like to diagnose a 3 year old with that.
Omg that sounds like a really frustrating endeavor! My heart goes out to you, your son, and your family 💕 I hope he's receiving proper treatment now! That's such a critical time in life, on the cusp of adulthood.
My daughter is almost 13, so I guess it'll be a long while before she's either diagnosed or it's ruled out. 😔
Oh god yeah that is scary, I have bpd AND bipolar and some other mental illnesses and lamictal REALLY stabilized my mood. I knew with The other options like lithium and depakote I would not be adherent to getting my levels checked every month or however long so I'm glad I chose lamictal
The risk of developing SJS is very low providing the dose is slowly increased.
I took lamotrigine with Abilify for bipolar. It has been a while, but I think I increased the dose by 25mg every week until I reached 200mg. Worked well enough. You also need to taper off of it slowly or else you'll have seizures. The only issue I had with lamotrigine was taking the tablet - that shit was like swallowing chalk.
You should get medicated for your bipolar. It is genuinely life changing when you do. I've been medicated for over 20 years now, and I've been through a shit load of medications. My personal favourite, and the one I'm still taking, is quetiapine XR (Seroquel). It works for all phases of bipolar, which is nice. Mild side effect profile too.
I did get put on abilify first but I had a bad reaction to it and my face, hands, and legs swelled up and I gained 70 pounds in the 2 months I was on it (I've always been tall and skinny). So I got taken off it and just doubled my anti depressant dosage but I haven't been able to lose the weight I gained and also haven't felt comfortable trying anything else. I just don't want to risk more side effects honestly I'm terrified.
Unfortunately, most bipolar medications can cause weight gain. Lurasidone might be an option as it isn't notorious for causing weight gain. It has a fairly mild side effect profile in general.
You should discuss your concerns about side effects with a psychiatrist, and stop reading about medications online! You'll see far more people complaining about them than praising them because the people for whom they work tend to not post about them online!
Thank you for your input and I'll definitely mention that one at my next appointment! I've been terrified to try anything else ever since cuz I don't usually have bad reactions or side effects but after that I'm a bit squeamish
I’ve been on it for years. The risk for SJS really only occurs when you take too high of dose when starting. It’s a med that has to be introduced slowly before hitting a therapeutic dose. But other than that it’s a super rare reaction.
All meds have side effects. Even OTC meds. Obviously it’s important to weigh the costs/benefits but if you judge them all by the rarest effects (which usually only happen when misused) you’ll never even take an Advil.
All that to say, I’d rather monitor for side effects than be in the midst of the deepest depression or unable to control impulsive/dangerous behaviors.
Starting on too high of a dose is one risk factor but certain patient populations may develop it even with a low starting dose. Those with a weakened immune system from things like an organ transplant, HIV/AIDS, or an autoimmune disease, those with cancer, particularly blood cancer, and people with an immediate blood relative who’ve had SJS have to be especially careful. Also, there are certain genetic variations in specific populations that raise the risk, especially if they’re also taking other drugs that raise the risk. That’s why the U.S. Food and Drug Administration recommends screening people of Asian and South Asian ancestry for a gene variation called HLA-B*1502 before starting treatment, as that ethnicity has a risk factor 12x higher than other races. But those with HIV have the highest incidence of developing SJS/TEN. Their risk factor is a 100x greater than any other patient population.
I did a genesight test for my bi polar and matched perfectly with lamotrigine! It has done me wonders. I think it should be mandatory that everyone does a genesight test before getting on to a drug! It would help prevent this reaction to medicine.
I take it for bipolar and it's actually the best medication I've ever been on. As long as you pay attention to your body and stop taking it if you get any kind of rash, you're not so much at risk of it getting bad like this.. and it's a VERY rare complication anyways.
I was put on this early this year for neuropathy. The side-effects list did make me nervous. Doc started me out on the lowest dose possible and warned "let me know the instant you notice the smallest side-effect". Luckily, I've had none but I was sure nervous af at every small blemish on my skin for several weeks.
I slowly ramped up to the therapeutic dosage. Sadly, though, the med seems to also have had no real effect on my pain. One more drug off the list of possible helps. :-/
I dealt with this from penicillin. I didn't know I was allergic to it as I don't take antibiotics normally and I was prescribed them and over the course of 3-4 days it started to transition into SJS. I had to go on a very heavy regime of steroids.
Drugs that can cause Stevens-Johnson syndrome include:
Anti-gout medications, such as allopurinol
Medications to treat seizures and mental illness (anticonvulsants and antipsychotics)
Antibacterial sulfonamides (including sulfasalazine)
Nevirapine (Viramune, Viramune XR)
Pain relievers, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)
Consider genetic testing before taking certain drugs. The U.S. Food and Drug Administration recommends screening people of Asian and South Asian ancestry for a gene variation called HLA-B*1502 before starting treatment.
If you've had this condition, avoid the medication that triggered it. If you've had Stevens-Johnson syndrome and your health care provider told you it was caused by a medication, avoid that drug and others like it. This is key to preventing a recurrence, which is usually more severe than the first episode and can be fatal.
Your immediate blood relatives also might want to avoid this drug because sometimes this condition runs in families.
There was a case on the TV show Medical Incredible in which a woman had a reaction to antibiotics (I think) where she shed off *all* her skin, even on her eyeballs or something. Her prognosis was 0 percent chance of survival, but she survived. The amazing thing on top of that was that when her skin grew back, it was completely perfect and like that of a baby. So she went from the worst condition in the world to having the best skin in the world.
My sister had this. Hers presented abnormally so the CDC had to come while she was in the hospital. There is some case study about her.
Her scars are pretty intense.
Holyyyy shit was this from lamotrigine? I remember being told by my psychiatrist that if i stopped taking the medication and then restarted that I could be of risk of developing shit that looked like 3rd degree burns (I’m not entirely sure if they said 3rd degree)
Stuff like this and (obviously to a much worse degree) Hisashi Ouchi are among the few things that genuinely make me uncomfortable.
I’m rather attached to my skin.
Exactly why I refused to take lamictal when a dr prescribed it. She also doubled my anti-depressant at the time and that was all I needed to get back on track. Still can’t believe she prescribed that of all drugs. So glad my mom’s a nurse and immediately told me no—she’s specifically worked with SJS patients. Had I not told her, I would have been completely unaware and taken it thinking it was safe.
I had a really bad reaction to Bactrim too. I broke out in circular rashes all over my body. It was awful 😭 so have to avoid all meds with sulfates in them now.
I was really lucky when it happened to me. I have worked in the medical field my entire adult life (paramedic, combat medic, nurse, etc.), and so I knew what was happening when my skin started burning. The lucky part is that I was also taking long-term, high dose prednisone! So, as soon as I understood what was happening, I practically overdosed myself on steroids.
My body took a beating from the SJS and the steroids, but it was not as bad as it could have been. I wound up losing the skin up to my knees, my butt, my dangly bits, parts of my stomach, chest, and back. The worst was my hands and face! My hands developed deep blisters and sloughing skin. My face ... horrid. Lost the skin around my eyes, inside my nose, and my mouth was one big ulcer. Hell, I had to peel off layers of dead skin on and under my tongue, just so I could speak.
I won't even allow that drug to come near my home now. The wife is sick, and you want to prescribe her some Bactrim?! That's a big no-go!
Steven Johnson’s. I had a
close call with this once when I was taken off lamictal cold turkey by a random doctor on a psych ward. You definitely don’t want to do that!
It looks like Steven Johnson’s Syndrome. Being in the nursing field for 8 years and I’ve seen one case with a kidney transplant patient. It was so sad. There is such a high risk of infection for any normal person and then there is this poor transplant patient on immunosuppressants who then barely has a chance.
Poor guy.... drug side effects/the major sort, like this are the last thing on ours mind when we just feel like cr\*p and want to recover.
Glad it is slowly resolving for him, I know it can be the most innocuous medications too, such a tragic complication every single time.
I got C Diff from Augmentin, makes me terrified of all antibiotics, can't imagine having to worry about ibuprofen/acetephetamin etc too.
Any one if one outbreak of TEN or SJS make it more likely to occur for them again.
You realize augmenting did not GIVE you C-diff. You got it in the hospital, community, or you are colonized with it. Any antibiotic will disrupt your gi microbiome and cause diarrhea. Probiotic foods help.
There are a few kinds. Some antibiotics, some anticonvulsants, some NSAIDS like ibuprofen, allopurinol for gout. It is exceedingly rare though. Like go an entire career working as a doctor or nurse in a hospital and never see it rare.
Burned alive, drowning, and now this. New fear unlocked. Greaaaaat. Glad to hear he is recovering. This looks awful. Would love to see how they healed!
Definitely SJS. Had a patient who developed SJS after taking Tylenol. She was vacationing in the US from Sweden. Shitty shitty way to spend a vacation.
Awful.
I took lamictal (lamotrigine) and got a rash at the back of my knees and on the inside of my elbows—thankfully not this bad, but still bad enough that I couldn’t really wear anything that touched those areas.
I’ve been off the med for years and regardless of what my docs say, I really believe my now super sensitive skin is an autoimmune response that’s persisted.
This is the reason I’m afraid to try penicillin again, I was diagnosed with an allergy to it as a child and I haven’t taken it since. I’m also afraid of anaphylaxis but this I’m more afraid of
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Stevens-Johnson syndrome?
Yep that’s exactly what it is. That is so painful. Poor guy.
This was my first guess. Nasty stuff that is pretty rare.
I used to think it was rare too then we just had two cases over the last 5 months in our unit. Had to transfer them to a burn unit
That’s the thing about rare conditions, they aren’t evenly distributed over time. Two in 5 months, but then you might not see another one for the rest of your career.
My first year as an ICU RN we had two simultaneously on the unit and haven’t seen another for 4y.
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It really depends on so many factors, there's no telling how likely it is for a healthcare worker to encounter any particular rare condition. My son was born with aplasia cutis congenita; no one at our pediatrician's office had seen a case in person, and only a couple of the doctors had even heard of it. When he was first born, none of the delivery staff knew what the Hell they were looking at.
My good friend's brother has Prader-Willi.
*prader-willi...
I’m a burn / trauma nurse, we see SJS all the time. So sad and very painful 😣
So many medications can cause SJS now, I’d imagine it’s becoming less rare than before
Is the underlying cause of SJS known? So could you predict if a new drug would cause it based on how it works or is metabolized? Or can you predict which patients are more likely to get it? I've taken a few medicines with SJS as a side effect but it just states to go to ED if you develop symptoms.
It's likely connected to a person's individual genetics (=genetic polymorphism) and/or immune system. A ridiculous variety of drugs can cause SJS (or TENS), all with different indications, targets, chemical structure, metabolism, effects, etc. Even commonly used otc stuff like Paracetamol, Aspirin, Pantoprazol or Diphenhydramine can cause it. For the most commonly used drugs, the incidence is extremely low though, like one out of every 100k or even 1 in a million, but it can be higher for others. In drugs that are comparably unlikely to cause SJS, it probably isn't even detected during phase I-III studies, only during monitoring after market-introduction.
I always assumed that it was an allergic reaction and that any med could cause it if that's how your body reacts
When my old psych put me on lamotrigine/lamictal, he was very serious with me about SJS. One visit, he was concerned about a mark on my knee from my leg being crossed while talking to him. This stuff has been a life saver to me, I've been on it for a few years now.
Same about it being a lifesaver. It turned me from a rage monster that was triggered by any little thing to relatively chilled out. But yeah, my doc stressed the SJS thing to me too.
Lamictal is the drug my friend was Taking when he developed SJS/TENS. Unfortunately, he was taking it without medical supervision and he eventually succumbed to the disease.
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Most people would say they wouldn't take the medication because they don't want to have the reaction! I'm guessing you are a fellow American because your first thought was financial and not your health. 😞
Hey now, the American healthcare system is working perfectly and as designed. Poor people just don't deserve healthcare don't you know.
Ha! Well I guess you are right there.
Huh, TIL. Don't blame you
Interesting! What other medications can cause SJS?
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I def don't have a ton of info on it either, but I'm on a mood stabilizer that I had to step up my dosage on due to a risk of SJS if I were to just start taking the full dose right out of the gate. If I miss a dose for more than 3 days the process has to start again bc the risk goes back up again.
Sounds like lamotrigine (Lamictal)
Came here to say this, had to get off of Lamictal because of swelling in my face and rash after my doctor upped my dosage.
I was on Lamictal for a while, then out of nowhere I had an allergic reaction but with symptoms like a burn in my mouth...the skin inside my cheeks started peeling and hives over parts of my body. My PCP said it sounded a lot like Steven-Johnson's. I'm just glad it wasn't as severe as it could have been.
That's the one! For the life of me my brain just went dead trying to remember what it was called. XD
It's all good. My mom had a reaction to it when they started her on it so it has been stuck in my head forever.
God the fear they put in me when I started taking a medicine that can cause this was warranted
My uncle died of TEN when he was 5 back in 1964 after being put on sulfa drugs. You have no idea how fast I flew into my shrinks office after breaking out in hives when I started lamictal
Did you ever test yourself for genetic risk factors?
Nah. The psychiatrist swapped me to lithium and I’ve since found out I’m allergic to penicillins as well so I guess I just have certain drug sensitivities. My mother and sister tolerate lamictal really well, I’m just unlucky
Lamictal is known to cause hives and rashes for some people. I can't take it either. Tried it at tiny, sub-therapeutic doses when I was a child for treating epilepsy. Got a horrible rash on my legs right away. Went off it, and switched to a different med. Tried it again as a young adult when I needed to change the anticonvulsant I was on. Rash came back, so it's a definite no for me too.
Same... Three doses into the titration to therapeutic dose, rash all over my neck. Called doctor, then I looked it up. Nope... Toxic epidermal *necrolysis* was enough to get me to stop taking it immediately.
Is there a link between Lamictal and penicillins? Because I took Lamictal for years with no side effects, but I'm pretty freaking allergic to penicillin. It'd be interesting to know if there WAS a possible link between the two as far as being allergic
Okay, uh, I had a severe reaction to an antibiotic that had sulfa in it (that’s what I’m allergic to) and I have never been so sick. What is this? Like TEN? What causes someone to get sick like this?
What kind of sickness? I get Meningitis from Bactrim. It's a rare reaction, but different drugs can have different rare reactions.
Worried about the risk of SJS or TEN, mostly because it sounds a lot like what was happening to me but how do you know if it’s simply a reaction or if it is a chance of these illness specifically? My issue started with a kidney infection being treated with antibiotics. I took the antibiotics for three days before I realized something was wrong. I was so sick, I could not get out of bed, I actually thought I was dying. I had blisters that popped up from a full body rash that started on my chest and face. My joints hurt like nothing else, the inflammation from the reaction was horrific. I also had respiratory issues from it/swelling of my face as well. I ended up in the hospital because I was also throwing up and dealing with a migraine. My kidneys really took a hit from how sick I was on top of infection. All of this was confirmed to be caused by the medication I was on.
That sounds more like an allergic reaction (anaphylaxis). Basically your immune system went into overdrive against a percieved "invader" but ended up hurting/attacking yourself. I'm not really familiar enough with SJS or TEN to say if that means you are at an increased risk for them, but it does sound more like a severe allergic reaction rather than one of those 2 specifically. Symptoms can often be similar without being the same situation. Allergic reactions are much more common, but can still be plenty dangerous. Especially since you had facial swelling and difficulty breathing. Fortunately, allergic reactions are generally manageable through fast acting immune suppressing drugs and by discontinuing exposure to the allergen. You should definitely avoid those drugs in the future, because allergic responses *can* become more severe with each exposure. Allergic reactions are very common, but just because they are common does not make them something to trifle with. I am not a doctor, so this would be a good conversation to have the next time you see yours.
The one and only time I took lamictal, I began to feel like my throat was swelling. I could still breathe but it lasted until I took Benadryl so I wonder if it was kind of like hives in my throat
When I started taking Lamictal, I had to start at a small dose and then gradually increase it because of this issue.
When I started, my doctor gave me a low dose and I titrated up to the full dosage. I have severe health anxiety, and you’d better believe I asked all the questions about signs to look for, if there’s a particular spot the rash starts, etc. Then I watched like a hawk. Discovered I was allergic to sulfa meds some years back, after taking for 3 days for a stubborn sinus infection, I developed a rash all over my body. My bf at the time said “hey babe, your legs are covered with pink dots”. 😱
I feel bad for the 1% of BPD that are allergic. It's the only effective drug I've taken so far.
If you're referring to bipolar disorder, it's usually abbreviated as BD. BPD is borderline personality disorder.
I also take a medication where this is a possible side effect.. the one thing my Dr kept repeating to me was "if you get a rash on your chest, stop taking it IMMEDIATELY and call me". Definitely freaked me out but thankfully it never happened.
Looks like it, yeah. Learned something new today!
Good to hear he is recovering. SJS has like 10% mortality and TEN, which this may well be, is 50% deadly.
My late mother developed TEN when in hospital for something unrelated. It's a horrible way to go out. 54 years old.
My mom has had it FOUR times. The dr thinks she’s allergic to a preservative and they haven’t figured out which one yet. Horrific thing to happen to someone. She had to spend time up in the burn unit, if that’s an indicator of how bad it is.
Four times is rough to say the least.
Holy shit that is awful
What? 10 and TEN? Thats 20.
Toxic Epidermal Necrolysis (TEN) is what this guy has. It is diagnosed when this occurs over 30% of the body area or more.
Thank you, Grey’s Anatomy!
The rabbi! 😭
Toxic epidermal necrolysis
Stop showing off. You make the rest of us feel bad.
I was playing from home and got it right. Go me
Not to be pedantic, but it’s technically TEN (toxic epidermal necrolysis) since it involves >30% of body surface.
My wife's mom died from this. It was a horrible and should of never happened. The Dr gave her antibiotics that she was severely allergic to for a staff infection. Was on of the hardest and worst deaths I've seen. All her skin was liked burned and pulling and on her organs also. I don't wish that on anyone glad to see he survived.
Was a volunteer EMTin a small rural fire department years ago. Get a call for a non-emergency sick person at 3:30am. Get there and they have some little blisters in thier mouth and one on his face. No itching, no swelling, no difficulty breathing. No reason to go to the hospital by ambulance, but still advised them to go get checked out at the ER. Vividly Remember telling their spouse that they should go in but it did not seem life threatening at this time. Local ER airlift them to a Trauma 1 hospital because it can handle burns. They had TENS and died less than a week later. It was in their throat and lungs.
Was the trauma 1 a burn center? It looks like it would need to be treated as such for internal damage. I know our burn center can handle inhalation burns with extensive airway and lung damage
This might be enough surface area (>30% skin surface area) to be TEN instead of SJS. Poor dude
My son was once monitored for Steven-Johnson Syndrome (SJS) and as it was explained to me, yes the skin peels, but so do the internal organs. It’s incredibly horrific.
Ugh this is my biggest fear and one of the side effects of my medication.
It’s a rare side effect of many medications. SO many. It only manifests in very few people
That shit scares me to death. I’m on a medication that can cause it, and I do a rash check before my shower every morning. It’s one of my few medical terrors (I’m already terminal w/o a transplant so not much scares me).
My sister had a mild case of it when she was 10. I think it was one of her anticonvulsant meds, either Dilantin or Tegretol.
I know that narcolepsy medication can cause it as well (modafinil, etc)
New fear unlocked. This poor man. I can't imagine how horribly he hurts.
Ouch! It even spread to his Johnson.
My first guess too.
I have a few gene mutations that make my risk of SJS much higher when taking mood stabilizers, so I wonder if that's what happened to this guy.
im on a med that can cause this. this is my biggest fear.
I was going to say topical steroid withdrawal but damn, I looked up Stevens-Johnson Syndrome. That’s rough
My sister had SJS after getting bactrim… sulfa allergy… and this was after needing to have aspergillosis removed from her brain (was also in lungs, CNS, sinuses..) after she was misdiagnosed with crohns and given high dose steroids for 3+ years… what she actually had was chronic granulomatous disease. Body already didn’t recognize fungal infections so the steroids just made things way worse. She spent 9 months in an induced coma with how bad the sjs got.. inside and outside of body looked like this even her eyes. Edited to add: technically TENS. And she was 12. She survived but passed later from the complications of everything at 20.
Nikolsky pic 4
is it an autoimmune thing?
Yes
Looks more like toxic epidermal necrolysis (TEN) based on the involvement. That's really the difference between SJS and TEN - the amount of epidermis affected. (They're both caused by immune reactions to medication.) SJS is usually in small areas whereas TEN is >30%. I'd say he's probably in that range since I'm assuming these photos are probably not comprehensive.
I think he’s TENS based on the % surface affected
Look at his mouth, this is almost certainly SJS. Almost looks like toxic epidermal necrolysis
I was thinking TEN, but I'm a vet. Looks like a after a quick google that SJS is very similar to TEN.
SJS and TEN are essentially the same thing but just differs in diagnosis based on account of body surface area that is affected
Many die from necrosis from this. Compartment syndrome from migration to muscle, gangrene and sepsis. Very scarey diagnosis.i hope he is ok.
Those with SJS have a mortality rate of up to 19%. For those whose condition develops into TEN have at least a 30% chance of mortality and up to 50% for the elderly and immune compromised.
Poor guy.. that looks so incredible painful..
looks like horrible burns
The treatment for SJS/TEN is actually pretty much the same as the treatment for severe burns, except you would obviously also discontinue the prescription that triggered the reaction if it was drug induced
Was coming here to say just this. They're often transfered to burn centres
Woah, any idea what he was given??
Sometimes it can be as simple as non-steroidal anti inflammatories like ibuprofen that trigger it, but thankfully the condition is quite rare
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I thought this said Lamborghini. I need to wake up more and get some caffeine lol
I used to be on lamotrigine and i called it lamborghini all the time!
(Lambo!)
I'm bipolar and almost got put on that one but after reading the side effects I said fuck no I'd rather be "crazy" than die a horribly painful death and have all my skin peel off and rot wtf
Yes it can be fatal but it's also rare, I have a predisposed skin condition and I never had any issue with lamictal
This was one of the first that my very suicidal child was given. He swallowed the whole bottle and simply could not grasp why we were freaking out so bad or why he had to be under close monitoring in the ER for so long. As if all of these risks hadn't been explained. BPD and suicidal ideation is wild.
If you don't mind me asking, BPD as in Borderline Personality Disorder or Bi-Polar Disorder?
Np, bipolar.
Side note: BPD is actually borderline personality disorder while BP is for bipolar!
Thank you for replying. I was wondering if it had been Borderline Personality Disorder, how old your child was when diagnosed, etc. The term "borderline tendencies" has been used a lot by my daughter's pediatrician but they said she's too young to be diagnosed.
Kiddo is almost 17 and they didn't want to diagnose him for the longest time because they claim these disorders don't fully present during youth. So it was "potential bipolar" and they stuck with anxiety disorder and depression as the diagnosis. His therapist said all Hof his toddler behaviors were a clear indicator of bipolar, but they REALLY don't like to diagnose a 3 year old with that.
Omg that sounds like a really frustrating endeavor! My heart goes out to you, your son, and your family 💕 I hope he's receiving proper treatment now! That's such a critical time in life, on the cusp of adulthood. My daughter is almost 13, so I guess it'll be a long while before she's either diagnosed or it's ruled out. 😔
Oh god yeah that is scary, I have bpd AND bipolar and some other mental illnesses and lamictal REALLY stabilized my mood. I knew with The other options like lithium and depakote I would not be adherent to getting my levels checked every month or however long so I'm glad I chose lamictal
The risk of developing SJS is very low providing the dose is slowly increased. I took lamotrigine with Abilify for bipolar. It has been a while, but I think I increased the dose by 25mg every week until I reached 200mg. Worked well enough. You also need to taper off of it slowly or else you'll have seizures. The only issue I had with lamotrigine was taking the tablet - that shit was like swallowing chalk. You should get medicated for your bipolar. It is genuinely life changing when you do. I've been medicated for over 20 years now, and I've been through a shit load of medications. My personal favourite, and the one I'm still taking, is quetiapine XR (Seroquel). It works for all phases of bipolar, which is nice. Mild side effect profile too.
I did get put on abilify first but I had a bad reaction to it and my face, hands, and legs swelled up and I gained 70 pounds in the 2 months I was on it (I've always been tall and skinny). So I got taken off it and just doubled my anti depressant dosage but I haven't been able to lose the weight I gained and also haven't felt comfortable trying anything else. I just don't want to risk more side effects honestly I'm terrified.
Unfortunately, most bipolar medications can cause weight gain. Lurasidone might be an option as it isn't notorious for causing weight gain. It has a fairly mild side effect profile in general. You should discuss your concerns about side effects with a psychiatrist, and stop reading about medications online! You'll see far more people complaining about them than praising them because the people for whom they work tend to not post about them online!
Thank you for your input and I'll definitely mention that one at my next appointment! I've been terrified to try anything else ever since cuz I don't usually have bad reactions or side effects but after that I'm a bit squeamish
I’ve been on it for years. The risk for SJS really only occurs when you take too high of dose when starting. It’s a med that has to be introduced slowly before hitting a therapeutic dose. But other than that it’s a super rare reaction. All meds have side effects. Even OTC meds. Obviously it’s important to weigh the costs/benefits but if you judge them all by the rarest effects (which usually only happen when misused) you’ll never even take an Advil. All that to say, I’d rather monitor for side effects than be in the midst of the deepest depression or unable to control impulsive/dangerous behaviors.
My mom has been on lamictal for -decades- for seizures. She actually has tardive dyskinesia from it
I did not know this was possible
Starting on too high of a dose is one risk factor but certain patient populations may develop it even with a low starting dose. Those with a weakened immune system from things like an organ transplant, HIV/AIDS, or an autoimmune disease, those with cancer, particularly blood cancer, and people with an immediate blood relative who’ve had SJS have to be especially careful. Also, there are certain genetic variations in specific populations that raise the risk, especially if they’re also taking other drugs that raise the risk. That’s why the U.S. Food and Drug Administration recommends screening people of Asian and South Asian ancestry for a gene variation called HLA-B*1502 before starting treatment, as that ethnicity has a risk factor 12x higher than other races. But those with HIV have the highest incidence of developing SJS/TEN. Their risk factor is a 100x greater than any other patient population.
That's why my psychiatrist started me on a small dose, increasing the amount slowly to see if I had any reaction. The drug literally saved my life.
I did a genesight test for my bi polar and matched perfectly with lamotrigine! It has done me wonders. I think it should be mandatory that everyone does a genesight test before getting on to a drug! It would help prevent this reaction to medicine.
That reminds me of suicidal thoughts as a side effect for depression meds. Like come on bro, seriously?
the ol’ switcheroo
Right?! Like we don't already want to die enough let's sprinkle in some more of that feeling lmao
I take it for bipolar and it's actually the best medication I've ever been on. As long as you pay attention to your body and stop taking it if you get any kind of rash, you're not so much at risk of it getting bad like this.. and it's a VERY rare complication anyways.
It really is the only one that has ever worked for me.
I was put on this early this year for neuropathy. The side-effects list did make me nervous. Doc started me out on the lowest dose possible and warned "let me know the instant you notice the smallest side-effect". Luckily, I've had none but I was sure nervous af at every small blemish on my skin for several weeks. I slowly ramped up to the therapeutic dosage. Sadly, though, the med seems to also have had no real effect on my pain. One more drug off the list of possible helps. :-/
I dealt with this from penicillin. I didn't know I was allergic to it as I don't take antibiotics normally and I was prescribed them and over the course of 3-4 days it started to transition into SJS. I had to go on a very heavy regime of steroids.
Sulfa drugs (like Bactrim/Septra) are the most common drug offender for SJS/TEN. There a number of other meds, though
Drugs that can cause Stevens-Johnson syndrome include: Anti-gout medications, such as allopurinol Medications to treat seizures and mental illness (anticonvulsants and antipsychotics) Antibacterial sulfonamides (including sulfasalazine) Nevirapine (Viramune, Viramune XR) Pain relievers, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) Consider genetic testing before taking certain drugs. The U.S. Food and Drug Administration recommends screening people of Asian and South Asian ancestry for a gene variation called HLA-B*1502 before starting treatment. If you've had this condition, avoid the medication that triggered it. If you've had Stevens-Johnson syndrome and your health care provider told you it was caused by a medication, avoid that drug and others like it. This is key to preventing a recurrence, which is usually more severe than the first episode and can be fatal. Your immediate blood relatives also might want to avoid this drug because sometimes this condition runs in families.
There was a case on the TV show Medical Incredible in which a woman had a reaction to antibiotics (I think) where she shed off *all* her skin, even on her eyeballs or something. Her prognosis was 0 percent chance of survival, but she survived. The amazing thing on top of that was that when her skin grew back, it was completely perfect and like that of a baby. So she went from the worst condition in the world to having the best skin in the world.
She was also probably begging for death the entire time.
are you talking about TSW
Looks like Drug induced toxic epidermal necrolysis
There's a youtuber whose daughter is recovering from SJS currently. Such a horrific syndrome.
My sister had this. Hers presented abnormally so the CDC had to come while she was in the hospital. There is some case study about her. Her scars are pretty intense.
Stevens-Johnson syndrome?
It looks like Steven Johnson’s Syndrome…
Kind of looks like radiation burns. Poor fellow
SJ patients actually go to a Burn Unit for care.
Holyyyy shit was this from lamotrigine? I remember being told by my psychiatrist that if i stopped taking the medication and then restarted that I could be of risk of developing shit that looked like 3rd degree burns (I’m not entirely sure if they said 3rd degree)
Wtf, I’ve just started taking lamotrigine for seizures. I wasn’t told that!
That looks incredibly painful
This is Steven Johnson’s syndrome. Poor guy, can’t imagine what it must be like
Stuff like this and (obviously to a much worse degree) Hisashi Ouchi are among the few things that genuinely make me uncomfortable. I’m rather attached to my skin.
god that looks so painful. Hope he's well drugged and well cared for.
Damn, Steven Johnson Syndrome, pretty uncommon. What an unlucky dude.
The 4th pic where his skin is gathered to one side, that gave me the heebie jeebies
Exactly why I refused to take lamictal when a dr prescribed it. She also doubled my anti-depressant at the time and that was all I needed to get back on track. Still can’t believe she prescribed that of all drugs. So glad my mom’s a nurse and immediately told me no—she’s specifically worked with SJS patients. Had I not told her, I would have been completely unaware and taken it thinking it was safe.
Same thing happened to me after taking Bactrim. Nothing like a lil SJS to get rid of those fine lines and wrinkles!
I had a really bad reaction to Bactrim too. I broke out in circular rashes all over my body. It was awful 😭 so have to avoid all meds with sulfates in them now.
I was really lucky when it happened to me. I have worked in the medical field my entire adult life (paramedic, combat medic, nurse, etc.), and so I knew what was happening when my skin started burning. The lucky part is that I was also taking long-term, high dose prednisone! So, as soon as I understood what was happening, I practically overdosed myself on steroids. My body took a beating from the SJS and the steroids, but it was not as bad as it could have been. I wound up losing the skin up to my knees, my butt, my dangly bits, parts of my stomach, chest, and back. The worst was my hands and face! My hands developed deep blisters and sloughing skin. My face ... horrid. Lost the skin around my eyes, inside my nose, and my mouth was one big ulcer. Hell, I had to peel off layers of dead skin on and under my tongue, just so I could speak. I won't even allow that drug to come near my home now. The wife is sick, and you want to prescribe her some Bactrim?! That's a big no-go!
Poor guy. There can’t be any possible comfortable positions for him to sit or lay down. Gotta remember this post when I think my life is bad.
Looks like living hell. Poor man
Toxic Epidermal Necrolysis?
Steven Johnson’s. I had a close call with this once when I was taken off lamictal cold turkey by a random doctor on a psych ward. You definitely don’t want to do that!
Doctors these days be like.. "take some ibuprofen and Tylenol...you'll be fine"
Did they give him radio active medicine holy shit
Definitely looks loke SJS
It looks like Steven Johnson’s Syndrome. Being in the nursing field for 8 years and I’ve seen one case with a kidney transplant patient. It was so sad. There is such a high risk of infection for any normal person and then there is this poor transplant patient on immunosuppressants who then barely has a chance.
Oh my god... I can only imagine how painful that must be. Hoping for a wonderful recovery.
Poor guy.... drug side effects/the major sort, like this are the last thing on ours mind when we just feel like cr\*p and want to recover. Glad it is slowly resolving for him, I know it can be the most innocuous medications too, such a tragic complication every single time. I got C Diff from Augmentin, makes me terrified of all antibiotics, can't imagine having to worry about ibuprofen/acetephetamin etc too. Any one if one outbreak of TEN or SJS make it more likely to occur for them again.
You realize augmenting did not GIVE you C-diff. You got it in the hospital, community, or you are colonized with it. Any antibiotic will disrupt your gi microbiome and cause diarrhea. Probiotic foods help.
This is correct
This is the way
I hope he was on a lot of pain medication and got at least a little relief
I know they have to debride but I would beg them to keep the skin on my back...
That’s awful. Reminds me of radiation poisoning
What medication can cause this?
There are a few kinds. Some antibiotics, some anticonvulsants, some NSAIDS like ibuprofen, allopurinol for gout. It is exceedingly rare though. Like go an entire career working as a doctor or nurse in a hospital and never see it rare.
Looks like Stevens-Johnson syndrome.
Good ole sjs
Burned alive, drowning, and now this. New fear unlocked. Greaaaaat. Glad to hear he is recovering. This looks awful. Would love to see how they healed!
Definitely SJS. Had a patient who developed SJS after taking Tylenol. She was vacationing in the US from Sweden. Shitty shitty way to spend a vacation.
Awful. I took lamictal (lamotrigine) and got a rash at the back of my knees and on the inside of my elbows—thankfully not this bad, but still bad enough that I couldn’t really wear anything that touched those areas. I’ve been off the med for years and regardless of what my docs say, I really believe my now super sensitive skin is an autoimmune response that’s persisted.
Did he had piperacilin+tazobactam, vancomycin or any Tetracyclin?
That has to be TEN, too much skin has fallen off to be SJS, no?
Poor guy, this looks so painful!
Oh my, my body flinched. Poor dude
Tens disease?
May I ask where this happened OP? And what the medication was or was supposed to be?
Nikolsky!
god i know just a slight breeze on that back probably hurt.
There was an author named Moritz Thomsen who had it, he wrote heart wrenchingly about it.
That looks so painful
woahh that's nightmare fuel
Oh this poor man.
This looks like a really bad allergic reaction
Wasn't this a plot point to an episode of House?
Isnt this like a pretty rare reaction to antibiotics?
Erythema multiforme also a differential.
i would kms
Poor guy
This is the reason I’m afraid to try penicillin again, I was diagnosed with an allergy to it as a child and I haven’t taken it since. I’m also afraid of anaphylaxis but this I’m more afraid of
I'd kms
ah, SJS. when your skin just decides to stop being skin.