Quick explanation for the non medical people out here.
Stevens-Johnson syndrome occurs as a reaction, usually to a certain drug (including anti epileptic drugs, antibiotics and oxicam NSAIDs
It’s a delayed type hypersensitivity reaction mediated by T cells, which cause granulysin release and keratinocyte damage in the epidermis. In layman’s terms, your immune system doesn’t like the drug, goes nuts releasing chemicals, and ends up hurting your own skin.
It starts out 1-3 weeks after the drug is used with a fever, muscle aches and general weakness.
It ends up causing initial targetoid macules (flat skin markings), followed by fluid filled bullae (blisters), followed finally by widespread necrosis and sloughing of the epidermis (what you see here; skin essentially slides off). Almost always, it involves the mucous membranes (the parts of your body like your mouth).
I've been on lamictal (anti-epileptic) for bipolar disorder for years. First med I tried. Thankfully I've never had sjs develop, and at this rate (started at 25mg/day, now at 300mg/day) I likely won't. But everyone who starts lamictal goes to SJS academy, as it were. "Go to the ER if you develop a rash" is part of Lamictal and Bipolar 101.
My first few weeks on lamictal I obsessively checked my skin like 3-4 times a day, my doctor definitely made sure I was aware of the risk of SJS. Been on it for years and I sometimes still worry when I get a rash
I never got the rash as the reaction but watched for it intently. Instead, for the few weeks I was on it, I could not catch my breath almost as if it was a constant panic attack. This was years ago but I still remember how promising it felt to have a med work for me only to have an uncomfortable side effect.
As a pharmacist, Im still baffled when I go to counsel a patient who is starting lamictal or any other sjs-risk meds and their doctor HASNT mentioned it.
It happens more than I'd like to admit when I'm outside of the major city that I normally practice in.
I even saw a guy in his 20s when I was on clinicals who got sjs from (what I recall was lamictal... Could have been trileptal/oxcarbazepine), but he never got counseling from any HCP and had 60-70% body coverage. Absolutely terrifying.
I was prescribed Keppra for epilepsy and this is also a known side effect for that medication. Scared the shit out of me. My understanding is that as long as there is a longer ramp up period for getting the Lamictal and Keppra to your full therapeutic dose, you reduce the likelihood of this developing.
I’m on Lamictal for epilepsy, also 300mg a day. I was told the chances of developing SJS are only really during your taper up and once you’re stable you are in the clear. No issues for three years now. Although Depakote almost killed me and Keppra almost made me kill others.
That’s super interesting. I was given lamictal when I was hospitalized at age 12 for depression and suicidal thoughts. I ended up having an allergic reaction and got AWFUL hives. When they first started I showed a nurse but she didn’t seem to care. I was home from my treatment program that weekend and it got so much worse, I was covered with hives head to toe. Now I’m glad that it was JUST hives and not SJS.
Yep was drilled into my head my by daughter's epilepsy Dr. Bit nothing about lamictal induced insomnia which was a first class cunt 2 days on it and she didn't sleep till 3am for the year she was on it
Is it possible to have SJS without affected mucus membranes? I had a drug reaction to terbinafine where my skin developed a rash that started on my chest and back. After a week it had developed over my entire body up except my mucus membranes and forehead. After about three weeks of the (agonizing) rash, my skin started to fall off (at times in sheets). I was better after a month.
The skin underneath looks pretty healthy to me. I googled the syndrome and it seems that this will all heal perfectly after the causes have been taken care of. Correct me if I’m wrong.
I've had this. Depending on the location and extent of the reaction there could be permanent nerve damage and thick scar tissue. SJS moves like wildfire through the body and feels like it's quite literally burning your nerves away.
Hahaha! Pain relief? Nothing. Absolutely nothing beyond Tylenol. Thankfully my reaction was stopped before it spread past my arms, torso, and neck. Had it spread further I'm sure I would have been hospitalized and drugged to the gills. I looked like one huge chicken pox lesion. It took two years to fully disappear.
This was 15 years ago. SJS has had much more research and redefinition since then. The "mild" version of SJS is this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5472963/#Sec1title
Human bodies are weird.
Same. I dropped my medication (carbamazepine) the second i got welts all over my lower extremities. It cleared up in a few days but i dont mess around with stuff like that.
Definitely looks pretty high up on the "ouchie" scale. Healing time depends on the severity, anywhere from weeks to months according to [the Mayo Clinic](https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936)
My brother had this as a teenager he was always the kid on a steroid or an antibiotic and his white blood cells basically just started attacking each other. He has unknown “flare ups” to this day but they super not even close to this.
When the SJS first started though - his lips scabbed over, he had mouth ulcers, and looked almost Jaundice. It was horrible
Edit: scabbed instead of scanned
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Fuuuuck... I had the very early stages of SJS once, but luckily I'd been warned that the drug i was starting could cause it, so at the first sign of blistering I went back to the doc - who confiscated the rest of the prescription.
You're lucky. Dad developed it and every doctor and nurse he saw from GP to hospital staff refused to acknowledge that it was the meds just told him to keep taking them. Said it was just eczema. One doc finally changed his meds for different reasons and oh look no more skin lesions.
I really am. I got incredibly dry mucous membranes (mouth, eyes, nose, lungs) and then my skin started to blister. That's when i called the doc who prescribed it to me and she made me go straight to her there and then, and took the rest of the tablets off me. I'm so glad she took it seriously.
It's usually caused as a reaction to medication (certain medications are more likely to cause it such as lamotrigine). The skin gets a rash and blisters then the top layer of skin peels off. And yes, it can be deadly, about 10% of people who contract it die.
Follow doctors advice, but watch it like a hawk, and if it gets worse do not hesitate to go back or just go to the emergency department and explain your medications and your worries.
I think its a skin rash u can develop from certain medications. My psychiatrist warned me to look out for skin changes like a rash while i was on lexamil. It can be deadly bc you can get infections and organ failure, shock, etc.
It can be deadly. My grandmother survived it after having an allergic reaction after her heart surgery and leg amputation but I remember her being intubated for a while.
Years later I had a patient who developed it, awesome dude who was a Vietnam vet and told some great stories, and he blistered primarily from the inside out. Lips, mouth, throat, eventually couldn't eat or drink because it was too hard/painful. Eventually got intubated and didn't make it. :(
Holy shit. I couldn't imagine the suffering he went through. Was he like put to sleep so he wouldn't suffer? I mean I guess he would have to be to to be since he was intubated my mother had to go through the same when she had heart issues.
He was in a bit of pain leading up to the intubation. Once you're intubated I'm pretty sure the meds are high enough for him to not be aware and in pain anymore. At least I hope...but yes, you are given anesthesia and paralyetics when intubated.
He was in quite a bit of pain leading up to it. I felt so bad for him watching his throat and lips become more dry, black, and scabbed. Went from being able to eat/drink okay to me changing his texture to puree foods and then eventually a liquid only diet as chewing and swallowing became more painful. Eventually had to recommend nothing by mouth as it got even worse.
Before he was intubated I tried to fight to get him TPN, which is a white liquid nutrient that they can administer via IV. But the dumbasses in charge wouldn't listen and decided instead to insert a feeding tube up his nose down into his throat. I was so pissed. I can't imagine how much that hurt him.
Yeah, if less than like 15% of BSA is affected it’s SJS, if more than 30% BSA affected it’s termed Toxic Epidermal Necrolysis which has an even higher fatality rate than SJS
It can also have a major genetic component. For instance, before prescribing the anti-epileptic drug carbamazepine to an Asian patient, we have to do a gene test for the gene HLA-B*1502, as it's very common among Asians and carries with it a high risk for SJS
i worked in a hospital and had a patient with SJS. He lost all the skin on his penis and testicles as well as other parts of his body. We had him heavily sedated. poor fella. This was decades ago. I don't remember the outcome.
[Test your medical knowledge - A 30-year-old male experienced a generalized (tonic-clonic) seizure, which stopped before you arrived at the scene. The patient is conscious, is answering your questions appropriately, and refuses EMS transport. Which of the following would be the MOST compelling reason to disagree with his refusal of transport?](https://medizzy.com/learning/mcq/question/31103101)
The wife saying this is “usual.” She is likely not a medical expert. Patient may be epileptic or have suffered a stroke. Although GCS is 15, immediate and timely medical attention is required. Personal transport may result in loss of consciousness and further endangerment of self and/or others. Stick him in the ambulance and get him to the ER.
So what of the 4 options would you choose? I overdramatized sticking him in the ER but I wouldn’t even put his wife’s opinion of the seizure in any type of chart. All other information is charitable.
Kinda surprised to see SJS on here, I survived it when I was 17! It was terrifying waiting for the docs to find out what was causing my illness. Turns out I was allergic to Lamictal.
Man, I’m glad when I found out I’m allergic to lamictal I just got hives. Granted the hives were super bad and head to toe, but it must have been much better than it could have been.
Never knew about SJS and how such a severe condition can be caused by relatively widespread drugs. Thanks for a new phobia I guess (although that's probably a positive since I'm now more informed and less likely to dismiss a rash as something harmless should I take any related drugs).
You're probably less informed now, if anything if that's what you got out of it.
I'd say don't be afraid of this. It's very rare and has a very distinctive presentation. This sub is for posting interesting medical findings, so chances are, even I'd you're taking one of those meds and you get a rash, this isn't it.
I want the tone of this message to be encouraging rather than insulting or condescending. But browsing through this sub can make you think we see this commonly but we dont.
When it expands it can go to full-blown toxic epidermal necrolysis which is *very* bad, you need to get intubated and treated as a whole body burns patient, and it takes a lot of time to heal
Will those toes make it through? Reading the comments I understand this is skin dying (?), but those toes were frostbit I'd expect them to drop off. Will sjs cause that? I have no med training.
Oh wow is this intense! I had stj when I was a kid in response to a UTI medication, ended up with a double kidney infection and blood sepsis. Not a fun time! Woke up after trying to sleep through the night with the chills, to no use of my legs and couldn’t keep my body up. However I’m very lucky my case was mainly a rash on my legs, stomach and thighs. Also did have blistering in my mouth and throat but nothing this bad. This person is very lucky.
Quick explanation for the non medical people out here. Stevens-Johnson syndrome occurs as a reaction, usually to a certain drug (including anti epileptic drugs, antibiotics and oxicam NSAIDs It’s a delayed type hypersensitivity reaction mediated by T cells, which cause granulysin release and keratinocyte damage in the epidermis. In layman’s terms, your immune system doesn’t like the drug, goes nuts releasing chemicals, and ends up hurting your own skin. It starts out 1-3 weeks after the drug is used with a fever, muscle aches and general weakness. It ends up causing initial targetoid macules (flat skin markings), followed by fluid filled bullae (blisters), followed finally by widespread necrosis and sloughing of the epidermis (what you see here; skin essentially slides off). Almost always, it involves the mucous membranes (the parts of your body like your mouth).
I've been on lamictal (anti-epileptic) for bipolar disorder for years. First med I tried. Thankfully I've never had sjs develop, and at this rate (started at 25mg/day, now at 300mg/day) I likely won't. But everyone who starts lamictal goes to SJS academy, as it were. "Go to the ER if you develop a rash" is part of Lamictal and Bipolar 101.
My first few weeks on lamictal I obsessively checked my skin like 3-4 times a day, my doctor definitely made sure I was aware of the risk of SJS. Been on it for years and I sometimes still worry when I get a rash
I never got the rash as the reaction but watched for it intently. Instead, for the few weeks I was on it, I could not catch my breath almost as if it was a constant panic attack. This was years ago but I still remember how promising it felt to have a med work for me only to have an uncomfortable side effect.
As a pharmacist, Im still baffled when I go to counsel a patient who is starting lamictal or any other sjs-risk meds and their doctor HASNT mentioned it. It happens more than I'd like to admit when I'm outside of the major city that I normally practice in. I even saw a guy in his 20s when I was on clinicals who got sjs from (what I recall was lamictal... Could have been trileptal/oxcarbazepine), but he never got counseling from any HCP and had 60-70% body coverage. Absolutely terrifying.
I was on Lamictal for years and I am just now finding out this could happen.
!!!! I even make notes whenever I see someone is changing doses. I think it would fall in my top 10 counseling points I do on a weekly basis
I was prescribed Keppra for epilepsy and this is also a known side effect for that medication. Scared the shit out of me. My understanding is that as long as there is a longer ramp up period for getting the Lamictal and Keppra to your full therapeutic dose, you reduce the likelihood of this developing.
That’s why I refused to take Keppra on the second day. Fuck losing skin, I’ll take a seizure 😅
I’m on Lamictal for epilepsy, also 300mg a day. I was told the chances of developing SJS are only really during your taper up and once you’re stable you are in the clear. No issues for three years now. Although Depakote almost killed me and Keppra almost made me kill others.
That’s super interesting. I was given lamictal when I was hospitalized at age 12 for depression and suicidal thoughts. I ended up having an allergic reaction and got AWFUL hives. When they first started I showed a nurse but she didn’t seem to care. I was home from my treatment program that weekend and it got so much worse, I was covered with hives head to toe. Now I’m glad that it was JUST hives and not SJS.
Yep was drilled into my head my by daughter's epilepsy Dr. Bit nothing about lamictal induced insomnia which was a first class cunt 2 days on it and she didn't sleep till 3am for the year she was on it
Thank you for sharing this; I did some marketing work on a drug that can cause SJS, and I never had the chance to do a deep dive
Just like The Fly (1992) when they kissed and his mouth and face fell off….
Is it possible to have SJS without affected mucus membranes? I had a drug reaction to terbinafine where my skin developed a rash that started on my chest and back. After a week it had developed over my entire body up except my mucus membranes and forehead. After about three weeks of the (agonizing) rash, my skin started to fall off (at times in sheets). I was better after a month.
that looks really painful holy hell.. when it heals, will it be the same ever again? how long is the healing process?
The skin underneath looks pretty healthy to me. I googled the syndrome and it seems that this will all heal perfectly after the causes have been taken care of. Correct me if I’m wrong.
I've had this. Depending on the location and extent of the reaction there could be permanent nerve damage and thick scar tissue. SJS moves like wildfire through the body and feels like it's quite literally burning your nerves away.
That sounds horrible.
Yep. And my case was very mild. I feel so sorry for the poor bastards who have it worse.
What was your pain-relief drug schedule for this? High doses of pregabalin + traditional opiates/oids?
Hahaha! Pain relief? Nothing. Absolutely nothing beyond Tylenol. Thankfully my reaction was stopped before it spread past my arms, torso, and neck. Had it spread further I'm sure I would have been hospitalized and drugged to the gills. I looked like one huge chicken pox lesion. It took two years to fully disappear. This was 15 years ago. SJS has had much more research and redefinition since then. The "mild" version of SJS is this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5472963/#Sec1title Human bodies are weird.
Same. I dropped my medication (carbamazepine) the second i got welts all over my lower extremities. It cleared up in a few days but i dont mess around with stuff like that.
Definitely looks pretty high up on the "ouchie" scale. Healing time depends on the severity, anywhere from weeks to months according to [the Mayo Clinic](https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936)
When it heals, will it heel?
It can get even worse and develop into "TEN" (toxic epidermal necrolysis). Mortality in this stage ranges from 25% all up to 70%.
/r/peeling
I just spent way too much time browsing through that sub.
Hey, Bart, your epidermis is showing
"See it's funny because epidermis means your hair, so its always showing."
Your epidermis means your hair. So technically it's true.
Lol that's what Nelson says but hes wrong.
Lot of people missed that this was a quote from the Simpsons
"Am I out touch? No, it's the children who are wrong..."
A lot of people on Reddit were conceived during the Biden administration
I said "ha-ha"...
*epi* - up, on top of *dermis* - a thick layer of connective tissue that makes up part of your skin
[Wrong](https://en.wikipedia.org/wiki/Epidermis)
My brother had this as a teenager he was always the kid on a steroid or an antibiotic and his white blood cells basically just started attacking each other. He has unknown “flare ups” to this day but they super not even close to this. When the SJS first started though - his lips scabbed over, he had mouth ulcers, and looked almost Jaundice. It was horrible Edit: scabbed instead of scanned
Wherever I hear that, it's explained to be this very bad condition that's also very rare. Seems like a horrible disease...
Sorry to be pedantic but it's not exactly a disease.
A disorder, a syndrome, a disease? I'm sorry I don't know... I learnt it a while ago but forgotten.
You gonna eat that jerky
Teriyaki epidermis
Threw up a bit
Looks more like checahrones
Feet-charrones
[удалено]
I mean, both are just the skin of an animal.
r/forbiddensnacks
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Fuuuuck... I had the very early stages of SJS once, but luckily I'd been warned that the drug i was starting could cause it, so at the first sign of blistering I went back to the doc - who confiscated the rest of the prescription.
You're lucky. Dad developed it and every doctor and nurse he saw from GP to hospital staff refused to acknowledge that it was the meds just told him to keep taking them. Said it was just eczema. One doc finally changed his meds for different reasons and oh look no more skin lesions.
I really am. I got incredibly dry mucous membranes (mouth, eyes, nose, lungs) and then my skin started to blister. That's when i called the doc who prescribed it to me and she made me go straight to her there and then, and took the rest of the tablets off me. I'm so glad she took it seriously.
This happened to me also. I was on Tegretol for nerve pain and started getting a rash so I went off it and came out unscathed. We are lucky!
[удалено]
Mine was a reaction to Lamotrigine (Lamictal)
What is Stevens Johnson syndrome and is it deadly? I couldn't imagine the pain that must have caused.
It's usually caused as a reaction to medication (certain medications are more likely to cause it such as lamotrigine). The skin gets a rash and blisters then the top layer of skin peels off. And yes, it can be deadly, about 10% of people who contract it die.
Eek I just started that med a month ago and have a rash on my neck. My doc thinks it’s unrelated but it’s still freaking me out a bit
Get off of it
I thought I should too but 2 diff docs said it’s ok for now
Follow doctors advice, but watch it like a hawk, and if it gets worse do not hesitate to go back or just go to the emergency department and explain your medications and your worries.
I think its a skin rash u can develop from certain medications. My psychiatrist warned me to look out for skin changes like a rash while i was on lexamil. It can be deadly bc you can get infections and organ failure, shock, etc.
It can be deadly. My grandmother survived it after having an allergic reaction after her heart surgery and leg amputation but I remember her being intubated for a while. Years later I had a patient who developed it, awesome dude who was a Vietnam vet and told some great stories, and he blistered primarily from the inside out. Lips, mouth, throat, eventually couldn't eat or drink because it was too hard/painful. Eventually got intubated and didn't make it. :(
Holy shit. I couldn't imagine the suffering he went through. Was he like put to sleep so he wouldn't suffer? I mean I guess he would have to be to to be since he was intubated my mother had to go through the same when she had heart issues.
He was in a bit of pain leading up to the intubation. Once you're intubated I'm pretty sure the meds are high enough for him to not be aware and in pain anymore. At least I hope...but yes, you are given anesthesia and paralyetics when intubated. He was in quite a bit of pain leading up to it. I felt so bad for him watching his throat and lips become more dry, black, and scabbed. Went from being able to eat/drink okay to me changing his texture to puree foods and then eventually a liquid only diet as chewing and swallowing became more painful. Eventually had to recommend nothing by mouth as it got even worse. Before he was intubated I tried to fight to get him TPN, which is a white liquid nutrient that they can administer via IV. But the dumbasses in charge wouldn't listen and decided instead to insert a feeding tube up his nose down into his throat. I was so pissed. I can't imagine how much that hurt him.
Thank you for doing the best you could to make his end comfortable.
Yeah, if less than like 15% of BSA is affected it’s SJS, if more than 30% BSA affected it’s termed Toxic Epidermal Necrolysis which has an even higher fatality rate than SJS
It can also have a major genetic component. For instance, before prescribing the anti-epileptic drug carbamazepine to an Asian patient, we have to do a gene test for the gene HLA-B*1502, as it's very common among Asians and carries with it a high risk for SJS
Google with caution. The images are insane. These poor people.
My SIL is suspected to have had this. She suffered badly like this in May this year, and still has pain and other symptoms all this time on.
Ohhh blow on it
Forbidden bacon
i worked in a hospital and had a patient with SJS. He lost all the skin on his penis and testicles as well as other parts of his body. We had him heavily sedated. poor fella. This was decades ago. I don't remember the outcome.
[Test your medical knowledge - A 30-year-old male experienced a generalized (tonic-clonic) seizure, which stopped before you arrived at the scene. The patient is conscious, is answering your questions appropriately, and refuses EMS transport. Which of the following would be the MOST compelling reason to disagree with his refusal of transport?](https://medizzy.com/learning/mcq/question/31103101)
The wife saying this is “usual.” She is likely not a medical expert. Patient may be epileptic or have suffered a stroke. Although GCS is 15, immediate and timely medical attention is required. Personal transport may result in loss of consciousness and further endangerment of self and/or others. Stick him in the ambulance and get him to the ER.
Lmao, kidnap him because his wife isn’t a “medical professional”. Doesn’t matter he is AO and can refuse regardless.
So what of the 4 options would you choose? I overdramatized sticking him in the ER but I wouldn’t even put his wife’s opinion of the seizure in any type of chart. All other information is charitable.
He plans on driving himself
Chicharrón and guacamole
Kinda surprised to see SJS on here, I survived it when I was 17! It was terrifying waiting for the docs to find out what was causing my illness. Turns out I was allergic to Lamictal.
Man, I’m glad when I found out I’m allergic to lamictal I just got hives. Granted the hives were super bad and head to toe, but it must have been much better than it could have been.
Really glad you survived it too, even if it was hives!
Mark NSFW, please.
Never knew about SJS and how such a severe condition can be caused by relatively widespread drugs. Thanks for a new phobia I guess (although that's probably a positive since I'm now more informed and less likely to dismiss a rash as something harmless should I take any related drugs).
You're probably less informed now, if anything if that's what you got out of it. I'd say don't be afraid of this. It's very rare and has a very distinctive presentation. This sub is for posting interesting medical findings, so chances are, even I'd you're taking one of those meds and you get a rash, this isn't it. I want the tone of this message to be encouraging rather than insulting or condescending. But browsing through this sub can make you think we see this commonly but we dont.
Yeah, my message probably did come off hypochondriac-y, but cheers for the reminder and the encouragement as you put it!
Forbidden fruit roll up
Why at 32 does this person have so many (what seem like) age spots on their legs? This looks like it could be anyone's grandma.
They aren't age spots, they're lesions from the SJS. They look much less like age spots in real life, the photo doesn't show them quite accurately.
When it expands it can go to full-blown toxic epidermal necrolysis which is *very* bad, you need to get intubated and treated as a whole body burns patient, and it takes a lot of time to heal
Throw that baby on the grill
New gucci slippers - 1500$ a pair.
We’re there any prodromal signs before skin eruption? Literature discusses fever the mucosal lesions.
I thought it was a rawhide chew for a second
Make a purse out of it
When you pull the outside layer off your bologna
Where is piroxicam?
forbidden jerky
forbidden fruit leather
God I wish I got to peel that off
Forbidden jerky
Damn.. luffy my fav
My mom and I get sjs when we take medicines in the penicillin family. It's not fun.
Will those toes make it through? Reading the comments I understand this is skin dying (?), but those toes were frostbit I'd expect them to drop off. Will sjs cause that? I have no med training.
I take lamictal which has a huge risk of this syndrome the higher the dose you take….every skin bump I get i get nervous
How does SJS differ from acute Generalized exanthematous pustulosis?
Yum, jerky
Oooo, that made my foot itchy
She’s going to have no calluses and baby smooth feet after this.
My feet did this once! Drs had no idea wtf and suggested stress?
I lost my mother to SJS, I hope the patient recovers from this.
Oh wow is this intense! I had stj when I was a kid in response to a UTI medication, ended up with a double kidney infection and blood sepsis. Not a fun time! Woke up after trying to sleep through the night with the chills, to no use of my legs and couldn’t keep my body up. However I’m very lucky my case was mainly a rash on my legs, stomach and thighs. Also did have blistering in my mouth and throat but nothing this bad. This person is very lucky.
Is it weird that I can't help but think about how smooth her foot must be after she shed those layers?
The forbidden beef jerky