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ID: 100030 Time/Date: 01:48:15 PM PDT/ 06-28-2009
Name: PRASHANT ATRE
Email Address: atreprashant@yahoo.com
Story: My 7 years daughter was recently affect the reaction of SJS, Story is like follows, 16 March 2009 she was got fever it was sunday. Next day on 17th we have consult our doctor and given her SEPTRON. At evening she get affeted by the rash and some burn spots. We have again contected to our doctor, they come into couclusion on that my daughter has got reaction of SJS. Due to we have get noticed it in time and our doctor given quick treatment, her SJS reaction is get in to control. But to control the reaction doctor given hre the mild doses of the steroids. So she get some weekness. But according to doctor she will come back normal within in month.

My doctor suggested to surf this site to know the SJS. I shocked to seen about the SJS.

THANK GOD you saved my daughter from hevy attact of SJS.
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ID: 100029 Time/Date: 01:45:50 PM PDT/ 06-28-2009
Name: Tom
Email Address: tabatecpa@hotmail.com
Story: My 11 year old daughter has had 6 episodes of Stevens Johnson Syndrome which we believe is casued by Mycoplasma bacteria. We have not been able to find a doctor who is willing to really research her condition and try to find an effective solution or treatment. As a result she has had to suffer through these episodes and has been hospitalized on two occasions. If there is anyone who is aware of an effective treatment option or a doctor who is interested in a child with recurrent Stevens Johnson please send an email as we are desperate for a solution.
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ID: 100028 Time/Date: 01:45:04 PM PDT/ 06-28-2009
Name: Teresa Pittman
Email Address: jazzyjaquez@yahoo.com
Story: My story begins in December 2004. I worked sick all week at the end of the day I would come home take a bath and take ibuprofen because my head had been hurting, I assumed I was coming down with a cold. This went on until Friday December 23,2004. I called my mom to take me to the emergency room because I could't see and I was exausted.
They gave me some potassium pills I couldn't swallow them. I went home not knowing what was wrong. The next day was Christmas the worst by then I was so weak, I couldn't brush my teeh my mouth was soar. I just layed in the bed for 2 days my mother and my husband took me to the doctors office and I tod him if I go back home Im going to die please put me in the hospital. He did I was admitted to an isolation room. The next morning a team of doctors gathered in my room asking me all kinds of questions. By now my left eye was swollen shut and I couldn't talk. They testedme for everything under the sun. TB, Aids and Lupus. My teperature was so high my lips were scarred. The doctor put me on Valtrex for herpes because of lesions in my mouth. My eyes were oozing thick pus. blood was taken from me every 4 hours for a week.I had enough. The eye doctor came in every afternoon to scrape my eyes with a metal instrument agonizing pain I have ever felt. I was dismissed without knowing what was wrong. I continued to go to the eye doctor by know I was just about blind(I was a nursing student there goes my career)A specilalist was called in from Atlanta , he ask me if I evr heard of SJS I immediately came home and looked it up finally I knew what was going on every symptom every thing I had gone through was staring at me on my computer screen. I suffer today with my eyes the are much weaker than they used to be. I couldn't drive at night for 3 years and really didn't want to drive out of town I rarely did. 5 Years later and I still feel and see the reprucussions of this syndrome by looking in the mirror everyday. My lips and my eyes show me everyday of that terrible episode in my life. I thank God my family took me to the doctors office that day I truly believe I would have died and my family not knowing what was going on.
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ID: 100027 Time/Date: 01:43:54 PM PDT/ 06-28-2009
Name: Donna Szatkowski
Email Address: donna.szatkowski@gmail.com
Story: Hi, my name is Donna and here is my story. I was recently put on Lamictal (generic form) and was told that there was a slight possibility that I may develop a skin rash due to this drug. My psych. had said, "If this does occur, head directly to the ER room", which I did. I was put on Lamictal (generic) on 3/1/09 at a dose of 25 mg to be titrated by 25mg every 20 days. On _______, I was up to a 75mg dose and was so very itchy. I thought nothing of this until I went to take a shower that evening and almost fainted at my reflection in the mirror. I was heavily marked with silver-dollar size burn marks on my upper torso, lower torso and back. In addition, I had huge boils/lesions on my arms and back as well. My lips began to swell and my ears reddened, a short time afterwards my face looked as if I was just in the sun all day w/out wearing sunblock. I immediately dialed 911 and was taken to the ER room (Elmhurst, NY). I told the EMT people that my psych had said if I developed a rash to go to the ER immediately. I gave all my information to the EMT as well as the nurse at the hospital. I got a a quick visual from the doctor in ER, he only looked at my chest and I was given a shot of benedryl and a tablet of pretizone and was told to wait on the side to see if I felt any other symptons. After a 1/2 hour, I asked someone if I could leave, they said yes, w/out giving me any after care or release papers!!! ER these days!! -- I tell you, not good. I went home and was unable to sleep due to the feeling as if I were on fire, the itching, the welts, the boils, the ringing in my ears. I went to my GP the next day and the nurse who took my intake just so happen to be involved in a study of Lamictal users. She made my GP aware of the drug and when he came in to see me was quite concerned. He explained SJS and said if, I had developed one more lesion or had no relief by end of day that I should go to the ER once again. He took blood and urine samples and gave me a shot of benedryl and an 80% shot of an

it-inflammatory medicine in my right arm. He also told me that if I did go back to the ER to have the doctor look up Lamicatal in the PRM (Physicians reference manual). Needless to say, I had no relief the next day, went back to another ER (NY Hospital/NYC). I told the doctor about the PRM, she shook her head, said it wasn't SJS?? and gave me 25mg of benedryl and 50 mg of pretizone (the same thing the previous ER doctor gave me). This time, my symptons subsided some-- my itichiness subsided and my burning feeling somewhat subsided as well. I was so happy, finally--- to be put out of misery after 3 days. She gave me 2 pills of pretizone (one for the next 2 days) and benedryl and told me that I would be all cleared up by Friday. When I returned home, I was finally at ease... after roughly 6 hours past my ER visit. my symptons came back fierecly, the boils errupted again, the itichiness, the burning and now my ears were hurting terribly, inside as well as outside. I cried my eyes out. The next day I had my therapy appt. and my therapist suggested that maybe I NOT go on vacation, as I had planned to go to Arizona on Saturday. I was real upset and called my psych, who Finally decided t see me. We were scheduled to meet at 4pm.. but I didn't wind up seeing him until 5:45pm. all the time thinking I was going to die, I actualy thought about writing a will, I never felt this way in my entire life. When I saw him he said it wasn't SJS. He put me on Hydroxyzine Pamoate 50mg and told me that he didn't know when my lesions would clear up and that I could indeed go on vacation. Sunday-- (a full week after my initial outbreak-- my skin lesions did clear up some) but my face is inflamed and now my joints hurt so terribly. I did and still do have SJS. I am outraged that no-one other than my GP recognized this. What is the problem?? SJS has to be more conveyed and Physicians need to be made aware of this terrible thing. I sit hear in tears, inflamed and in pain. I will file a claim w/the FDA as well as with G

SK, the manufacturer of the drug. MY nightmare continues. If I may be of any help to any1 going through a similar situation, I am here for you and will try to help.
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ID: 100026 Time/Date: 01:42:19 PM PDT/ 06-28-2009
Name: margaret
Email Address: margaret_mccreadie@yahoo.co.uk
Story: what a great job you are doing with this web site my family hadnt heard of sjs before yesterday, when my 14yr old nephew was diagnosed with it he had severe blisters in his mouth for 3 weeks which the doctor put down to thrush and gave him nizstan and ibrufen, it was only when we persisted that someone took a swab that we were told of the horror of what he has i say horror because its such a nasty and sometimes fatal disease. he is in hospital getting treated and since yesterday is looking better than he has in weeks. i salute you in running this website as it is great information to people like us who have never heard of this disease and we greatly appreciate the information that you provide. bravo to you all and god bless.
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ID: 100025 Time/Date: 01:41:16 PM PDT/ 06-28-2009
Name: Jenny Brown
Email Address: jchocolates@gmail.com
Story: I became sick with stevens johnson syndrome in mid January. Spent two weeks in the hospital. I was very scared and thought I was dieing. It is now March 19th and this was my first week back to work since getting sick. I see doctors almost every week but I still suffer from some scarring, severe eye pain, dry burning eyes. Extreme light sensitivity. I wear a baseball cap and sunglasses most of the time, but the healing process has taken so long. I spent months at home recovering and it resulted in some depression. I am so frustrated about my recovery and dont know anyone who can relate to what I am going through. I am seeking out others who have this illness and maybe we can share experiences and offer support, information, and advice. I dont check email very often because the computer hurts my eyes, but please write to me if you can share your hardships and offer support.
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ID: 100024 Time/Date: 01:40:29 PM PDT/ 06-28-2009
Name: Barbara Coffey
Email Address: barbaracoffey5@gmail.com
Story: My nephew who lives with me and is 36 got SJS nine months ago following surgery to remove tumors in his cheek. This was the second operation and there was a chance he could loose his facial muscle. Instead he had a reaction to one of three drugs. The doctor wnated to do radiation right away but because of the SJS that didnt happen. Now the doctor wants to do the radiation as soon as possible since another tumor has grown. If the radiation doesnt work then he will have surgery and definitely loose all muscle control on the left side of his face. My concerns are many. I am afraid that the radiation which needs to be a high level dose over six to eight weeks might bring back symptoms of SJS. Ihave been on this sight and emailed a doctor at John Hopkins but not received any help. Does anyone know of a doctor in NYC or elsewhere who has some expertise with radiation and SJS. All help would be greatfully accepted.
Thanks so much
Barbara
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ID: 100023 Time/Date: 01:39:56 PM PDT/ 06-28-2009
Name: Karen Callaghan
Email Address: EmailAddress@notprovided.com
Story: I took Diflucan One tablet and began to have reactions straight away. I had tingling in my mouth and my lips blew up to about 6 times their size. After when they began to deflate my lips became blistered and the inside of my mouth ulcerated. I am in extreme pain and 5 days after having this I went to the doctor and was told that I had SJS. I couldn't believe that taking something over the counter could cause such a horrible side effect.

Anyone who is debating taking Diflucan One and has this problem, please don't.
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ID: 100022 Time/Date: 01:38:32 PM PDT/ 06-28-2009
Name: CAROL LANDBERG
Email Address: EmailAddress@notprovided.com
Story: This happened about 25 years ago. I went to my doctor for a persistent cold and was sitting in the "inner" waiting room when the doctor walked through as he was attending to another patient. He stopped in his tracks as he passed me waiting. Fortunately, it was summer time and I was in bermuda shorts. I had not noticed the blotchy bruises that were appearing on my legs. He did. He pulled me into an examination room; and after examining me and asking if I had taken any medicine, he told me that I had SJS onset from the sulfa medicine prescribed to me by another doctor. He told me about SJS and its seriousness. He put me on liquid potassium drops which I had to take (in decreasing doses) for 3 months.
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ID: 100021 Time/Date: 01:37:10 PM PDT/ 06-28-2009
Name: roseanna ayres
Email Address: EmailAddress@notprovided.com
Story: I have been a critical care nurse for 25 years, but when I developed SJS/TENS in June, 1996, I had never heard of the diagnosis. I had seen one case of TENS caused by beta strep septicemia where I worked. I had been seeing an internal medicine physician from my hospital for at least a year due to chronic autoimmune symptoms. I had several symptoms of Lupus, but a negative ANA. Although I had been diagnosed with JRA and asthma at the age of 4 and with fibromyalgia in 1994, my doctor could not find anything else wrong. He even went so far as to imply my repeated visits and symptoms were a cry of attention from him! (At the time I was married with children ages 7, 4, 2). Needless to say, I was quite upset. I was finally given another NSAID to try, Feldene. I took the drug for two weeks before SJS symptoms developed. I woke up one morning with hives on my chest, face and arms. Thinking that I was having an allergic reaction to something that I ate the night before, I took a dose of Benadryl. It was my day off work, so I went about the daily mommy chores. The symptoms seemed to be getting worse, but since I was home and without a babysitter, I chose to take more Benadryl. As with most patients in shock, I did not realize how much danger I was in. I called my physician and left a message with the medical assistant. I never received a return phone call. By the time my husband returned home from work, I began to notice blisters inside my mouth and my eyes were hurting really bad. Despite how I felt, my husband insisted we go out to eat and then pick out the color for our new minivan. I continued to complain to my husband (who ignored me) and by the time we returned home I asked him if he thought I looked bad enough to go to the ER. He said he didn't think so, but to wake him up if I felt like I needed to go. Three hours later I drove myself to the ER without even waking him to tell him I was leaving. By the time I got to the hospital I could barely see the big red "emergency" sign at the entrance.


I had no blood pressure, was in extreme pain and began to have troube breathing. I was within 10 minutes of death. Every nurses worst nightmare is being taken care of by her coworkers. I woke up in the ICU on a ventilator with my coworkers at my side. I was diagnosed with Lupus, SJS. The ER doc said two things that I will never forget. He said I think this is a severe case of SJS, but I have never really seen one, and you will probably get a lot worse before you start to get better. Then he hesitated and said, IF you get better, because there are two kinds of people with SJS....those who die and those who wish they had. Three months in the hospital and then I went home on special IV nutrition. I could only walk about 10 feet and weighed 81 pounds. My husband gave our children to a friend to take care of and only saw them about once a week. My oldest daughter spent her 5th birthday there without her mother or father, and by the time I was able to go home, my youngest daughter did not know who I was. She would not come to me and cried if I tried to hug her. My apearance scared her! I went back to work after 4 months. I have had 9 eye surgeries, am legally blind in my right eye, still have GI problems and kidney problems. I later had 7 jaw/facial surgeries to repair damage from the JRA. I had to quit working 5 years ago and go on social security disability. All of this has taken a toll on my family. Needless to say, I am now divorced. He cheated on me last year (I believe it was the second time). The divorce rate jumps to 90% when one spouse becomes chronically ill. My children have had a difficult time dealing with everything. My youngest daughter blames me for the divorce. She is living with her father and currently is not speaking to me. I will soon loose my drivers license, and now that the divorce is final, I need to find another place to live that I can aford on SSI. SJS has destroyed my health, career, marriage, and who knows what else! I have given up on counceling at my church, esp


ecially since my ex sits in the same church and has no remorse. I need to find a support group or psychologist who understands chronic illness. I am battling depression as well as the chronic pain, sjogrens syndrome, fibromyalgia, menopause, glaucoma, joint damage, Lupus, etc. etc. Since the divorce this year, I feel like my life is meaningless. I need lots of friends who can understand, and lots of hope.
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