Name :: Vicki
Email_address :: grambaxter2000@msn.com
Story :: I was 12 years old when I contracted SJS. At that time, no one really
knew what it was. I was from a small town and thank the Lord that there was at
least one Dr. that recognized what was going on with me.
The dr that was treating me did not know what I had, he tested me for all kinds
of things but just didn't know. There came a time when the dr wouldnt even come
into the room with me.
I was taken to Carswell AFB and then transferred to Brooks Army Medical Center
where I stayed for 2 miserable weeks. I have little memory of the things that
went on with me. All I can recall is the horific smell there.
I am 34 now and still remember everyday when I look into the mirror or wipe the
tears from my eyes. They continue to give me problems to this day but atleast I
still have my eyesight.
Name :: dave
Email_address :: dpconstantino@yahoo.com
Story :: This is my story: I’m a Filipino, 36 years of age.
I’m one of the few who has this rare SJS disorder. It was on July 21st 2001, My
eyes became very sore and itchy. I thought i was having a sore eyes
or sort of irritation.
Soon my mouth begun to have blisters as if im chewing some pebbles or broken
glass. That night i begun to chill and having fever and cough.
The next day i told my wife and aunt about this and ask them to go with me at
the nearest clinic. My whole lips became black and my eyes are irritated,
The doctor had no idea about my illness, and suggest that i should be confined
immediately. Soon i had a difficulty in breathing and my body felt weak.
We’ve been to two hospitals, after being sent away from two emergency rooms, the
third hospital admitted me, I pray the Lord (Help me, this must be it!).
I ask myself what was happening to me? I don’t have any idea and i can’t walk
for too long.
they diagnosed me with Stevens Johnson Syndrome (SJS). SJS is a severe allergic
reaction to medication. Most patients of SJS do not survive.
If they do survive they will have some kind of handicap.That afternoon the
doctor diagnose me and i heard the conversation of my aunt and the doctor that i
have a
STEVEN-JOHNSON SYNDROME. I’m scared and soon thinking of my kids, i felt sadness
and begun to pray, i had never heard of this disease and
knew absolutely nothing about it. It seems i had an allergic reaction to the
anti-biotic i had taken. Soon the nurses came and put dextrose, oxygen & ECG at
me.
The head doctor at the emergency assigned four more doctors, One for internal,
dermatologist, infectious and optamologist.
They took blood samples on my arms many times to find out were i got this
disease. I told my wife to bring me to a
ward cause it’s cheaper but the doctor insist to bring me to a private room so i
will be isolated. By then, blisters had started forming on my face, chest, lips,
neck,
arms, soon my whole body itself from head to toe. It was unbearable pain, it was
like my skin was burning, I could see the look of disgust on the face of my aunt
and my wife and the visitors for what was happening to me. The doctor told my
wife to pray hard and miracle is the only change, all they can do is to cry for
me.
Everyday seems getting hard for me to sleep and could move in my bed, All i can
do is pray and waiting the Lord to take me.
Everyone who saw me could not believe the way i looked like. Even my kids when
they visit me could not recognized me as if i was turned into a monster.
Soon my eyes begun to shut and very difficult to see. I could not eat anything,
could hardly drink, my eyes were in great pain and i couldn’t
open my eyes for how many days. My energy level dropped, I was sleeping all day,
and everytime i woke up i had to literally tear my lips bit by bit
(through a sealed mouth) Each night they would bleed and scab together, it was
cracked and bleeding. My mouth and throat were full of lesions, even a
small swallow of mineral water was terribly painful. I have to gurgle every
minute by using mixed sodium chloride and bactidol to remove small skin
particles
that comes from the blister on my throat. Urinating became indescribably
painful. My wife took very good care of me during that time she
became my nurse whose responsible of putting eyedrops, rubbing phenolated
calamine lotion and ointment (vandol) on blisters all over my body and
special oitment for my fingers three times a day.
When the skin peeling normally, and my Internal organs kept working, My wife and
relative coulnd’t believe i will survive this tragic illness and soon i’m
getting
strong and soon drinking water little by little. It was a miracle, God gives me
strentght and so greatful that my eyesight we’re not totally damaged.
my doctors allows me to go home after spending 16 painful days at the hospitals.
Am now recovering at home. I can honestly say that it was one of the most
horrible and painful experiences of my life but i am lucky. My fingernails
indented, bubbled and weekend. Later the whole nails broke off and i lost a lot
of hair.
I was very close to dying but had both parents, mother in law, my wife,
relatives and friends support and pray all the way thoroughly they kept praying
and praying.
It’s been three years now after i was visually impaired. I got this dry eye
syndrome and Photophobia. Lost nail beds and unable to perspire even i walk for
a longer time.
Now I’m wearing ultra violet protection glasses designed to restore vision that
has been severely impaired by SJS and a lifetime medication for my eyes.
I’m not sure what drugs caused my SJS but for sure i’ll be very extra careful in
taking drugs, maybe herbal medicine can help a lot. I know everything
happens for a reason and i have faith in God and the prayers are helping
immensely. I can't express enough my heart goes out to anyone who has
had to deal with this horrific disease the scars last forever both physical and
emotional.
I pray for those who have suffered much more than i that our Lord will give them
comfort like what he did to me. Thanks Be the LORD GOD Almighty
Psalm 37:5 Commit your way to the Lord, trust also in Him, and He shall bring it
to pass.
Name :: Floxed
Email_address :: noemail@no.com
Story :: I want to warn everyone about fluoroquinolones. They include drugs
commonly known as Cipro, Floxin, Tequin, Levaquin and many more. Your pet may
even be given these drugs although they have been proven to cause lameness in
dogs, that's right in the PDR ! Also no one under 18 is supposed to have these
drugs and if you are elderly it's only with extreme caution etc. But doctors
and vets hand these things out like candy, despite the proven fact and testimony
from the CDC that regular old penicillin drugs that have been around forever
work as well on anything EVEN ANTHRAX.
Anyway I have suffered a LOT due to taking Cipro, from joint and muscle pain, to
anxiety, depression, insomnia, eye pain, vision problems, coordination problems,
nerve problems like tingling, crawling, buzzing sensations, it's enough to drive
a person round the bend, there are really too many symptoms I have now, to even
list it here !
The main thing I want you all to know is that these do not go away after you
stop taking it in fact most of them set in about a week or two later once your
immune system fully figures out the poison it just had put through it. That is
common for those who have this reaction. Your doctor may try and tell you it
isn't possible - mine did when I expressed worry before taking it. I took his
advice and now am I ever sorry. I had a horrible reaction to it, thought I was
done and the worst came about a week after I STOPPED taking Cipro.
It has been about six months now and I am still not over it although many things
got better. I had none of these problems before Cipro ! I hear about people
still ill years later or having tendon or ligament problems. I now walk as if I
am about 80 years old, I'm about half that old.
This drug has really wrecked my life and dreams and plans and my family's too.
All from taking a few days worth of this thing. For many people this is a
horrible and poisonous pill. Please do not risk it unless your other choice
literally is life vs. death. It is not worth it for the many other reasons
most Drs give it. I sure would have rather had a UTI than five months of a
nightmare. You can take cranberry for a UTI and with no side effects. Doctors
are WAY too pill happy and don't take side effects seriously vs the risk.
There is no way to know who will have this reaction and it just is not worth it.
I was a few months laid up in bed with pain so severe all I could do was lie
there and cry til I got worn out and could sleep. Tests showed elevated ENA
and ANA and other bad things but doctors will still not believe a pill could
cause this.
WAKE UP doctors, is what I want to say. And to patients: Stick to your
intuition, doctors only care about the $$$$.
Name :: sandy mcpartland
Story :: Thank you for the information and this website concerning SJS!! A close
friend of ours has just been diagnosed for the second time with SJS and is now
in the intensive care unit. You're absolutely right about the general lack of
knowledge concerning this disease - while our friend was lucky in that he was
diagnosed fairly quickly the first time (four years ago), the chance of a
recurrence was never mentioned to him. Drug allergies were also never discussed
as being a possible cause of the disease. The current episode began with what
he thought was a bad cold - sore throat, cough, etc. He treated the symptoms
with otc drugs - and went from bad to worse. Within hours of the onset of the
first blisters around his eyes and in his nose he became completely unable to
talk, could no longer swallow, and was unable to see out of his swollen eyes.
Luckily he and his wife had already suspected SJS and had to convince the ER
staff that they needed a doctor familiar with the disease. He knows from past
experience that he's in for a rough ride, but our prayers are with him and we're
optimistic for a good outcome! This is the first time my husband and iI have
ever heard of this disease, and your site has provided us with a wealth of
informaton. Thanks and keep up the good work!
Sandy McParyland
Name :: julie bryant
Email_address :: jcrackle@alltell.net
Story :: My mother had SJS about 4 months before she died and ever since then i
have tried to find all the information i can on this awful disease that gets
misdiagnosis alot , i can remeber my mother suffering and we went thru
debridment of her lower legs where she had heart surgery and wetting down
bandages so i could get them changed it was just awful thats why i'm back in
school and became an emt so i could help people .I think the supprt group you
have is wonderful because it gives people a place to come and tell thier story
to people who will listen . I thank you for this
sincerly ,
julie bryant
Name :: jill w
Email_address :: Jyllian@hotmail.com
Story :: Hello, My name is Jill and my horror started about 2 weeks ago.
...I had had a fever for about a week which wasnt going away...my insurance isnt
the best which forced me to go to one of those walk in medical places, where i
got an awful doctor, who diagnosed me with the flu then put me on Sulfa...which
no doctor can understand why she did this...
a day later my lips started to swell...2 days later I had horrible horrible
hemmhoraging in my eyes and conjunctivitus...,,,i continued to take the sulfa
for about 6 days till my mother realized i was having an alergic reaction and it
was back to the walk in medical place for me...
I didnt even get a doctor the second time...i got a doctors assistant who told
me i had had an alergic reaction to sulfa, and that i should not take it any
more...he also told me that the conjunctivitus was from an "upper respitory
infection"
So, instead of putting me on something for my allergic reaction, he just tells
me to stop taking the sulfa, and put me on a new antibiotic instead...i wasnt
getting any better and i was getting worse, now i was getting hives, and my lips
were all purple with scabs and the inside of my mouth was beginning to
sting...and my face was beginning to swell...i was not even recognizable....
well, i went back to the quack doctor who was very nasty and rude askig why i
wasnt treated for the alergic reaction...she screamed at tme and treated me as
if it was all my fault...she had me so upset i was crying..
she perscribed some low dose of steriods for me....and my mouth continued to get
worse, so i phoned the pharmacist and asked her if this could possibley be
thrush,,,,
well this pharmacist was a dear dear woman, who rememberd me from the night
before...she had seen my face and was allarmed and was going to call me..she
told me she thought i might have something called stevens johnson syndrome...she
had seen it before when in medical school... so i called the doctor and told him
and this pharmacist, very concerned, also called the doctor and voiced her
susupicions and inisited on seeing me right away..
he called me in thinking what i had was not stevens johnsons but put me on a
higher dose of steriod...i was progresively getting worse, and by thursday, iw
as back in there , even the doctor was allarmed,,,he called the emergencey room
at the hospital where i was seen by an infectious disease doctor, who told me i
had TEN (a sort of stevens johnson).
well she basically told me to stop takihng all meds, steriods were not the drug
of choice in my case, as they were only making matters worse, and basically told
me all i can do is let it go away on its own..which may take a few weeks...
I am in horrific pain...well actually my mouth isnt as bad as it was, but it is
still bad...i feel now like i may be developing an urinary tract infection..
for me this has been an nightmare i cannot wake up from ...
i am quite scared of the unknown...and very very uncomfortable..
the story continues..the doctor (the specialist from teh emergency room)has been
calling me daily..i may have to go in tomorrow for an urinalysis...i guess we
will see from here...
anyhow, if anyone who has had tEN /or SJS would like to e mail me to chat, my e
mail address is
Jyllian@hotmail.com
its good to talk to somoene who knows what y ou are going through...it hasnt
been a picnic, thats for sure...
Luv, Jill
Name :: Carol Burt
Email_address :: everywoman128@yahoo.com
Story :: I'm very scared, but very glad this website and this foundation exist.
My grandson, Ian, is 15 months old. He's had a rough winter. For the first
year of his life he was kept at home with his other grandmother, who lived with
them for a year. After that, he had to go to daycare, and he has been sick a
lot since then.
He recently had pneumonia, but had recovered well from that. Then, last
Wednesday (02/02/2005), he started exhibiting cold symptoms and running a fever
again. My daughter took him to the doctor and was told he had an upper
respiratory bacterial infection. He was seen by the nurse practitioner, since
the doctor was not available. An antibiotic was prescribed. The next morning
Ian seemed better, but had a rash on his stomach. By afternoon a flat red rash
had covered his stomach, thighs, legs, feet and ankles, one side of his head,
and his neck. They took him to the emergency room, were sent instead to Urgent
Care, where they waited three hours. As soon as the urgent care doctor saw him,
he sent them back to ER. At ER, they admitted him.
The attending doctor, a pediatrician, had seen SJS before, and immediately
suspected it (thank God), so she had an IV started to keep him hydrated and was
giving him an antihistamine to control itching and hopefully stem the allergic
attack.
By the time he was admitted, his ankles were purple and he had bruised blotches
and target sores developing. I am a thousand miles away, but my daughter and I
were keeping up an almost constant telephone conversation. I immediately began
researching on the web, and found your site (thank God, again). As I studied
the resources, I found the recent lawsuit regarding children's Motrin, and
realized my daughter had said the doctor was giving Ian Motrin for pain and
fever. They had also been giving him Motrin before for a couple of days for
fever.
I called my daughter and told her NSAIDS like Motrin and Advil are suspected in
SJS, and she told the doctor. Thankfully, this doctor was open and grateful we
had told her. She said she hadn't heard of that recent development, nor had she
known a lawsuit had been filed implicating Motrin. She stopped the Motrin
immediately and began using Tylenol instead.
At this point, they are not sure if my grandson is going to develop full SJS,
and they are hoping it will stop with Erythema Malforme. However, as I am
writing this, my daughter has just called to say he has developed two new
blisters on his lips and now has an ulcer inside his mouth. He also has
blister-like sores around his rectum, but none on his genitalia.
Poor baby is only 15 months old and is crying continuously, but the doctor is
reluctant to order any medicines she doesn't have to. I am hoping she begins
steroid therapy, but I don't know if she thinks it is necessary at this point.
She has been wonderful, but I don't want her to think we are trying to play
doctor. However, if there is no improvement and things continue to go downhill
tonight, I am going to suggest she look into trying cortisteroid (sp?)
treatment.
One of his ears is purple, and most of the raised rash area is turning into the
target looking sores. I'm afraid it is only beginning...and will get worse.
The development of sores on his lips has really frightened us.
They are in Sarasota, Florida, and the doctor said if he worsens, she will
immediately transfer him to All Children's Hospital in Tampa, Florida. Does
anyone know of any doctor in Florida experienced with this?
I'm scared to death and expect to be leaving soon to travel there unless things
are a lot better tomorrow.
I'm so glad this foundation is here. We would be so lost about it if we hadn't
had this site to educate ourselves, and even help our doctor.
Pray for us. I will keep posting new information. I would be happy to hear
from anyone who has had any experience on a diagnosis of Erythema Multiforma
turning into SJS or TEN. I'm scared about the swelling of his ankles, ears and
eyelids and the purple discoloration which is getting worse.
Carol Burt
Name :: Suerathia C. Turner
Email_address :: turnergifted1190@sbcglobal.net
Story :: I rec'd a phone call from Franklin County Children Services on a Tuesday
saying my granddaughter Jamie who was 16 years old was hospitalized at Riley
Hospital with Stevens Johnson Syndrome. I had never ever heard of anything like
that. I am a graduate nurse and still I'd never heard of anything like this. So
I tried to contact him, but when I couldn't reach him I looked it up on the
internet and at the same time got LaDoga Academy on the phone to find out what
happened to my granddaughter. I was reading the information I had pulled up on
the internet and waiting for someone at Ladoga to get on the phone. When they
did, I knew I had to get to Indianapolis right away, my granddaugher was in
serious trouble with a capital T. I learned that she had gotten sick and kept
there at the institution with a very high fever, and when it got to 105.6 they
finally felt it was serious enough, so they took her to the hospital and treated
her for an STD that she didn't have. They administered three large doses of
penicillin, sent her back to Ladoga where she became increasingly worse. Her
eyes were swollen shut, and her lips looked as though they would burst, she was
clamy to the touch and dizzy, unable to stand up on her own, painful sores in
her vagina, skin rash and finally she was transfered to Riley Childrens Hospital
where she began to get the treatment she should have had days even maybe a week
sooner, but it seems they all feel it's too late now, because they're only
giving her less than a 1% chance of recovering. This is the most horrible thing
I have ever seen Jamie doesn't even look human anymore, and you can tell by some
of the expressions of the staff that they've really given up hope and it's so
painful to watch but I will never leave my baby under any circumstances. I pray
that no one else ever in life has to experience what I am now going through yet
I'm sure others will because there is always someone out there who refuse to
take the necessary steps that need to be taken to catch this from the beginning.
My granddaughter only weighed 98 lbs. from the beginning, she wears a size one.
She lost over 75% of her skin in two days, though I still have hope it's very
difficult to watch a child that was so full of life and energy lying on a bed in
this condition. I pray sincerely for anyone who's ever had to go through this
and all those responsible. No one should have to suffer like I've seen and am
seeing my granddaughter suffer. My prayers are with all of you experiencing this
and all those having to minister to thes children and people with this terrible
disorder; especially those people who have to experience it when it could have
been completely avoided from the beginning.
God Bless,
Suerathia C. Turner.....Jamie's grandma.
Name :: Cathy W.
Story :: I found your website after searching about Stevens Johnson Syndrom and
Sulfa Drugs.
I had SJS as a child and can only imagine what my parents went through. I read
the story about Julie and it made me think about my parents as well, I hope and
pray that she is doing better.
I was in the hospital for several weeks and was stuck in a sterile room where
people had to put on special clothes if they wanted to see me. I do not remember
any of it, as I was so little, but I have seen pictures of myself and it was
quite terrifying. I must be one of the lucky ones, as my eye sight is just about
20/20. I do have ear damage and wear a hearing aid, but I belive that my ear
problems started before SJS. I was given Sulfa drugs to help with the SJS, but
it made it 100% worse, I was then diagnosed with having a Sulfa allergy.
About 25 years later, I am pretty healthy, though I do get sick more easily than
most people. I also have several allergies, and follow a diet to stay away from
as many as I can.
I have a current concern however, two days ago my eye started itching, now it is
so puffy, I can hardly open it. I went to the doctor this morning and she has
put me on antibiotics, as she feels it's an infection. However, she also
discovered that I have a lump on my throat. I am very affraid that the SJS is
coming back. I hope that I am jumping to conclussions and that the lump is
nothing (I am an opera singer and pray that this does not affect my voice).
If you have ever heard of it returning, could you please let me know? I do not
know much about SJS, only that I had it and I almost died. It is a real shame
that it is not commenly known, and that there is not a lot of information about
it.
Thank you,
Cathy
Name :: Julie White
Email_address :: juliewhite@aol.com
Story :: It was either an IVIG treatment or a miracle through prayer that stopped
SJS in its tracks.
Our 9 year old son, Sam, developed SJS almost immediately after talking an
antibiotic on a Friday afternoon. His lips began swelling almost immediately.
Call to doctor's office said not to worry, give him benadryl. By the next
morning, he was much worse. A trip to the doctor's office gave us a diagnosis
of herpes stomatitis because of the numerous sores in his mouth. Throughout
Saturday, he got progressively worse. We made numerous calls to doctor's
office, they said herpes stomatitis is bad, it will get worse before it gets
better. All he could do was lay in the bed.
By Sunday morning, we were talking directly with the doctor, who still never
thought about SJS. By Sunday afternoon, we noticed his eyes were swelling.
That's when we took him to our local Children's Hospital. He was admitted
immediately.
The next morning, our pediatrician came in to see him, and was STILL calling it
herpes stomatitis. A nurse pulled her to the side and suggested SJS (there were
two other children there with serious burns in the burn unit for SJS). Our
doctor then examined Sam's body and immediately got on the phone to the
infectious disease doctor. If it had not been for that nurse, his diagnosis
would have been delayed which could have had serious consequences.
By that night (Monday), Sam received a large IVIG treatment. He was in serious
pain, his skin was being affected, lips/mouth were black, eyes crusted. By
Tuesday morning, his symptoms had not progressed, he was on the road to
recovery!
So it was either the IVIG or a miracle.
After a few days in the hospital, Sam returned home. He missed a month of
school, but caught up quickly. He had no long term damage, except for a little
scarring on his lips. So far, his eye sight seems fine.
He is now 12, and with all this recent publicity about SJS, I wish we had
created public awareness three years ago, maybe some children's lives could have
been saved.
It is a scary, horrible disease.
Sam was treated at Children's Hospital in Birmingham, Alabama. I think there
should be more awareness about IVIG, because it could be what saved Sam's life.
Name :: ALISA WALKER
Email_address :: walkersupply1@aol.com
Story :: HELLO, I'M A 29 YR OLD SJS VETIM , I BET I'VE LOOKED AT THIS SITE A
MILLION TIMES OVER THE YEARS JUST TO SEE IF ANYONE OUTTHERE HAS FOUND SOMETHING
NEW. I'VE HAD CASES OF SJS SINCE I WAS THE AGE OF 12 BUT BACK THEN DRS ACTED OR
MADE ME FEEL LIKE I HAD A PLEG. OR HERPES. OVER THE YEARS THEY LEARN A LITTLE
MORE AND MORE I'VE BEEN HOSPITALIZE 4 TIMES IN MY LIFE FOR SJS. MOST RECENTLY
FROM FEB 2 05 TO FEB 9 05 HERE IN MEMPHIS TN, TODAY AT MY KICTHEN TABLE, I OVER
HEARD A COMMERICAL ON TV ABOUT A CLASS ACTION LAWSUIT, THE ONLY THING I COULD
DO, IS SET THERE A CRY, I WAS JUST THINKING OF ALL MY YEARS OF SUFFERING, THAT
WAS THE FIRST TIME I'VE EVER HEARD THE NAME STEVENS JOHNSON ON ANYTHING MUCH
LESS THE TV. I WAS RELEIVED I DON'T KNOW ANYTHING ABOUT THE LAWSUIT. MY DOCTORS OVER THE YEARS HAVE STARTED AND STOPPED SO MANY MEDICINES. THIS IS THE FIRST
TIME I'VE EVER WROTE ANYONE ABOUT MY CASE OUTSIDE OF MY FAMILY BUT MY BODY IS GETTING TIRED. AND SOMEONE HAS GOT TO FIND A CURE.. SOON. THANK YOU FOR
LISTING ALISA
Name :: Kathie
Email_address :: wrytter@aol.com
Story :: My story is not a nightmare story as many people have experienced. But I have seen no information on what to do if you have my experience so I am hoping someone can offer advice.
I had spine surgery a year ago and my body was flushed with a high dose of
antibiotics. Those caused thrush and yeast to recur almost every month. In
between treating the thrush and yeast caused weird bacterial stuff to happen,
because I was so dopeleted of "good bacteria" after the surgery. So was going
back and forth bewteen antibiotic and anti-fungal remedies.
In November I took Diflucan for the yeast, and broke out in a red raised rash
that saddled my nose. The same thing happened in December. This month, my doc
tried a 200 mg dose of diflucan for thrush, followed by 100 mg doses that I was
supposed to take for 14 days. But the 200 mg dose made me break out in raised
red burn-like blotches on my face and neck. My doc said to keep taking it a few
days but stop if the spots started to look like blisters. By day three they
looked like they were blisters with water under them, so I stopped the med. Now
the spots are flat again but feel just like skin that's been burned touching a
hot oven. Also, I've had trouble with my eyes burning, and inflamed taste buds.
but it's improved since I stopped the meds. My doc said it was good I stopped
because she thought my reaction might be SJS.
Now that I have read up on it on your site, it scares me. Will these symptoms
I have now disappear since we stopped the meds? Could they get worse? Can I
ever take diflucan again or will I have the same or worse reaction?
Thanks to anyone with info on what happens if you experience these limited,
milder symptoms.
Name :: Kim Moore
Email_address :: Kimmoor@aol.com
Story :: I have suffered from fibromyalgia for several years as a result of 3 car
accidents with in a year and a half. I have been seeing a rheumatologist for
this condition and in Sept of 2003 he suggested I try Zonegran which is a
sulfadamide. After being on the drug for about 2 weeks, one night I noticed
that my lips were blistering and my eyes felt like I had sand in them. By the
next morning my face and eyes were very swollen and I went to see my primary
doc, who said I was having an allergic reaction and suggested benadryl and a
medrol dose pack. By the following day I had a rash that covered my entire body
and my mouth and throat were swollen and so painful I could not eat. I began to
run a fever, and despite taking benadryl like they were tic tacs my rash never
changed. I read the insert for the Zonegran and found that it caused Stevens
Johnson Syndrome, and not knowing what that was had my mom research it on the
internet for me. She called back in 10 minutes and demanded I get to the ER as
soon as possible as I had many of the symptoms and this was a life threatening
illness. By this time my feet were so swollen I could not walk, so I didn't
want to go anywhere, but my husband carried me to the car and we went to the ER.
They had no idea what was going on, but admitted me. I saw an ID doc that night
who thought it was a systemic herpes infection and I was put on iv antiviral
meds. My body continued to blister everywhere, and my feet were so swollen and
painful I thought they were going to burst open. After 2 days in the hospital I
was seen by a Dermatologist who did a biopsy of one of the lesionsand made the
diagnosis of SJS. My Rheumatologist, concerned stopped by to see me and
immediately ordered a consult by an opthamologist. I was put on 3 different
steriod eye meds, and by the next day I could see, I have read many stories
about SJS and I am convinced that my Rhematolgist's suggestion saved my sight.
After the 4th day in the hospital my white count dropped so low, the doctors
were concerned any infection would definately be life threatening. My hospital
stay was 9 days. When I was discharged I still could not walk, as my feet were
one giant blister. The skin on my face, feet and arms all sloughed off, the
Dermatologist said it was the same as a chemical peel. The strangest thing,
though happened 2 weeks after being discharged from the hospital, I have
suffered from infertility my whole life, I am 42 and have 2 children, but it
took years of medication and artificial insemination to get pregnant. However,
something about my SJS episode made me fertile and I found out 2 months after
my reaction that I was pregnant, and had gotten that way 2 wks after discharge.
Being very concerned about what the SJS could or would do to a growing fetus I
saw several doctors, but no one knew enough about the condition to know. The
good news is, I gave birth to a healthy baby girl 7 months ago, and although I
never expected to be a mom again, it was a blessing after such a terrible
ordeal.
I still have problems with my eyes being dry, and hearburn which I believe is
related. My skin on my arms, back and legs are scarred. But I do feel
fortu some people don't.
Name :: Ruth P. Serquiña
Story :: I am from Iligan City, Philippines.
On March 1,1997, my 6-yr old daughter Brice was having cough and fever, she was
given Trizole by her doctor. After the first dose, her eyes became bloody red
but later they were back to normal. However, she experienced vomiting and her
fever rose to 40+C. After 4 days, we thought she had measles. By the 5th day,
her lips were blue and the rashes turned dark. We admitted her to the hospital.
She was having blisters all over her body. The doctors were confused and later
one doctor diagnosed her as having SJS. We took her to St.Lukes hospital in
Manila. There she was diagnosed as having Lyell's Syndrome or Toxic Epidermal
Necrolysis. She was taken to the Pedia Intensive Care Unit in the reverse
Isolation room. It was devastating on our part because we were not only
experiencing financial crisis but emotional crisis as well. We could not
comfort her because she was bleeding all over her body. She was hysterical and
sleepless all the time. I could not bear her cries. What was so painful was
that the doctor who prescribed the medicine did not acknowledge her error. We
were hopeless since the attending doctors in St.LUke did not give us a clear
assurance that she could survive. I was told that she was in a critical
condition. We stayed in that hospital for 1 month and 1 week. She survived the
ordeal and our family and friends help us in paying the hospital bill.We are so
grateful to God. Through that situation, we, as a family, were able to
establish a personal relationship with God. Now, my child is 14 yrs old and she
is very couragous. She is a risk-taker and her tolerance level for pain is
impressive. In addition, we all have an assurance of God's eternal love.
Name :: E. Sebire
Email_address :: Lomiming@aol.com
Story :: To Whom it may concern,
If you are gathering data regarding allergic reactions to Children's Motrin, I can provide you with information on my daughter.
My daughter is now 5 years old, however, when she was approximately 8 mos. old,
I gave her Chilren's Motrin one evening and she awoke the following morning with swelling in her face, rash on her body, and difficulty breathing. I took her to the emmergency room right away and she was diagnosed with an allergic reaction to Motrin.
Fortunately, she is fine and has never been given Motrin again.
On CNN this morning, they interviewed a child and her mother. They were
discussing SJS and how the child developed it from Children's Motrin.
This was the FIRST TIME I had ever heard of anyone ELSE other than my daughter having an allergic reaction to Motrin.
If I can provide you with any information or documentation on this happening to
my child, please let me know.
I'm grateful for your web site and the information it provides.
Sincerely,
E. Sebire
Name :: Armando
Story :: I was diagnosed with a bacterial infection on my skin - minor infection
that is. I was prescribed Sulfameth/Trimeth to help my antibodies. For some
reason I was just paranoid about the drug after day one and reading the side
effects. I got a fever after a few days but it was a wierd fever. I took my
temp and it read 101 max at some point, however, I was not in a situation where
I just wanted to lay down in bed. I still felt like I could play around and do
anythink just like before. The think is that i didnt because I knew I would
overheat. I also never really had a loss of appetite hovever. At day 8, I got
red bumps on my chest and arms with a rash on my face under my ears (no
itching). I saw the doctor again and have stopped the medication. The
medication was still working to fight my bacteria as odd as that may sound.
After my medication died down I was looking better. I was constantly playing so
that I would't get SJS and I never did. I believe that I had a good chance at
this terrible symptom but God did not let me get it. I am a Christian and want
everyone to follow in his steps as God can heal and prevent SJS from happening.
Name :: Larry J.
Email_address :: lslajohn@pldi.net
Story :: I was 13 years old in 1969, when a dose of penicillin began my SJS
experience. Two days following the shot of penicillin, I was laying in a
hospital bed with a fever of 108. By the 5th day, I was transferred to Yale-New
Haven Medical Center, where I stayed for five weeks. I had blistered all over,
and most severely in my mouth and eyes. the fluid from my right eye literally
perked through my cornea, causing severe scaring and adhesions. My skin, mouth,
and other areas healed OK, but my eyes have always continued to have constant
irritation , tears, and photosensitivity. Also, my nail beds were destroyed,
leaving very disfigured fingernails. I have had numerous eye surgeries,
including mucous membrane transplants to the inner eye lids. With the FDA's
approval of soft contact lenses in the mid 1970's, I began a life of much more
comfort. No vision to speak of in my right eye, but adequate vision in my left
that by 16 I had my driver's license. I completed college, married, and had two
lovely daughters. SJS did not limit my life, just made it inconvenient at
times. We sued no one. There were no reoccurences and no indication of SJS in
other family members. If you have SJS, hang in there!
Name :: Jill Van Alstyne
Story :: Our child was not diagnosed with Stevens Johnson Syndrome and it is
quite possible that he did not have that. But I want to tell our story because
he did have an allergic reaction to amoxycillin and it may have been an early
stage of Stevens Johnson syndrome.
Our five-year-old son had ear infections in January 2005. Our pediatrician
prescribed amoxycillin, which he had been given many times as an infant (he had
constant ear infections). He has never had an allergic reaction to anything
before.
We gave him one pill at 8 p.m. and another at 8 a.m. the next day. By 5 p.m. we
noticed his right eye had turned red and was bothering him a lot. (He kept
rubbing it.) We gave him cool, wet rags and figured he had pink eye from a
bacterial infection. We thought the amoxycillin (an antibiotic) would actually
help that. I gave him another pill at 8 p.m.
The strange thing is that his left eye quickly turned red also by then. I've had
pink eye before, and it usually stayed in one eye or traveled to the other eye
in a day or two. And pink eye always was accompanied by pus/crust. Our son had
no pus. But now both eyes were really red and he was rubbing them terribly and
said they hurt.
As we were going to bed that night a thought came to me: one of my students
went blind from an allergic reaction to a medicine. This happened when she was
small, and she is now in high school. I thought, "Maybe that's what's happening
to our son?" I called the doctor on call, and she said to give him Benadryl. I
did. It helped a lot--he was able to sleep for four hours, but woke up rubbing
his eyes terribly again. I gave him another Benadryl and called the doctor
again. She thought it was conjunctivitis (infectious, I suppose). Of course, I
watched him all night to see if he was having breathing difficulties or
developing any rashes. I carefully read the warning papers that came with the
amoxycillin. Only in one place did it list anything about eyes--"eye swelling."
Our son's eyes were not very swollen at all, but he had developed these strange
red circles beneath both eyes.
When he woke up in the morning, it was clear to my husband and I that this was
not pink eye. He had red circles on the skin above both eyes, red eyes on the
white part of the eye, and red circles on the skin below both eyes. The
below-part was starting down into his cheeks, like a rash. His eyes were bugging
him a lot. He didn't call it itching, he called it hurting. One time he
described it as "poking" him.
We brought him back to our pediatrician, who confirmed the allergic reaction to
penicillin. But our boy never did develop a rash anywhere else, or a fever, or
any other symptom. I think that is because we caught it early on and stopped
the amoxycillin after just 3 pills.
We thought the symptoms would go away in 24 hours, but his eyes stayed red and
bothered him for 8 days!! They did get better gradually, but it was very
worrisome. Three times he said things looked "foggy" and that he couldn't see
very well. We hauled him to the ER on that night (a couple nights later) but
that doc wanted to give him an antibiotic eyedrop (just what we needed--more
antibiotics!) We said no.
An urgent care doc confirmed the allergic reaction diagnosis and believed us. He
also said the "cobblestoning" in the lower lid was an indicator of an allergic
reaction. But an opthalmologist and an allergist both thought it was a viral
conjunctivitis. (Of course, they saw his eyes one week later when the rash and
skin redness were gone and just the eyeballs were irritated.) I felt like they
didn't believe us.
Our son continued to rub his eyes, especially at night and even during his sleep
through mid-February. It is now Feb. 20, and he seems to have gotten over this.
We are thankful. I just want to make sure that there is no eye damage that has
occurred or might still occur. I wonder if there is something else we should do
to be sure he is okay and no eye damage develops.
Plus, I wanted to share this story because I think it could happen to other
kids/parents who don't have the knowledge I have. After this happened to my son,
my student shared her story with me about having Stevens Johnson syndrome and
she had a horrible time. It was not diagnosed immediately. As I said, she is
completely blind as a result. This happened to her at age 4 after taking
amoxycillin. Like our son, she had taken it many times before due to ear
infections.
Name :: Linda A. Bergeron
Email_address :: lavab747@yahoo.com
Story :: After three trips to the emergency room and several injections and
prescriptions of cortisone, "my hypersensitivity reaction" couldnot betolerated
anymore. I was having difficulty breathing, my body was inundated with blisters
and crawling purplish targets my skin was ablaze from head to toe with
uncontrollable itching. This time I was hospitalized. I was severely
dehydrated. They were determined to draw blood, a very slow and arduous process
producing the blackest blood I had ever seen. This IV didn't last long as it
infiltrated and I ultimately had to have a central line put in. They pushed
solumedral, benadryl, and valium. Can't remember what else. I remained
hospitalized for 8 days while they symptoms abated. The palms of my hands,
soles of my feet were visually pierced with a purple scar. My skin was
hypersensitive for months following, I lost my hair and deep scar lines in the
bed of my nails developed as I recovered. Weaning from the steroids was very
difficult as the symptoms waxed and waned so did the steroids. This left me
very depressed and anxious. My heart raced, my blood pressure sored and I was
swollen for months. The year following this episode I had pneumonia,
exacerbated hormonal problems ending with a hysterectomy due to uterine cysts, a
left coronary stent and OSA with a CPAP mahine. These were probably non related
but this was certainly a year of health problems. This is a brief exerpt of a
list of symptoms and maladies occuring since SJS.
Name :: AJ SPRADLIN
Email_address :: DANAJSPR@YAHOO.COM
Story :: Your email address is not working, so, this site has been used. It is
most fortunate that your site exists! The prescription of vioxx has been used
for over 5 years until recently the physician switched me to Bextra. There were
no side effects, however, an additional medication has been prescribed of
lamictal. There is a warning on the information sheet that accompanies the
medication as well as the doctor informing me of the Stevens-Johnson syndrome.
The doctor simply stated, "if you notice a rash, call me." Since there are two
medications that would be ingested that could cause this disease, a search began
before using the latter. This search has resulted in finding your site. I
recently learned of my allergy to morphine and its sister. The allery to the
new medication could cause lasting effects. Thanks for your informative site.
AJ Spradlin
Name :: Candy Harrison
Email_address :: charriso@iwon.com
Story :: I sent this letter to a local Dallas, Texas newspaper in hope of having
the below Doctors recognized. Unfortunately, they did not recive the award.
After reading the February 8, 2005 Wall Street Journal I thought I would share
this with your foundation.
June 22, 2004
Ms. Glanda Vosburgh
Dallas Business Journal
12801 N. Central Expressway
Suite 800
Dallas, TX 75243
Dear Ms. Vosburgh,
Acute Kids Care in Frisco, Texas should be the 2004 recipient of the Community
Outreach Award honoring people and their organizations for developing a program
that has improved the quality of pediatric medical services in the City of
Frisco.
John Myers, M.D., F.A.C.E.P., F.A.A.P. and Gary Gerlacher, M.D., F.A.A.P.,
founders of Acute Kids Care, along with partner Kerry Johnson, M.D., F.A.C.E.P.,
F.A.A.P., should be recognized for their successful vision to provide
comprehensive pediatric urgent care services.
Unlike most pediatrician’s offices, they are open Monday through Friday 5pm
until midnight, Saturday and Sunday noon until 8pm and holidays! For working
parents, like myself, they truly deserve all the recognition and thanks they can
get from the community.
On April 13, 2003, Dr. Myers became my hero. My, then, 8-month-old son became
ill. It was Sunday evening. I had my pediatrician paged. He referred me to this
“new” pediatric urgent care center where they could treat, what we thought was,
dehydration. Unlike most urgent care centers or emergency rooms, we were seen
immediately. Dr. Myers took one look at my son and said we were going to the ER
at Medical City. He calmly explained to me that my child had Stevens-Johnson
Syndrome and erythema multiforme. “What is all of that?” I asked. He printed
out information for me, told me he would call Dr. Gerlacher, who was on call in
the ER at Medical City, and they would be waiting for us. In short, he saved my
child’s life!
I could bake dozens of cookies and send thousands of thank you notes, but what
better way to honor the doctors who care about their patients, and professions,
then by nominating them for this prestigious award!
I have included testimonials from the companies website from other parents who
have also had exemplary medical care provided to their children by the
professionals at Acute Kids Care. I congratulate the Dallas Business Journal for
sponsoring the 2004 Health Care Heroes Awards and look forward to seeing the
results!
Most sincerely,
Candy Harrison
Name :: mark angelov
Email_address :: markmang5@yahoo.com
Story :: I had flue-like symptoms with high fever for a week. Just as I got
better, on day 8, I woke up with bloody blisters on the inside of my cheeks and
under my tongue. Luckily, the doctor diagnozed it correctly that afternoon.
Also luckily for me, I never developed any skin lesions... I had extensive
lesions in my mouth, throat , nose, eyes, esophagus, trachea and urethra. 2
days later I was unable to swallow even liquids. I developed a corneal abrasion
in my left eye that caused severe pain for several days.
The doctors were wonderful, and I was lucky. It's now been 3 weeks, and I am
recovering quickly. As horrible an experience as it was, I survived w/o any
long-term consequences, although the vision in one eye will take a little while
to come back.
The second most important thing throughout the ordeal was pain management using
Magic Mouthwash (benadril/malox/lidocaine), 2% lidocaine, and lots of percocet.
The most important thing was unwavering support from my loved ones. They helped
me pull through.
Name :: Linda
Story :: My seven year old son was taking a sulpha antibiotic for a staph
infection when he developed Stevens-Johnsons Syndrome last year. Of course,
at the time I had never heard of SJS. Jeremy and his twin brother were getting
ready to start second grade, and I was worried that he was going to miss the
first day of school. Little did I know he would miss the first six weeks.
I couldn't understand what was causing his disparate symptoms: swollen face and
lips, red irritated eyes that were sensitive to light, fever and nausea. Our
pediatrician didn't recognize the syndrome right away, but as soon as Jeremy
began to develop lesions, he figured it out. We were lucky to have an early
diagnosis. Jeremy was admitted to our local Children's Hospital and placed on
IV steroids, a practice I now know is somewhat discredited. At the time,
though, I still didn't know the extent of what we were dealing with. Within two
days his skin was blistered and he was unable to open his eyes. When the
opthalmologist was summoned and had to pry his eyes open with glass rods, his
screams could be heard all over the floor. By this time, although the doctors
had really told us very little, my husband and I had read up on SJS on the
internet, and we were terrified. The idea that Jeremy could be blinded, or
even die, was the worst thing we could have imagined.
Jeremy was moved to the pediatric ICU where he spent the next ten days. The
doctors there were more familiar with SJS and took him off the steriods. When
his breathing became more labored from the tissues sloughing off his in airway,
he was intubated and put on a respirator. As hard as it was to watch this
happen to him, it meant that he was unaware when the medical staff pried his
eyes open every two hours for treatment, so it was really a blessing. His face
was blistered beyond recognition. With all of the monitors, tubes and apparatus
attached to him, we could hardly find our little boy in that big hospital bed.
We kept his photograph at the bedside to remind us of what he really looked
like.
We consulted with plastic surgeons, dermatologists, infectious disease
specialists, and seemingly every other imaginable specialty. From the internet
my husband learned about IV immunoglobulin therapy and mentioned it to the
doctors. They agreed it was worth a try, and it seemed to have helped Jeremy.
As the drug reaction peaked, he finally began to overbreathe the respirator and
we were able to take him off. although he continued to require significant
respiratory therapy. He had to undergo physical therapy to regain strength to
walk. Three weeks after his admission, we were finally able to bring him home,
and after three more weeks, he went back to school. We made one return visit to
the hospital to undergo cryotherapy on his eyelashes, which had turned inward
due to the scarring from SJS. The lashes were poking him and causing corneal
abrasions. Another procedure is planned to remove additional scar tissue from
his eyes.
Today, some six months later, Jeremy is doing well. His skin continues to heal
and his eyesight is good. He still has eye irritation from the scar tissue in
his eyes, but things could have been much, much worse, and we are grateful for
such a good outcome.
It is our hope that by contributing our story, parents will become more aware of
the warning signs of SJS. A prompt diagnosis and quick intervention probably
saved our son's eyesight.
Name :: Mike Mohr
Story :: I have experienced increasing moderate to severe chronic back pain for
approx. 20 years. In the very early part of year 2000, I began taking 800 mg of
Ibuprofin four to six times a day, mostly as an anti-inflammatory. Not much
actually helps the pain.
In late summer of 2000 I began to develop lesions and pustules which spread in
bands, clumps and stripes on my chest, breasts, shoulders and neck. Within a
couple years they had spread to both arms, shoulder to wrist.
Needless to say, itching and scratching was no help and complicated things
amazingly.
I had originally attributed this to the effects of moderate sun exposure and to
the fact that ( in Jan 1998 ) I had acquired and Iguana. I supposed I had some
odd reptile-related infection or mites, which may or may not have complicated
both the malady and my ability to determine a cause and a course of action.
Around mid-December of 2004, I ceased taking Ibuprofin altogether and within
five or six weeks there was noticeable improvement - outbreaks ceased the the
present batch of lesions began to heal. I will have a stunning set of scars.
Thank you for the information related in your articles about NSAIDS in general
and as relate to Ibuprofin. I'm still allergic to doctors; now I'm allergic to
medications.
Mike Mohr
Name :: Elizabeth Gaynor
Email_address :: bethgaynor67@yahoo.com
Story :: Nine years ago I had a scheduled C-section to have my son. I was 29
years old. It was my second C, so I was prepared for the pain. When I was
offered pain meds, I asked for Tylenol since the pain was too bad. The nurses
suggested ibuprofen instead for it's anti-inflammatory properties. Within 24
hours, I developed a slight rash and heavy itching. Within 36 hours, my skin
was deep red, I was swollen and the pain and itching were unbearable. To top it
off, this rash was in my incision. The rash was from my neck to my knees. We
went straight back to the hospital (military, unfortunately) and begged to be
seen. It took perserverance, but finally they saw me. The doctor had me
disrobe, took one look and said "oh, it's an allergic reaction. Kind of strange
though...never seen anyone allergic to ibuprofen." He gave me heavy doses of
benadryl and told me never take it again for fear of death. The pain and
discomfort from this reaction, my first and only ever reaction to anything, was
unbearable. I thought I was going to die. My skin was on fire. When I heard
that some reactions cause severe burns, I wasn't surprised considering what I
felt. I am so sad to hear that this drug has such devastating effects on
children. I guess I'm a lucky one. I have no longstanding effects from the
incident. At least not that I know of. God bless you! Please continue to push
for these warnings. They are desperately needed.
Name :: Abby
Email_address :: Lolliepop21@aol.com
Story :: Hi,
My name Is Abigail Taraskus I am 19 years old. I was diagnosed with SJS
about a year ago. I had several reactions to medications I was on. First I
started getting hives all over my body and the doctors told me I was out in the
sun too much. Then I got cold sore like blisters in and around my mouth, which
the doctors thought was some type of STD and treated me for that, but that only
made the problem worse. One day while going to the bathroom I noticed a intense
burning sensation and took a peek. I was horrified there blister all over me,
the skin was peeling away. So I went to my OB/GYN who gave a 1 Diflucan pill and
some Zovarax cream which didn't really help. After pleading with my doctor she
refused to place a cathader in me. The only way for me to go to the bathroom was
to stand in the shower and let the warm water run on me while going (with my
mothers help). I was not able to eat because of the sores in my mouth and I
became weak and sick. After many outbreaks, and feeling helpless because no one
knew what was wrong with me it had gotten so bad that I went to the hospital on
my graduation night. The blisters affected my pubic region, mouth and lips, my
eyes were not affected. The OB/GYN who saw me took one look and diagnosed me on
the spot. I was on Bactrim for chronic UTI's, Celebrex, Vioxx,(For back pain),
Valtrex(because the doctors thought the blisters were Herpipatic) and
Ortho-Tricylin High. I was taken off my meds and placed on a seven day series of
steroids, which cleared the problem up. It has been a year and I have been fine.
But now I'm experiencing signs again. The doctor who diagnosed me never told me
what SJS was and my family doctor said she has never heard of it. Most of my
knowledge is due to your website and others. I came to the conclusion that it
was the Sulfa drugs,and any medicines besides Acetaminophen, and NASID's.
God Bless
Abby
Name :: Lisa
Email_address :: babydoll15074@yahoo.com
Story :: My nephew is in Pittsburghs Childrens Hospital. His name is Ian and
lives in Erie. Ian has been in Childrens for 3 weeks, after being taken to local
hospitals in Erie 2 times. It all started with bronchitus. Then a fever, and red
blisters all over. Ian is a special child. Ian has Cerebral Palsy, Epilepsy, and
Mental Retardation. The doctors feel his Epilepsy medicine along with Motrin
caused this. They had to do a Tracheotomy to let the blisters in the mouth to
heal. He has had several problems these last 3 weeks. His blood pressure would
spike along with a fever. He had a skin infection, which is healing very well,
but now his right lung lobe is not working. They feel this, along with the
blisters in his mouth could now be Herpes. They say that if it is Herpes it
could cause the outbreak of SJS all over again. I have never heard of such a
thing! I wonder if he is being used as a guinea pig because nobody really knows
what exactly happens with SJS especially in a special child with several health
problems. I myself had never heard of SJS until now. I have since pulled all the
Motrin from my cabinets. If anyone can shed a little light on this, please let
me know.
Thank You, Lisa
Name :: Sara Bachelder
Story :: I developed TEN from Bactrim prescribed for a kidney infection. I had
never had any previous adverse reaction to any medication, and had taken Bactrim
at different times in my life without problem. The kidney infection had been
particularly resistant to treatment, and treatment had been prolonged. I live
in Mexico, and my health insurance, Seguro Social (the government's socialized
medical care system), was through my employer. It's an understatement to say
that the Seguro Social medical system leaves a lot to be desired, but that's a
topic for another forum!
The first syptoms were a cluster of large but mosquito-like extremely itchy
bumps on my thigh which I noticed on my way to work in the morning and which
over the course of the eight hours I worked multiplied and spread out and
together across my thighs and down my calves.
I had taken a pill at 6 in that morning, and wasn't scheduled to take another
one until 6 pm; I didn't take it but instead went to the nearest Seguro Social
(IMSS) hospital emergency room. The doctor there had no idea what was wrong. I
asked him if it could be an allergic drug reaction, and he said it was possible,
and to stop taking whatever I'd been prescribed, and sent me home. He did say
if it were an allergic reaction, that it could get worse. What an
understatement! He said if it got worse, to come back.
In the morning, the large splotches looked more like huge bloody patches and my
legs burned and hurt terribly, and standing or walking was excruciating. I also
had the same lesions and patches on my arms. Standing or bending my legs or
arms caused intense pain that felt like a cascade of fire; it seemed like the
cells in my tissues were bursting and my blood was boiling, cascading down
within my skin, yet somehow hurt all the way down to the bone.
I went back to the hospital and was admitted. They began IV fluids, and also
administered some type of pain medication. I was monitored for one day and was
told I must force fluids and rest in bed for the next two weeks minimum, and to
stay out of the sun. That part wasn't difficult considering how much pain I was
in. The next day the lesions and the pain were even worse, and my husband
brought me back to the hospital, where the repeated the same IV and pain med
routine as before, and after a day they sent me home again. After two weeks I
attempted to return to work but couldn't bear the pain of walking, so I stayed
home another week. The pain persisted, but I managed work by sitting most of
the day. My doctor objected, but I had to return to work or risk losing my job
and I needed the income as well.
During the worst of it the bloody looking lesions grew completely together,
blanketing my legs and arms. They looked so awful for so long after, that to
hide them I had to wear long sleeves and long dresses or finally when I could
bear it, slacks. It took about a year and a half for them to fade enough to
dare to show my legs. I also had an enlarged spleen.
Three years have now passed, and all that visibly remains is slight
hyperpigmentation, which look like bruises on my legs and arms where the worst,
deepest lesions were, which darken with exposure to sunlight. Of course I must
also avoid sulfa drugs, but am very cautious and nervous about taking any type
of medication at all now.
I know so many people affected by this have had much more serious cases. I
think maybe I was just fortunate to have had it diagnosed early and had stopped
taking the Bactrim.
My prayers go out for all who are affected my SJS or TEN.
Name :: S.Cormier
Story :: Spring 1985
I was a young mother ( age 24) living in SE Ma. with two small children when I
was treated for bronchial pnemonia with antibiotics. I do not recollect the
exact medication I was prescribed, nor do I remember what other medications I
may have been on. After sitting in the park on a sunny day my face became
swollen as if I had too much sun. Hours later, all orifices, nasal, optic, oral,
vaginal and anal became swollen and ulcerated. I was taken to the emergency in
severe pain was told I had a food allergy and to take Benedryl. Hours passed
and symptoms worsened with fever and extreme pain and ulcerations, on the second
and third ER visit I was informed I had geneital herpes. ( biopsy revealed I did
not!) The doctor actually conducted a punch biopsy of the labia that resulted in
a sever loss of blood, multiple sutures to close and loss of consciousness. I
was abruptly admitted to the ICU under cap, glove and gown precauctions when my
skin started to abcess and erode. Luckily an infectious disease doctor was
called in on consult and diagnosed my condition. I nearly lost my life.
I am now a 45 yr old woman who was diagnosed with indolent non-hodgkins lymphoma
shortly thereafter. I have had 2 recurrences to date but am now well and in
remission. However, it has always bothered me that I have wondered whether the
antibodies I now posess and the trauma my body suffered at the time may have
anything to do with the onset of my cancer.
At the time, mid 1980's, many doctors had never heard of this syndrome or had
rarely seen it in a woman of my age and without the internet there was no
information available to me regarding this. I am curious to know if there are
other younger woman who may have experienced a similar episode and if they had
any long term complications, cancer or vision issues. Please respond with
knowledgable information only to the above e-mail. Thank you.
Name :: Ernest A. Waite Sr.
Email_address :: wai303@aol.com
Story :: On may 13th, 2000 I was feeling flu like symptoms when i drove myself to
the V.A.Hospital in Cleveland, Ohio. I went for x-rays and was told that i had a
slight infection and I was given the antibiotic Levofloxacin. The fisrt thing
the doctor asked me was what kind of antibiotic i would take when i have an
infection. I replied Keflex, but he said that he had a new antibiotic and that
he wasn't going to give me Keflex.
Anyways the doctor give me what he wanted which was Levofloxacin and told me to
take one a day for ten days. I started taking them right away and for the first
three days i wasn't feeling any better. Then on the 4th day i started feeling
worse the same goes for the 5th & 6th day and on the seventh day Is when all
hell broke out. On May 19th. about 8PM i started breaking out with blisters in
my mouth ,down my throat and my eyes started oozing pus. I was very sick that
night and didn't get any sleep at all and the next morning my wife and daughter
took me back to the V.A.Hospital. As soon as I walked into the emergency room
the nurse right away found a room for me and then about four to five doctors
started gathering around me guessing at what they think i had, I heard SJS,
Bechet's disease, crohns, and a few others.
While I was laying in bed all of a sudden my penis and scrotum started burning
very bad and all i could do was scream. Soon after that i was admitted to ward
44 for a series of tests and to determine what it was that i had. After spending
23 days in the hospital and going back and forth to the hospital for more test
my primary doctor diagnosed me with Behcet's Disease in September 2000. In
August of 2000 I had an implanted morphine pump put into my abdoman to relieve
the terribly burning pain that i was left with in my penis, my mouth feels like
a flame thrower always burning and i am now on oxycodone for the burning pain in
my mouth.
I have been on the morphine pump almost 5 yrs. and if not for that I would have
probably done something stupid. The pain gets so unbearable at times. Now
getting back to my diagnoses, the same doctor that diagnosed me with Behcet's
disease now says that i never had Behcet's and that it was SJS, only after
treating for Behcet's for 4yrs. now retracts the Behcet's Disease. I have to go
the V.A.Hospital every month to get my pump filled and my other meds. I Can no
longer do anything that requires bending over or lifting, I am always in pain
everyday but i started using the computer to keep my mind off this burning pain
that has been haunting me for the past five years. There is no cure for burned
nerve ending in my mouth and penis. "Watch what medication you Take because
what could cure you can also KILL YOU"
Name :: ReneeSerrano
Email_address :: ReneeSerrano18@hotmail.com
Story :: Hi my name is Renee iam a 32 yr old female survivor of sjs. Well i dont
even know where to begin. I was out with a friend at dinner after awhile my eyes
began to itch uncontrollably and i also noticed that they were getting red a
large amount of mucus keep building up even though i keep wiping them with a
kleenex. By the time we reached home my eyes were completely blood shot red and
swollen like two baseballs. The first thing i thought it must have been
something i ate at the resturaunt. So basically i just got some visine drops and
some benadryl from the local drug store and went to bed. The next morning i woke
up my body was aching all over my eyes were stuck together from the mucus
buildup and my lips were sore and burning. I preceeded to the bathroom to look
at myself in the mirror to see what was going on. I was not prepared for what i
saw my face was red and full of blotches and my face was swollen like a
basketball but i had no fever i just felt weak. I then got on the phone and
called my allergist and explained to her what was happening and she told me to
come in that aftrenoon. When i got to her office she took a look at me and said
you had a allergic reaction to something and prescribed some predisone for me
which is a steroid. She also preceeded to ask me had i ate anything different at
dinner that i normally dont eat my answer was no she next asked had i used any
new detergent or soap or cosmectics on my face again my answer was no. She than
gave me a appointment to come back that monday this was on a friday so she could
do some allergy testing on me and see if we could figure out where the reaction
came from. So i took my prescription and went on my way i had it filled and took
my first dose and went about my normal activity. Later that night i started
feeling really horrible my lips swelled even more and by this time a had a
slight fever. I decided to go to the E.R. Once i got there they also said i had
a allergic reaction and gave me IV benadryl for the itching and A double dose of
IV steroids and sent me home. They did not give me another prescription cause i
had told them i already had one from seeing the doctor earlier that day. I came
home and went to bed. The next day i felt so bad i could not even get out of
bed. My phone had rung quite a few times but i was just to weak to get up to
answer it i couldnt even move to go to the bathroom. I had chills even though i
had two quilts on by then i knew i had a fever. I just figured i lay there and
sweat it out. I fell back to sleep the next thing i know i wake up and its night
time i had sleep the whole day away. Shortly after i woke up i heard my door
open and then heard the voice of my mother calling to me. I was so weak i could
hardly answer. She then walked into my bedroom frantic sayin are you alright ive
been calling you all day and you have not been answering your phone. Before i
could answer she asked me whats wrong with your face. I began to tell her what
happen. She asked me if i wanted her to take me back to the emergency room but i
said no. Well her response was you cant just lay there like that so she got on
the phone and called my general doctor. She explained to him what was goin on .
My doctor told her not to leave me alone and to take me to her house and
monitior me and if my temperature gets higher or i swell anymore or get short of
breath take me to the E.R. I dont even remeber getting dress to go to my mothers
let alone the E.R. The doctor keet calling to check up on me at my mothers to
see how i was and he told her to keep asking if i could breath or not i was
getting frustrated by this time cause all i wanted to do is sleep and my mother
kept waking me to see if i was feeling any worse or better. Finally in the
middle of the night im not even sure what time i was again woken up but this
time it was by EMS workers. My mother had decided to get up in check up on me in
the middle of the night she said she just had a gut feeling something was not
right. She was surely right about that she said when she turned on the light she
couldnt believe her eyes. She was in shock she had never seen anyones face swell
to the size mines did and i was still sleep but gasping for air as if i could
not breathe . She called 911 and the next thing i know they were by the bed
asking me if i could breathe and i said yes . They took me to Alberteinstein
Hospital which is about 5-7 mins from my house . I rembember going in on a
strectcher and all these nurse and doctors all around me sticking tubes here and
there taking blood, temprature, blod pressure you name it they were doing it .
The last thing my chest felt tight and i could not breathe and i heard the
doctor yelling her throat is closing and everything else is blank to me. All i
know i woke up 3 days later not knowing where i was and in extreme pain and
could not see. I was scared and confused. After being there about a week i was
transfered to Jacobi Burn Unit Medical Center, where i stayed for about 2
months. Basically the whole time i was there i didnt know what was going on. I
was so drugged up on morphine for the pain i basically slept those two months
away. Finally when i was well enough to be alert but for only short periods at a
time i was horrified cause i could not see. Half the people who came to see me i
dont even remember coming.
So thats pretty much how sjs started for me that was just the beginning. I
couldnt eat for about three months i was feed through a feeding tube. I couldnt
talk do to the sores in my mouth. I had blisters and sores from head to toe.
Even in my vaginal and anal area, my skin came completely off i was shedding
like a snake. My toe nails and finger nails also came off and till this day have
not completely grown back, my eyebrows and eyelashes came off it was all so
puzzling to me. Especially when they couldnt answer what caused it at least not
at the time later on down the road they figured it out. I had surgery 2 weeks
prior to this reaction taken place. At the time of surgery i was given IV
contrast and penicillin which are both sulfur drugs. They are convinced thats
what cause this to happen . But till this day they are not sure whether it was
the IV contrast or penicillan or both. This all took place February 2003 until i
can teven remember the exact date i came home. Even though iam home and iam told
i extremely licky to be alive and have regained my site i still have alot of
side affects do to this. Like i said i regained my eye sight back after about a
monthe before i left the hospital, but i have promblems seeing sometimes things
get blury and i really have to focus on whatever im looking at and my eyes
comstantly tear they run for no reason there isnt a day that goes by that when
im wlaking in the street someone stop me and ask if im ok because they think iam
crying but in fact my eyes are just tearing . I also still have some liasions
inside my mouth and toungue and it has mad it very hard for me to eat spicy
foods or anything that to cold like icecream it bothers me. My hair finally grew
back in for i was bald. So im thankful for all of that. The only thing iam still
depressed about is my skin the 3rd degree burns it caused to my skin has yet
gone back to the way it was, and its not just one part of my body its my entire
body. And since im so light it does not make matters any better its very
noticable. I have been to demeratalogist had all types of creams prescribed ,
had all different types of home remedy coca butter, aloe vera, vitiamin e
capsules, shea butter various lotions and creams you name it ive tried it but
its been 2 years and my skin hasnt cleared up yet. I dont know maybe it never
will but docotrs keepin tellin it takes time some people longer than others and
then again it may clear up but never the way my skin was before the reaction. So
i guess i have to be patient and hopefully it will clear up totally or accept
the fact it might not and just be thankfull i survived because alot of people
who do have a sjs or 10 reaction dont survive. So to all who have suffered or
know someone who has suffered dont complain about what it has done to you or
your loved one just be thankful that you or your loved one made it through and
still have each other. Thanks for hearing my story.
