Hi. I'm in the USA. I had Stevens-Johnson Syndrome a little over 10 years ago as a response to sulfonamides and it's not listed as a prohibited illness under the red cross guidelines that I was presented with here in the US, but I found out that people in the UK are prohibited if they have had SJS, and some people in a support group on FB said that they were also advised not to donate? I know a lot of people with SJS end up receiving blood products though, so I dunno if they mean because of that or because of the SJS itself. I was fortunate enough that my immune system was very responsive to steroids and I was luckily able to recover before I got to a point of needing blood products.
I can't find an answer on Google or the Red Cross website. I have donated twice already not realizing that it might be a disqualifying condition, and I would donate again given the current blood crisis, but people who receive blood transfusion are often receiving a variety of meds I don't want to cause anyone else to have such a violent reaction.
Thanks in advance for any help!
Hello, I was searching about SJS and saw some posts from this sub. Thought you guys might be interested in it.
I am a 19 year old male who was diagnosed with SJS when I was about 9 months old. It was caused by Measles vaccine. The doctors couldn't figure out what it was in the beginning and gave me wrong treatment.
Almost all my body and skin was affected. I didn't die but had some severe damage to both of my eyes.
My eyes are dry, they are photophobic (high sensitivity to light) and I have low vision. My right eye has 65% and my left eye has 5% vision. I grew up in a blind hostel from age 6 to 12. I can read and write but need to keep it very close to my face. I always wear a cap when outside.
I also had extreme trouble gaining weight. I was 44lbs at 4th grade, about 54lbs in 5th and 97lbs at the age of 17. Since then I started working out and have gained some weight. I am at 130lbs at 5'8" right now. Gaining weight is hard.
I am not vaccinated other than what I was given at birth.
If you had any questions about someone who had it pretty bad, feel free to ask me!
Did anyone experience the SJS rash after starting Lamotrigine? What did it look like? I have a rash and made an appointment with a dermatologist but just want to get a sense of what others experienced. Thank you!
Ive been hospitalized for the last week because i just started taking Lamotigine and guess who drew the lucky SJS card. This guy. If you are starting or stopping new medication and you as so much as break out, which is how mine started, get medical help. I came in before it was too late and luckily mine isnt as severe as most, but this is the absolute worse pain ive ever felt. Its the equivelant of boiling water being poured over my body at all times. Even oxys and morphine dont take the pain away 100% . The worse part is, it's all in my mouth and I can't eat or drink properly. I didn't post this for pity, but as a warning that even though this is very rare, if you see early signs do not ignore them. Pay for that doctors visit to get it checked out. It will progress very quickly and is life threatening. God speed brothers and sisters.
Update: blisters got big and nasty, I just got all of the rash skin peeled off and I am beginning the healing stages. Even with morphine and oxys I felt every bit of it. Hopefully I'll get to go home in a few days.
Hi guys, i’m a steven johnson syndrome survivor, but i don’t think mine was medication induced. it’s happened to me about 5 times since i was 13, and right before it happens i have a bad cold and cough, and it always seems to happen during winter time. What do you guys think is the cause? if it’s my immune system do you think it’ll stop? also is this something that is gonna stay with me for life? because i’ve been so traumatised by it since i was a kid and have had to have psychological therapy countless times. i’m currently 18 now, and every time it gets to winter i get scared. i just want to be reassured that i’m not alone here, seeing as even the doctors are baffled as to what causes this. please reply to me i need help
I want to start lamotrigine but I am so anxious about stevens-johnson syndrome. In your experience how rare is sjs on lamotrigine - and how concerned should I be?
Hi all! I'm super new to exploring Ketamine as an option for me. I have quite a laundry list of medical conditions, but I do have one that I'd like to ask about. Stevens Johnson's Syndrome is something I've been living with for about 15 years now. I have severe "clinical" major depressive disorder, anxiety, and PTSD. I also suffer from an immune system disease (SJS being one of the symptoms) and Ketamine might be an option for a majority of my health concerns.
Does anyone have any information or personal experience on Ketamine and it's possibility of triggering SJS? I'm struggling to find solid information that I trust and finding anyone with SJS who I can discuss this with. (If you know anything about SJS then you know antidepressants and similar drugs can be extremely dangerous)
You all seem to be really open minded and willing to help so anything is extremely appreciated. I'm super scared to take this journey, and the more prepared and knowledgeable I am the better my results and response could be.
Thanks a ton everyone, I look forward to talking with you all!
Hey community,
We've had a lot of posts about SJS recently so myself and some of the other moderators decided to make a post with some information. I'm writing because I've actually had SJS - but not from lamictal! I was fine on lamictal, which makes sense because only 0.04% of patients on lamictal get SJS! It's pretty common to have some kind of skin issue (8.3%) but SJS is very very rare. (source - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5312199/#:~:text=Adverse%20skin%20reactions%20occur%20in,sulfamethoxazole%20with%20trimethoprim%20(0.003%25) )
SJS isn't really a "rash." It means layers of your skin are separating, kind of like a burn. It can become infected. It can also continue to spread even after you've stopped lamictal. That's why it's so important to seek medical attention for ANY rash that you have. Here is some information on what a more severe case looks like: https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936#:~:text=Stevens%2DJohnson%20syndrome%20(SJS),to%20heal%20after%20several%20days.
The good news is that if you see a problem and seek help you'll probably be just fine. It's a rare condition so the first person you talk to may not understand - if that is the case you need to follow up if it gets worse or does not get better.
About 6 years ago I took doxycycline, an antibiotic, to treat pneumonia. Both pneumonia and doxycycline can cause SJS so who knows what really happened. I already had a fever, sore throat, and fatigue from the illness but I developed swelling and a really weird rash with purple rings all of my legs and feet. I went to the ER and the doctors there had no idea what was wrong but gave me antihistamines and prednisone and pulled the antibiotic. I followed up with an allergist who then diagnosed SJS. It turns out steroids are a good treatment for SJS, so they didn't do anything differently, but the purple rings lasted for weeks and peeled. It was really weird, but I was fine. I can't take that antibiotic or related antibiotics.
A good friend of mine developed a small rash on her wrist while taking lamictal but did not stop the medication or seek help, thinking it was nothing. Overnight it developed into a super gross full body rash that caused her a lot of pain. She went to an urgent care clinic, stopped the lamictal, and started taking steroids. She had a really crappy time but she was fine. She may have had some peeling later but it was not peeling or bli
... keep reading on reddit ➡I have a bad habit to look up all side effects and reviews for drugs and reading about Steven Johnson Syndrome is making me a little worried . I cant really find an actual number of how many cases happen per x amount of people.
Hey! I had a relatively minor SJS reaction in May during the course of my chemo treatment (facial swelling/hives/burning eyes/blisters). My skin has healed, but I have noticed it is drier than normal especially on my cheeks. I have been using Alumier products for daytime including SPF, seabuckthorn oil at night, trying to drink plenty of water & I’ve been done chemo for over a month. Any suggestions for post SJS skin care products? :) TIA
u/johnballen416 if you want to do another drug reaction story, 2 years ago I had a severe and life-threatening drug reaction called Stevens-Johnson Syndrome. Even if you don't use my story, it is a VERY. VERY. GNARLY. THING. TO HAPPEN. 65% of my skin blistered up and slipped off of my body, and the same happened to a lot of my mucous membranes. Mucous membranes are present in the eyes, mouth, airways and lungs, digestive tract and genitalia, pretty much everything that makes being alive a good time. I needed cadaver skin grafts over my entire body. I went into respiratory failure and was on a ventilator for 6 days before being trached. It was really fucking insane and I spent 32 days in the JMS Burn ICU in Augusta GA, which is probably the best burn unit in the United States. Because I was young, in good condition and had excellent care, I pulled through and am lucky enough to be living a mostly normal life today! I got a really good attorney but apparently I did not have a case. 🙄
Take care, John, love the channel, and may the like button achieve its dreams of going up into space, only to burn up on re-entry!
Hi Docs, as stated in title I’m 161 cm, 88 kg, 28, ftm trans with no HRT, white, currently in Germany, and suffer primarily from bipolar 2 as well as some traits of PTSD and BPD. Haven’t used drugs or alcohol in 7 years, sterilized, smoke about 5 cigarettes a day, eat moderately healthy, exercise sometimes.
Current medications are: mornings - 450 mg of lithium carbonate, 175 mg of sertraline, 100 micrograms of Levothyroxine evenings - 675 mg of lithium carbonate, last measured concentration of lithium was 0.6mmol/l
I’ve been mentally ill and specifically depressed for most of my life and tried everything under the sun. Citalopram, Quetiapin, Doxepine, Venlafaxine, Promethazine, Lamotrigine, supplemental high dose 5-HTP, as well as a course of experimental rTMS.
The Lamotrigine triggered a bout of Stevens Johnson / TEN, put me in hospital for two months in incredible pain - couldn’t get pain killers due to background of addiction. The whole experience was extremely traumatic and makes me very apprehensive whenever I have to switch medication.
For about 6 months now all was well on a combination of Sertraline and Lithium, but my thyroid levels are abysmal, my last TSH was 37. My doctor has suggested switching the lithium to Topiramat, Aripiprazol or Valproate.
What should I do? Why can’t I just increase Levothyroxine and stay on the Lithium? Any input is welcome. Thanks in advance.
Hi, I hope this is the right sub to post on, if not please just disregard my post.
I’m 28, ftm, and I suffer from chronic and severe depression coupled with occasional light hypomania, as well as some traits of C-PTSD and BPD. I know it’s a mess of a diagnosis none of my doctors can get their shit straight. I’ve done just about all the talk therapy I can stand, CBT, DBT, meditation, I’ve tried rTMS in an experimental study and I’ve been through about a dozen psych meds. I’ve been clean and sober for 7 years now, I eat moderately healthy and I get some exercise.
Anyways, that’s the background here is the issue: about 6 years ago I was on venlafaxine 375 mg a day and I started to feel depression coming on again, so my doctor and I decided to add lamotrigine as a mood stabilizer. Got Stevens Johnson syndrome and spent 2 months in hospital. After that I switched to sertraline, 200 mg a day, and I was fine for 4 years. Then the sertraline started to give out or my depression got too strong, idk, so my doctor and I decided to add lithium, worked pretty well but now my thyroid levels are fucked (my last TSH was 39) possibly my kidneys as well and I don’t know which medication I can switch to that will not make my skin fall off.
Everyone talks about it on this sub and people freak out over the smallest hint of a rash. So how rare/common is it with modafinil? SJS seems rare to begin (in all of medicine as a whole) with but is it pretty common with moda?
Okay so I’m on Lamictal but with my psychiatrist tapering off and changing regimens for many reasons. Anyways I’m tapered to about 100mg from 200, going super slow. I tried to taper again recently by a tiny bit for two days, but I was under stress so I decided to wait and I went back up to 100 and have been there for a couple weeks.
Anyway today I feel very hot since I took Lamictal and feel like my mouth and throat are dry and sore. I also feel slight itches on my body.
There are hormonal reasons I could feel hot, or it could be Lamictal. Sometimes I feel this way after. But I keep getting worried because of people who got SJS from it said it was like being burned from the inside.
I also tend to have allergies which can explain the itching and dryness.
I know logically that I would have to have a RASH to be convened about SJS, right? Like, even if somehow this hotness was the beginning stages of it (I know it’s not) it wouldn’t be hospital worthy unless I break out in a rash, right?
I apologize for the paranoia but it would really help to have reassurance and someone else say it too. Sometimes health anxiety comes in the form of OCD intrusive thoughts like this (ironically this effect is exacerbated by Lamictal for me and one of several reasons I’m tapering.)
Thank you.
FWIW I’m also on a low dose Seroquel at night which I know can affect body heat but I don’t have an actual fever I just feel hot, and it doesn’t seem to start with Seroquel. I’m hoping it’s hormonal.
If you really think you have Steven-Johnson Syndrome AKA the rash that can appear with this medication. CALL YO DAMN DR.
It’s not something to ask the internet? If it’s a serious issue and you’re concerned go to the nearest hospital or call your dr at your earliest convenience.
It’s a serious condition. It’s literally a MEDICAL EMERGENCY. Ask a trained medical professional for crying out loud.
And for a little peace of mind — only 0.04% of people taking lamictal get SJS. 1 in 2500 people. There’s not even 2000 people on this group.
I started taking 25 mg of Lamictal about 2 weeks ago and I am having absolutely every symptom you could think of. Back pain, muscle soreness, sore throat, restless legs, heart palpitations, brain fog, memory issues, swollen lymph nodes, mania, irritableness, twitching, anxiety, sleeping problems, chest/lung pain, back pain and I’m extremely confrontational now. At first it made me extremely manic for a few days and then it leveled out. I’m scared, and I don’t have an appointment with my psych until the end of the month.
I’m horrified by all the stories and I know it’s extremely rare but I also have extreme general anxiety and medical anxiety. I’m mostly terrified right now because I have what I thought was a pimple on the side of my head, but it looks very bright red and it’s painful to touch. I have extremely dry skin and multiple skin disorders as well as a family history of thyroid issues. I’m worried because as a kid I was allergic to sulfas and keflax drugs.
I told this information to my psych but he still prescribed it. At the time I didn’t know anything about this drug. I’m so scared that all these symptoms are developing into SJS.
I am editing this to add that: I’m currently experiencing intense chills and cold, This does not help me feel better at all.
I know people like to hear about the rarer medical problems here, so I’d like to share my story of Stevens-Johnson Syndrome.
https://imgur.com/gallery/wdDaiS5
Supposedly caused by a faulty gene, it only affects 1-2 in every million.
Happy to answer any questions here.
I'm a 24F, 5'5", and... somewhere between 160-180lbs? (In a remote location for work and have been losing weight without access to a scale). I am also Latina. This is more of myself just being curious, as I'm finally feeling comfortable with my body and noticed the sheer amount of stretch marks on my body. I have stretch marks over the majority of my body. I think the ONLY spots I don't have some stretch mark are my hands, feet, and upper back. Everywhere else has some level of marks. They are mostly faint and fine, at least with me being sun deprived at the moment, but they are everywhere. There are places (like my arms and thighs) that have hundreds of tiny marks ranging from a few mm to a few cm. They also extend around most of my joints, to the point that my father had to question me when I was a teenager because it looked like I had raked my shoulders with knives or something (or what the scars would look like after). I've had them since I hit puberty. I didn't gain a lot of weight during puberty (I was probably around 145-150lbs), but they all started showing up then. My skin has always scarred very easily, and this doesn't happen to my other family members. I don't think my mom had these levels of stomach marks until after children. The only thing I can think of is that I had a severe, ER level allergy attack to Sulfa. For those that aren't aware of this allergy (Stevens-Johnson Syndrome specifically), I was in the ER with all of my mucus membranes sluffing off, admitted as a burn patient. I was super tiny at the time, but my mom said that she got written up for child abuse because the nurse thought that the only possible was I could have ended up like that, was if I had been boiled alive. I know that this is completely a "correlation is not causation" issue, but was wondering if anybody had heard of delicate skin after a reaction like mine?
Has anyone else on here had Stevens-Johnson Syndrome? It’s so rare that I feel kind of alone when it comes to my anxiety regarding any medication at all.
Hello everyone, pleased to meet you.
In June 2018 I found out the hard way I have a very rare condition called Stevens-Johnson Syndrome (SJS).
For anyone curious about the condition, or for any fellow survivors who have questions, ask away.
as stated in title I’m 161 cm, 88 kg, 28, ftm trans with no HRT, white, currently in Germany, and suffer primarily from bipolar 2 as well as some traits of PTSD and BPD. Haven’t used drugs or alcohol in 7 years, sterilized, smoke about 5 cigarettes a day, eat moderately healthy, exercise sometimes. Current medications are: mornings - 450 mg of lithium carbonate, 175 mg of sertraline, 100 micrograms of Levothyroxine evenings - 675 mg of lithium carbonate, last measured concentration of lithium was 0.6mmol/l I’ve been mentally ill and specifically depressed for most of my life and tried everything under the sun. Citalopram, Quetiapin, Doxepine, Venlafaxine, Promethazine, Lamotrigine, supplemental high dose 5-HTP, as well as a course of experimental rTMS. The Lamotrigine triggered a bout of Stevens Johnson / TEN, put me in hospital for two months in incredible pain - couldn’t get pain killers due to background of addiction. The whole experience was extremely traumatic and makes me very apprehensive whenever I have to switch medication. For about 6 months now all was well on a combination of Sertraline and Lithium, but (edit: due to the lithium) my thyroid levels are abysmal, my last TSH was 37. My doctor has suggested switching the lithium to Topiramat, Aripiprazol or Valproate. What should I do? Why can’t I just increase Levothyroxine and stay on the Lithium? Any input is welcome. Thanks in advance.
Hi, I hope this is the right sub to post on, if not please just disregard my post.
I’m 28, ftm, and I suffer from chronic and severe depression coupled with occasional light hypomania, as well as some traits of C-PTSD and BPD. I know it’s a mess of a diagnosis none of my doctors can get their shit straight. I’ve done just about all the talk therapy I can stand, CBT, DBT, meditation, I’ve tried rTMS in an experimental study and I’ve been through about a dozen psych meds. I’ve been clean and sober for 7 years now, I eat moderately healthy and I get some exercise.
Anyways, that’s the background here is the issue: about 6 years ago I was on venlafaxine 375 mg a day and I started to feel depression coming on again, so my doctor and I decided to add lamotrigine as a mood stabilizer. Got Stevens Johnson syndrome and spent 2 months in hospital. After that I switched to sertraline, 200 mg a day, and I was fine for 4 years. Then the sertraline started to give out or my depression got too strong, idk, so my doctor and I decided to add lithium, worked pretty well but now my thyroid levels are fucked (my last TSH was 39) possibly my kidneys as well and I don’t know which medication I can switch to that will not make my skin fall off.
TL;DR: I don’t want to get Stevens Johnson Syndrome again, but I also want to stay somewhat sane. What do I do?
