[Info] Stevens-Johnson syndrome

[PhylisFeinerJohnson]

According to the Mayo Clinic: Stevens-Johnson syndrome is a rare, serious condition, thought to be caused by a disorder of your immune system.

Often, signs of Stevens-Johnson syndrome begin with flu-like symptoms, followed by a painful red or purplish rash that spread or blisters, eventually causing the top layer of your skin to die and shed.

Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications.

Signs and symptoms of Stevens-Johnson syndrome include: Facial swelling...
tongue swelling…hives…skin pain…a red or purple skin rash that spreads within hours to days…as well as blisters on your skin and mucous membranes, especially in your mouth, nose and eyes…and shedding of your skin.

If you have Stevens-Johnson syndrome, several days before the rash develops, you may experience: fever…sore throat…cough…and burning eyes.

Stevens-Johnson syndrome requires immediate medical attention. Seek emergency medical care if you experience any of the following signs or symptoms: Unexplained widespread skin pain…facial swelling…blisters on your skin and mucous membranes…hives…tongue swelling…a red or purple skin rash that spreads…or shedding of your skin.

The exact cause of Stevens-Johnson syndrome can't always be identified. Usually, the condition is an allergic reaction in response to medication, infection or illness. Anticonvulsants like Lamictal and Dilanton can be the culprits which means that complete withdrawal is necessary.

Possible complications of Stevens-Johnson syndrome include: A secondary skin infection, which can potentially become a life-threatening condition such as sepsis…eye problems…damage to internal organs…and permanent skin damage.

Because it's difficult to determine exactly which drug may be causing the problem, your doctor may recommend that you stop taking all nonessential medications. And there are no standard recommendations for treating Stevens-Johnson syndrome.

When a large area of your body is affected, skin grafting — removing skin from one area of your body and attaching it to another — may be necessary to help you heal. But, this treatment is only rarely required.

If the underlying cause of Stevens-Johnson syndrome can be eliminated and the skin reaction stopped, your skin may begin to grow again within several days. In severe cases, full recovery may take several months.

It's difficult to prevent an initial attack of Stevens-Johnson syndrome because the trigger is unknown. However, if you've Stevens-Johnson syndrome once, and your doctor determined that it was caused by medication, be sure to avoid that medication and others in the same class to prevent another attack.

Reference: Mayo Clinic

[skillefer]

In addition, asian patients should be tested before being placed on Dilanton due to Stevens Johnson Syndrome and a higher likelihood of allergic reaction according to researchers.

[PhylisFeinerJohnson]

Oh swell, a DOUBLE curse! Sigh.

[skillefer]

LOL...yup. But stop and think...asians usually have an easier time digesting alcohol. Supposedly this is due to something in the DNA that allows for an easier breakdown of alcohol with little to no hangover. Might explain the stereotype of the asian businessman making business deals over lots of drinks. Koreans are said to "glow" when they are drinking heavy.

[PhylisFeinerJohnson]

Well, at least THAT part is a good deal!

[Ruth]

Thank you Phylis for explaining Stevens-Johnson Syndrome, SJS. I had it when I was 6 years old. I was on Dilantlin. Chicken pox was going around at the time. I was misdiangnoused because of it. I had a severe rash on my skin. The epidermis was separating from my dermis. The rash on my skin turned to blisters. Then they broke open and my skin was peeling away.

When that happended, my mother took me to Childrens Hospital in San Francisco. I was immediately taken off of the Dilantin. As my skin kept coming off, my parents were told that I was going to die and to prepare for my funeral.

Childrens Hospital kept putting wet bandages all over me. I do not know what treatment I was being given. I suppose it was antibiotics. I do not know for certain. My parents would only visit me when i had the bandages on. i must have looked awful since my skin was going away. I eventually healed. I did not look the same again. I did not know that I was suppose to die.

My doctors asked me for permission to be seen by interns and have it shown and explained to them. I said all right. They got an education on SJS.

Two years ago my neurologist told me that I had it again from Tegretol XR. I have a rash that is spreading now. i can see my tendons on my left and right hand. My skin is going away there. i also have the blisters again.

I called up my GP and my neurologist yesterday. My GP was in a panic about what she saw. I am going to be referred to a dermatologist. I want to be sent to UCSF or UCLA for a diagnose. My neurologist said that it is just my tendons he could see and not to worry about it. I can see 6 inches of my tendons now. Each day I can see more tendon.

My GP told me yesterday that it can go away and come back again. Just like epilepsy can go into remission and can come back again, it is the same with SJS. I will keep everybody posted about my condition.

[PhylisFeinerJohnson]

He actually said: "it's just your tendons you can see, don't worry about it?" What if HE was looking at 6" of HIS tendons???

[Meetz1064]

your neurologist need to have HIS head examined, Ruth. Good grief!! What doctor says THAT?!?!?! *shaking head* I would've.......oh, never mind, I'll shut my mouth now.

[skillefer]

You think that's bad Meetz? My baby spent it's first week at a different hospital then me. After I was released from the hospital, my hubby and I went straight to the other hospital to see out daughter. The nurse there, in the NICU, said, "I know your daughter better then you..." Not the thing to say to a new mom.

[Ruth]

Often, signs of Stevens-Johnson syndrome begin with flu-like symptoms, followed by a painful red or purplish rash that spread or blisters, eventually causing the top layer of your skin to die.

Signs and symptoms of Stevens-Johnson syndrome include: Facial swelling...
tongue swelling…hives…skin pain…a red or purple skin rash that spreads within hours to days…as well as blisters on your skin and mucous membranes, especially in your mouth, nose and eyes…and shedding of your skin.

If you have Stevens-Johnson syndrome, several days before the rash develops, you may experience: fever…sore throat…cough…and burning eyes.

The exact cause of Stevens-Johnson syndrome can't always be identified. Usually, the condition is an allergic reaction in response to medication, infection or illness. Anticonvulsants like Lamictal and Dilanton can be the culprits which means that complete withdrawal is necessay.
Reference: Mayo Clinic

I have tongue swelling, which both doctors have never heard of they say.

They need to look it up on the Internet and get an education. My GP did not remember when I was diagnosed with it when I was on Tegretol XR. The neurologist immediately took me off of that medicine. It is to bad that the neurologist that diagnosed it died in a car accident, soon after.

I told my GP that it should be on my records. She said that she would look it up. I have patches of white skin showing up in different places.That is more thinning of the skin. When the blisters break open, then my skin will be gone in those places. Our skin is the largest organ we have.

I am on Lamictal but my neurologist cannot take me off of all of my medications. That is the first thing that has to be done. If I am taken off of all of medications, I will go into status epilepticus. I have had that twice. When I was 6 years old, I was only on one medicine, Dilatin. I was only having absence seizures at that time.

My tendons are showing up are longer are longer each day.. I am not in pain yet. I will be in pain once my blisters break open. My blisters are spreading. IThis will be an education for everyone at CWE about SJS from someone who actually has it.

The main thing that my GP told me that I did not know: It can go into remission and then show up again. I believe that is what has happened. It happens with epilepsy and cancer, as well. Both my father and sister had epilepsy until they were about 17. Then it came back when they were in their 60's. My mother had cancer and she went into remission several times.

I believe that is what has happened. It has come back after all of these years with my fight with it at 6 years of age. Thank you for your support. I will need it, since my husband is in denial. My doctors probably do not want a lawsuit. My neurologist is going to send me to the best dermatologist. Like he said though, he does not know if he will accept my insurance. I will continue keeping you updated. I am a fighter I do not feel sorry for myself.

[Nakamova]

I hope you can get treatment soon Ruth -- can you go to an ER to speed things up?

[Meetz1064]

PLEASE tell me you set that nurse straight.......

[Ruth]

I live in a small town. The ER calls my doctor when I go in. The ER does what the doctor says.

My husband said at lunch time:"You look awful." He did not believe the doctor who told me that I had it. I need him to take me to a top notch hospital. There are 2 that would take me in as an inpatient. They are: UCLA and UCSF. I need someone to drive me to one of them. You can ask Robin about these hospitals. My husband is my caregiver and he has the last say. When I was a child, my mother rushed me to a hospital right away.

My patches of white skin are increasing and are getting deeper. Soon the deep ones will take my skin away completely in those lplaces. Then it will be to late for any hospital to do anything. I am sick to my stomach more often. I have a raspy voice and I am having trouble swallowing food. My husband knows these things. Soon I will be drinking Glucerna through a staw. That way I will get some food. My husband knows about my tongue and swallowing.

I hope I am not upsetting anyone in the forum at CWE. I will probably not be on the internet much longer. I just want to educate everyone how SJS works.

[KellyD]

Oh my God Skillefer! Is that nurse crazy?

[Ruth]

You think that's bad Meetz? My baby spent it's first week at a different hospital then me. After I was released from the hospital, "I know your daughter better then you..." Not the thing to say to a new mom.

Skillefer, you say that you were in the hospital. What were you in the hospital for? Kelly

[Ruth]

Wikipedia Encyclopedia quote:

SYMPTOMS
SJS usually begins with fever, sore throat and fatigue, which is misdiagnosed and usually treated with antibiotics. Ulcers and other lesions begin to appear in the mucous membranes, almost always in the mouth and lips. Those in the mouth are usually extremely painful and reduce the patient's ability to eat or drink. Conjuctivitis of the eyes occurs in about 30% of children who develop SJS. A rash of round lesions about an inch across arises on the face, trunk, arms and legs, and soles of the feet, but usually not the scalp.

Stevens-Johnson Syndrome stands for SJS.

[PhylisFeinerJohnson]

1. I've been told that lamictal can trigger rashes similar to yours. Is there anything else you can take that's NOT characterized by a possible rash disorder?

2. Can you get another family member to take you to UCLA or UCSF? With the recommendation of your docs? (Dumb as they may be!) It's clear that these docs cannot do very much for you and Ruth, you MUST be proactive!

BIG Hugs,
P

[Ruth]

Hi Phylis, I am on 5 medications for my seizures: Lamictal, mysoline, Keppra, Neurontin and ?. I am on so many because I can go into status epilepsy. I probably will. They are going to clean the carpet, so I have to go right now. With love, everyone.

[PhylisFeinerJohnson]

What about what I said in my llst post about getting another family member to take you to UCLA or UCSF? With the recommendation of your docs? (Dumb as they may be!) It's clear that these docs cannot do very much for you and Ruth, you MUST be proactive! Clearly your symptoms are critical. You need help NOW!

[Ruth]

Hi Phylis, I hope this will post this time. I have tried 3 times, my computer is not working right. I put it in Epilepsy Talk under The Creative Writing Page in Epilepsy Talk. Let me know if you got my PM.

1. Asking the realitves is not an opion. They will ask hubby first.
2. I cannot drop my medicines, I will go into status.
3. For the first time, I could see the red underneath my skin. I had a real bad fever as well and I had problem with swalling my food and eating.
4. The soles of my feet were in real bad pain.
5. I treated the symptons. I used lotion, pain pill and an allergy pill.
6. When I see my doctor I will not treat the symptons. Then she will believe me. My hope is that she looked through my chart and see I have SJS.