Stevens-Johnson Syndrome

Join the Conversation on
Stevens-Johnson Syndrome
185 people
0 stories
27 posts
  • About Stevens-Johnson Syndrome
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Stevens-Johnson Syndrome
    Brian Fu
    Brian Fu @brian-fu

    My Experience With Serious Side Effects to New Psychiatric Medication

    Recently, I wrote an article titled “This Serious Side Effect Makes Me Scared About My New Psychiatric Medication.” It was about a medication that had a very low chance of causing me to develop Stevens-Johnson syndrome , a skin disease that is very serious and can be fatal in some cases. The chances were incredibly low. However, they increased as I was on another medication with the same possibility of developing the disease. The two mixed together didn’t make a great combination, but I took them because my doctor told me it would help. And honestly, they did help stabilize my mood and did make me feel better. The first sign of Stevens-Johnson syndrome is the development of flu-like symptoms. I didn’t develop the normal flu symptoms, at least not at first. But one day, I did wake up feeling sick. I had a cup of coffee, as usual, and immediately became nauseous. I went to the bathroom, where I regurgitated what I thought was all the coffee I had drank. At that point, I figured I would go to the store close to my apartment to pick up a thermometer and some headache medicine (I also had a headache for several days.) However, there was something else that I didn’t even consciously think about before I left. For the past couple of days, I noticed that I wasn’t able to walk correctly around my apartment. I would stumble around and have to lean against the wall for support. For some reason, this didn’t register in my head as a problem, even when I took an umbrella with me to the store so I wouldn’t fall. As I was walking up to the store, I felt an immediate wave of nausea hit me, and knew walking into the store was not a good idea. I sat on the curb outside and took a bunch of deep breaths to try to control it. But it wasn’t going to happen. I ran over to the closest garbage can and vomited several times. With the current coronavirus (COVID-19) pandemic, I was expecting bystanders to not even get close to me. But, in fact, several people did. Someone brought me a cup of water, and someone offered to walk me to the nearest immediate care facility. I told them I would be fine and just needed to get home. That’s not what happened. After another round of stumbling to the garbage can, the woman who offered to walk me over to the care facility came back and said she had walked to the fire station across the street, and that some medics were on the way. Four medics showed up, and recommended I just go to the immediate care facility, since going to the hospital probably wasn’t a good idea. As they were saying that, I had to stand up, rather unstably, and run to the trash can. I sat back down, looked at all of them, clearly very sick, and they said the words I didn’t want to hear: “we’re calling you an ambulance.” After that trip, I was brought to a close hospital, where they gave me a round of medications, an IV and other things to help me calm down. After stabilizing me, the nurses told m I was free to leave, but that they highly recommended I be transferred to another, larger hospital for observation overnight. Throughout this whole process, I was scared my worst nightmare was coming true: I was developing Stevens-Johnson syndrome . Once I was transported, I saw many, many doctors to treat me. They told me that I was not developing the disease, which greatly relieved me. However, they said I wasn’t out of the woods. Throughout the whole process, I had to be moved around on gurneys because I simply was unable to walk without a great deal of help. I saw a neurologist, who said I had developed ataxia , which leads to difficulty with walking and standing, among other things. He said I needed to immediately stop taking the medication and let it get it out of my system. I spent the night there, reassured I was not developing a very serious, potentially fatal illness. However, my nightmare of serious side effects came true that night. Not being able to walk is scary. Deficits in a neurological exam are scary. It was all very scary. But, after one night in the hospital, I had another round of bloodwork and neurological tests done, including a CT scan, and the doctors were confident I was OK to be discharged. So after they said that, I left. My mother came to visit me to ensure I was safe while the medication left my system completely. This experience was a very serious example of what I have said since I started taking psychiatric medications: it is a complicated situation, and it isn’t always easy. Whether it is mild side effects like drowsiness or more serious ones that require hospitalization, it isn’t fun to experience them. However, there are incredible benefits to these medications as well. If a doctor is prescribing a medication to you, if they are a competent health care provider, they have determined that the benefits outweigh the potential costs. Doctors aren’t perfect, and they can’t see the future. So when a doctor recommends any kind of medication, not even just psychiatric, I encourage you to ask as many questions as you can. If you have to go to a hospital, have someone else there. They will have a different perspective and may ask questions you didn’t think of. We are all responsible for ensuring our bodies are functioning the best way they can. And sometimes, that requires medical intervention. Don’t be afraid to reach out for help. Even though stigma exists with psychiatric medications and mental illness, know that you are doing your best to take care of yourself. Look out for side effects with new medications, inform your doctor of how you feel, good and bad, and be involved in your health care. You are the reason for health care, and you deserve to know what your care includes. Finding the right medications can be difficult, and sometimes (but rarely) can be dangerous. Be strong, know that you can achieve what you are looking for, and be vigilant. I know you can get to where you want. I believe in you. Keep going.

    Brian Fu
    Brian Fu @brian-fu

    Scared About Stevens-Johnson Syndrome From New Medication

    Mental illness is one of those things that, if it needs to be treated with medications, becomes much more complicated as time goes on. For some people, finding the right medication is the end of the journey of trial-and-error. Their medications can be effective for years, even decades, with only minor dosage changes necessary as metabolism slows with age. But for others, depending on diagnosis, changing medications can be something that they have to face much more often. Unfortunately, I find myself in the second group. I have bipolar disorder II, and it is a mental illness characterized by instability. I’ve had to make major changes to my medications more times than I can count. And recently, I was speaking to my psychiatrist, and I told him I just really don’t think my medications are working anymore. So, he decided to start slowly shifting me off my current mood stabilizer and try a new one. The issue, and what scares me the most: the two, while they are in my system at the same time, can lead to some massively dangerous side effects. Now, with many medications, severe side effects are rare. But my situation is different. I’ve had my own experience with rare side effects, so I am always wary to know what the less-common side effects are. And with the new medication I’ve started, it has me particularly scared. One potential effect that has been reported is the development of something called Stevens-Johnson syndrome . It is a disease that is an effect of certain types of medication interactions. It is a skin disorder that involves the skin and mucous membranes underneath essentially dying and growing back. That doesn’t sound terrible right? Well, the issue is that it can progress to continue to kill more skin, and it can lead to some severe, deep and painful wounds in the skin. It is classified as a medical emergency, and at the first sign of symptoms, the response is to immediately go to an emergency room. It usually requires hospitalization for pain management, addressing the underlying causes and ensuring the wounds heal properly without getting infected. If left untreated, it can lead to something called toxic epidermal necrolysis. It is essentially the same thing, but much worse, and often leads to irreversible damage to the skin and mucous membranes. It is characterized, at minimum, by 30% of the skin on the body dying. Clearly this is something I’d like to avoid. The combination of the medications can lead to other serious effects, like seizures and tremors, but there is something particularly worrisome about the potential for Stevens-Johnson syndrome. In a study that analyzed the demographics of persons who were admitted to hospitals with the disease, a large majority of patients were of Asian descent. I am Asian, and Asians are 12 times more likely to develop the disease than Caucasian or Hispanic people. So, all in all, I’m scared. The medication on its own can lead to this, but the chances are greatly increased by the combination of the other medications I am on, and the fact that I belong to a demographic that is significantly more susceptible to developing it. But what does this say about medications overall? Maybe you’ve recently changed medications, and after reading the list of side effects, get scared or nervous about the potential of developing a serious one. I wish I had more comforting words than this, but this is what I can say: there is a reason the more serious side effects are classified as rare. Dangerous medications tend to not be used in regular medical practice. And if you are concerned, speak to your doctor. Competent health care providers don’t prescribe medications unless they believe the benefits will outweigh the potential costs, costs that aren’t even guaranteed to occur. Speaking to your health care provider regularly, especially during medication changes, is vital to ensure you stay well-informed about what you are taking every day. The last thing I want to do is take pills for reasons I don’t know. If your doctor says they want to prescribe you a new medication, or change your current medications, don’t be afraid to ask questions, including critical questions. If you don’t think it’s a good idea, speak up. Ultimately, you are in a doctor’s office to get help. And while you may not have gone to medical school, you still have the right to know everything about what treatments you are receiving. If you have a doctor you trust, and they insist the medication is safe and/or worth it, you should always ensure you follow your provider’s instructions carefully. Don’t stop medications on your own, and don’t take medications in the incorrect amount, or a time of day when you aren’t supposed to. While you should follow your doctor’s instructions, you have the right to know what you are doing for your health. Don’t be afraid of the tough conversations about medicine. Ask your doctor what they are prescribing you, how it will benefit you, what are the side effects in detail, what you should expect to feel or experience, what are good and bad signs after taking the medication for a while, etc. The more information patients have, the better the treatment will be. Currently, I’m a little scared about my situation. But I’m lucky to have a doctor I trust, and who explains what he is doing to me. And if you do start to experience things that seem like red flags, call your doctor and let them know. The more information they have, the better they can coordinate your treatment plan. Overall, the message I want to get across: make sure you get the information you want, and need, from your health care provider. Inversely, make sure you keep your provider informed of even the smallest side effects you feel. I certainly hope I do not need to go to the emergency room, but the fact that I know what to do if things do start to develop gives me a great deal of comfort. Stay informed, keep others informed, stay safe, and you will find a treatment plan that works for you. Don’t give up hope for relief; it is out there, but it just might take more work than you’d like or expected. I believe in you. Keep going.

    Community Voices

    The Zebra that Spoons

    Hey there!

    Sometimes in life, you are thrown curveballs. Sometimes they hit you in the face and other times you dodge them! I’m here to tell you that you are not alone and that we can fight through this.

    When I was young, I was predominantly healthy. From the age of five I was misdiagnosed with multiple Psychological disorders; from being on many different medicines, to being in the hospital suffering from StevensJohnsonSyndrome! Yep, you read that right! StevensJohnsonSyndrome! At the age of 14, I was on a medication called Tegretol. I ended up in the hospital for three months with SJS. The doctors were unaware of this condition, how to treat it and what the longtime risks would be. I not only had external effects, but I also had major internal effects. When I finally recovered, I started to notice a lot of change in how my body felt on a daily basis. Not too long after recovering, I was diagnosed with Dysautonomia… and of course being a young female, I was totally confused. My biggest struggle was POTS… I dealt with it and tried my hardest to manage, but as we all know passing out on a regular basis isn’t healthy. So I finally met with an electrophysiologist and had my first catheter ablation in 2015. Following this, I was diagnosed with Atrioventricular tachycardia syndrome and inappropriate sinus tachycardia. I’ve had multiple failed ablations and in January 2020, I had an sinus node modification. Finally we have won the battle and my resting heart rate is now lower. Backtracking a little… not only did I face heart conditions following SJS, but I also face Gastroparesis and pyloric stenosis… surgery was a big help! After seeing multiple specialist and going through a long journey of genetics… I have been diagnosed with Vascular EDS, mixed connective tissue disorder, MCAS, and much much more! Needless to say, these are my long term risks from SJS. On a daily basis, I infuse 2L of saline through my PORTACATH that I had placed in 2019. Not only does it help with my POTS but it helps with many of my conditions! Of course, as it may seem, dealing with such a wide range of ChronicIllness and RareDisease, it is almost impossible for me to work and stay active. I worked until the age of 22 and finally told myself that I just couldn’t do it anymore. I applied for disability and received benefits in 5 months! (Yes that’s super unheard of.) Being disabled are the age of 24 has brought a lot of confusion from family, friends and strangers. I get told often that I’m just “lazy”. I understand how that can be confusing, but until someone walks a mile in your shoes, they will remain unaware. I’m here to tell everyone, who is disabled or has a loved one that is disabled… this is a journey of ups and down. Never forget to smile and wake up daily knowing that you can fight through this! #POTS #RareDisease #ChronicIllness #StevensJohnsonSyndrome

    3 people are talking about this
    Community Voices

    Defeated and itchy

    Feeling a little defeated today. It marked the 3rd week of Lamotrigine and I woke up with the dreaded rash. My doctor says to discontinue use immediately and monitor it to be sure it's not Stevens-Johnson syndrome, which in itself is scary AF. But assuming the rash goes away without further complications, I'm still left with "What do I do now?" This was only the 1st med I've tried to manage my mood episodes and I know there are plenty more to try out there, but I was really hoping this one would work. Aside from the life-threatening rash thing, it seemed to carry the lowest risk of undesirable side effects. I see the dr next week but until then I just feel like a failure. How many meds did you guys have to try to get the right combo? #Bipolar2 #Bipolar #BipolarDepression #Lamotrigine #StevensJohnsonSyndrome #PsychiatricMedication

    9 people are talking about this
    Community Voices

    Anniversary of Illness #StevensJohnsonSyndrome #Anniversary

    Today marks 3 years since I got sick. And that is so heartbreaking to me. 3 years ago I was a 16 year old girl prescribed an anticonvulsant with a black box warning that brought on Steven Johnson Syndrome. And from that day forward nothing would ever be the same.
    Nobody told me the lifelong conditions that would’ve remained dormant had I not taken those pills.
    Up until that point I was healthy. Rarely got sick, no allergies, no real health complications in my whole life. I don’t even remember what it was like to feel healthy. To not hurt or feel nauseous or be throwing up or passing out or weak or exhausted and drained or or or.
    Everyday I think about how I would probably still be healthy if I hadn’t taken those pills. I wish for a do-over. I want my life back. Because this isn’t living.
    3 years ago a big part of me died. And now I’m trapped in this body that doesn’t care for me. It feels like much longer than 3 years of illness and lack of answers and struggling and being told I’m faking and feeling crazy and sad and heartbroken.
    But there is no redo button. I’m stuck with this. This is my new normal. And I wish it wasn’t, because I am so tired of fighting. So tired of losing the battle.
    When I got the notification from 3 years ago I cried. I mourned the loss of my health and the things that fell away with it like friends, relationships, happiness, and so much more.
    I wanted to be a ballerina or a heart surgeon or an author or an artist. Now I just want to be healthy. My future is no longer as promising as it once was. And somehow I have to figure out how to live through this.
    This has been the worst 3 years of my life. But I have also learned so much. About myself, my own strength, and about those around me. And while I would trade these ailments in a second, I wouldn’t trade what they’ve taught me.
    My body hurts, but my heart is full.

    1 person is talking about this
    Community Voices

    Feeling down & need to vent...

    My legs have been swelling a lot more than normal and leaking some clearish fluid at times so I saw my gp and just got my lab results. Looks like everything is ok except he wants me to work with a nurse for lymphedema. I don’t need any new diagnoses!! When I saw my gp that day he had a new nurse and when she saw my long list of allergies she asked if they were true allergies or just sensitivities “because with a list this long it rules out pretty much everything the doctors can give you”. While it may be a valid question there was something in her tone that set me off (and my hubby as well) and I began telling her how many meds caused Stevens-Johnson Syndrome and which caused violent vomiting, paranoia, hallucinations, seizures and so on and she says “oh, you’re one of those” in a snarky tone. One of what??! I’m also worried because with my CRPS I can’t stand to be touched on my legs, the left is the worst, and definitely can’t be in compression wrapping so I don’t know what the options are going to be. If they have to touch or rub me in any way I’m going to be screaming in pain at the top of my lungs! Can’t take diuretics. The day I saw him, doc said I had a good 20+ lbs of water weight on my legs and they weren’t that bad. My cyclic vomiting syndrome has been acting up lately. Not started vomiting yet 🤞but beyond nauseated and downing the phenergan. Think it has to do with stress though. All I can say is a lot of huge changes might happen in my life soon. And I’m having a hard time working around my current point in life with no help without knowing for certain if those changes will happen. I saw my mom tonight. Told her about my CVS and she just said “ Don’t start that again” I know what she meant but I don’t have any control over this! September brings my hubby’s bday, my bday, and our 22nd anniversary. I hate the whole month. I can’t stand my birthday. We never get to go on a trip or out for a nice night. Something (me) inevitably screws it up. I’d rather just skip to October and November, definitely can miss Christmas ugh too much stress, and cruise straight into next January from there. Feel a bit better, thanks for listening... #Lymphedema #ComplexRegionalPainSyndrome #CyclicVomitingSyndrome #Anxiety #Stress

    Community Voices

    What It Means to Be a Compliant Patient – And Why I Am One

    My mother was not a compliant patient. She would have side effects from medication and just stop taking them: The meds gave her sores in her mouth or nauseated her.  And that’s valid. We’ve all had medications that we couldn’t tolerate because of the side effects. But Mom stopped taking them without telling her doctor. Once she went to the emergency room, where they had a list of the meds she was supposedly still on and I had to tell intake, “No, she stopped taking that one. And that one too, I think.” (She was not mentally ill, but that’s where I’m going with this.)

    There is only one psychotropic medication I know of (though there may be others by now that I haven’t heard about), where the potential side effects are so horrible – potentially lethal – that patients are advised to stop taking them immediately and get medical help right away.  The side effect is called #StevensJohnsonSyndrome and it is a potentially fatal rash.  I wrote about it a few years ago. ( ( than that one instance, psychotropic medications should never be discontinued unless you have consulted your physician. You never know what withdrawal symptoms lie in wait for you, but they’re bound to be unpleasant, even if they don’t cause you to relapse, which could easily happen. Withdrawal from any drug is not fun; it’s to be avoided.

    Nonetheless, I read posts in support groups all the time which say that people have decided by themselves to stop taking a medication, or even all their medications on their own. I have friends who have taken their treatment into their own hands this way.

    There are several reasons they sometimes give for giving up medications. One is that the meds aren’t working. What they really mean is that the meds aren’t working yet. Many psychotropics don’t show positive effects until they have built up in your bloodstream, which can easily take four to six weeks. Expecting results in a day or two is unreasonable.

    Others stop taking their meds because they “feel better” and think they no longer need the pills. This is just ridiculous. The meds are the reason that you feel better. Your psychiatric condition does not just go away, like the flu, when you feel better. Your disorder may soon come roaring back (or creeping back). And the thing is, when you restart a medication, it sometimes no longer works as effectively. Then you have to start all over with a new prescription and have another four to six weeks of symptoms while you wait to find out if it works or doesn’t.

    Still other people simply don’t like taking medications.  This I don’t understand.  People take meds for flu and infections and such conditions and never seem to resent them. Maybe it’s the idea that you could well be – will likely be – on psychotropics for the rest of your life. But lots of people have meds they need for life – insulin, cholesterol meds, anti-inflammatories, #Asthma meds, thyroid meds, and others. People don’t quit taking those just because they don’t like to take pills or injections.

    I think the real reason people don’t like to take their psychiatric meds is that they’re psychiatric meds. There is still massive stigma around the subject of mental illness. Taking medication for a mental illness means admitting you have one, which some people are reluctant to do.

    Or they may be giving in to “pill-shaming.” There are plenty of people, perhaps in your own family – and certainly across the Internet – who will tell you that all you need is self-love or affirmations or sunshine or exercise or vitamins or meditation or willpower to banish your mental illness. Funny how they never tell people that sunshine will cure their broken leg or that exercise will cure their #BreastCancer.

    I hesitate to say that I love my psychotropics, but in a way I do. They have brought me out of states of mind that were harmful to me. They have made it possible for me to function and create and communicate. They probably have saved my life.

    Occasionally I let my psychiatrist know that I may need a change in dosage or that one of meds is no longer working. I’ve even reviewed with him whether there are any meds I could quit taking (there aren’t at the moment). But I keep taking them faithfully, every day, morning and night.

    I need the psychotropics. So I am a compliant patient.

    Community Voices


    1 person is talking about this
    Community Voices

    First Post :Parent of Addict

    I have an adult daughter who seems to enjoy ripping me to shreds every chance she gets.. oh did I mention she’s also an addict? Her drug of choice is Heroine or as the Millennial call it “H”. I have lost a child, he was her older brother. For the last 6 years or so I have watched my kid attempt to kill herself for all the world to view. She delights in telling me exactly how she will do it to telling me I’m a terrible person who doesn’t deserve to be called mom.. if you knew our life you would see the truth. Suffice to say my daughter seems to go back and forth between blaming me for everything and threatening to kill herself. She has #PTSD #DissociativeIdentityDisorder #Parentsofaddicts #unconditionallove #Notadoormat #StevensJohnsonSyndrome #SJSTENS I can’t continue to take her nastiness and I don’t want to feel guilty for trying to protect myself either. I could write a book, but my daughter is the child of #Divorce . I know she has to be ready for help.How do I stop the guilt? Sincerely,
    Truly Lost

    10 people are talking about this
    Community Voices

    I have never met someone else that has had Steven’s-Johnson syndrome. It would be nice to talk to / know of at least one other person that might somewhat understand. Thank you.

    2 people are talking about this