Steven’s-Johnson Syndrome — a danger for those on Dilantin or Lamictal

Steven’s-Johnson Syndrome — a danger for those on Dilantin or Lamictal | October 17, 2009

This article is not for those with a weak stomach. Because Steven’s-Johnson Syndrome is an ugly and sometimes deadly disease. But if you are on Dilantin or Lamictal, I urge you to read this information.

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

Often, signs of Steven’s-Johnson Syndrome begin with flu-like symptoms, followed by a painful red or purplish rash that spreads 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.

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

Steven’s-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 Steven’s-Johnson Syndrome can’t always be identified. Usually, the condition is an allergic reaction in response to medication, infection or illness. Anticonvulsants like Dilantin and Lamictal can be the culprits which means that complete withdrawal is necessary.

Possible complications of Steven’s-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 Steven’s-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 Steven’s-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 Steven’s-Johnson Syndrome because the trigger is unknown. However, if you’ve had Steven’s-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

Posted in Epilepsy
Tags: Dilantin, Epilepsy, Lamictal, rare, Research, skin shedding, Stevens-Johnson Syndrome

12 Comments »

I urge everyone with Steven- Johnson Syndrome to tell others about what happened. It actually happened to me. When I was 6 years old, I was diagnosed with epilepsy. I was put on Dilantin. I started out with a rash. I got worse. The rash then broke open and I started losing my skin. My mother took me right away to Children’s Hospital at San Francisco, CA. This was in 1949. They had no treatment for it. They put cold compresses on me to treat me. They thought I was going to die. Somehow, I survived it.

It can go into remmission and come back later in life. Two years ago, I was diagnosed with it again. This time my neurologist told me that it was Tegretol XR. He died in a car accident 2 months later, before he could do anything. I am 66 years old now. I have bumps underneath my skin and I have white patches of skin that are incresing. I can see my tendons underneath my skin.

My present neurologist has referred me to a dermatologist. I do not get to see him until January of 2010. He will confirm by a tissue biopsy whether is is Steven-Johnson’s Syndrome or something else. I hope to get a cancellation appointment and be seen sooner. I will keep you posted. Ruth

They have better ways of treating it now.

Comment by Ruth Brown — October 17, 2009 @ 4:42 pm

Reply
Phylis, thank you very much for your added research. It will help me very much.

Comment by Ruth Brown — October 19, 2009 @ 1:44 am

Reply
Hello
I just discovered this site . “maybe” lol ,memory problems, imagine that.
I respond here because I am starting to pay attention to some of these “side” affects .
I quit paying attention a few yrs back mostly because of self diagnoses and just knowing to much , just the mass confusion it was causeing in my head.
I guess I have had something like this ?
I will say the reaction that my neuro. had was the strongest he EVER had even giving me his personal number to call in case of more reactions .
I think I was taking lamictal at the time
I have taken 12 different meds and had serious side effects to all of them though.
The reaction I had at the time was a blistering effect on my tongue and lips ,every orifice that fluid came from my body had a mass amount of small white blisters , eyes,lips,tongue mouth ,privates, I think maybe ears, very bad, burning But I did not seek medical help until it was in decline maybe on the 2nd week?
My skin burned I did not sleep I guess was having nocturnal szs. but I was alone and very depressed and did not even realize how ill I may be? I know for sure this drug(lamictal) was the cause of a very high fever though .
I also did not know at the time about removing me from meds and szs. lol duh . I was removed from this in the v.a. in the morning and just cut loose ,alone , on a new drug and immediately started having long hard gmal szs for over a week
The memory of that rash,blisters is one of the strongest I have left . Please be careful. Rick

Comment by rick — October 28, 2009 @ 2:52 pm

Reply
Well Rick, just generally speaking, I was told when I went on Lamictal (the generic) that if I developed any kind of rash, spots or swelling, I should call my doc right away. At the time, I didn’t know about Steven’-Johnson Syndrome, but he did tell me that this rash could indead lead to death. Fortunately I had no reaction. Did you get any kind of warning from your doc?

Comment by Phylis Feiner Johnson — October 28, 2009 @ 6:59 pm

Reply
Rick, I am very sorry for your really bad reaction. That was my reaction to Dilantin when I was 6 years old. I do not know if becomes slower and less loss of skin when I get older. When it goes into remission. I am 66 years old now.

I am on Lamictal. My neurologist does not want to take me off of it, because I have a tendency to have Status Epilepticus. That is deadly, as well. I wish I could see a dermatologist that is a specialist sooner than January, 2010. I will have to wait and see.

The only warning I got, was never to take Dilantin again. I was not told about Lamictal, at all. I am glad that you had no reaction to the generic. That is what I am on.

Comment by Ruth Brown — October 30, 2009 @ 4:33 am

Reply
Hi Rick,
I just noticed that you said, I did not know about being taken off of meds, duh. Do not put yourself down. How could you know?

I fogot to mention that when I was 6 years old, I was only having abscene (petit mal) seizures. Now, I have every type of seizure you can imagine. That it makes it more difficult for my neurologist to know what to do. Either way I can die. Ruth

Comment by Ruth Brown — October 30, 2009 @ 4:57 am

Reply
Hi
Thanks . I saw this after you wrote it but had to wait .
First the reason I would give myself that “duh”is actually I did know all that type of imfo. but was just so out of tune during that time I am rather surprised I actually took the meds to start with
My quick history reads pretty simple
I,m 46 ,have had gmal szs. for 15yrs. But I now feel I have had auras all my life ?maybe going back to when I was hit by a car at age 6?
Probably partials also ? My “head rushes” are a lot longer than “normal” peoples. lol.
I also feel accurate in saying I have every type of these except a “drop” sz.
I have never let the gmal szs bother me NEVER more an annoyance than anything .
I am different now though because I am on s.s.d.i. for this and was approved in less than 90 days ? wow I guess I was sick ? that is still sinking in?
Not watching out for myself with a sz disorder led up to this . P.T.S.D. “life” was stacked up big time and I truly did not see it coming ?
On topic . I also took dilantin off and on for years but honestly did not pay a lot of attention and I now know it never worked .
I actually went back and looked and yes lamictal is the med I was taking when that blistering happened .
was it this syndrome ?I can not say . But I crashed hard after that from the with drawl from the meds and have really never been watched as close as I could have been .
I took tegretol also and loved it at least from a mind set. But it gave me partial szs and auras constantly over a 2 week period and that is when I realized how “mellow” the drug had made me. OOPs that was it
I usually make mention that I also have 15 years sobriety and never like “downers” when I was using drugs ,so it was an easy call.
Apparently whatever side effects I did have were bad , the reaction my Neuro. and his nurse had at the V.A. were the most positive they EVER had lol. he even gave me his personal ph. no. wow
I have taken 12 meds I guess and now I am on a drug study taking lacosimide.
I still have szs. though . mostly nocturnal gmals that last around 30 min. sometimes 1 but now have had 2 or 3 in row about 10 times.
I feel lucky compared to some though.
I have never bitten my tongue ? wow
Well enough of my rambling . please be care full Rick

Comment by Rick — October 30, 2009 @ 9:15 am

Reply
Hi Rick, the people who make the medicines do not want us to know. I think there are other medicines besides Dilantin and Lamictal that cause Stevens-Johnson Syndrome.

I know about 2 people who were on other medicines that they were told,”If you develop a rash, quit taking it and call me.” I found out that Texgretol XR is another one. The stronger they make the medicines, the more likely the rash.

I am 66 years old, I have had epilepsy since I was 6 years old. It is hereditary in my family. My father and sister had it. It goes way back in the centuries, on my father’s side.

I have a poem that makes it easier to explain my history.
I AM STILL HERE!
Six years old, 1949m
Absence seizures
Dilantin is deadly.
Steven’s-Johnson Syndrome
I am still here!

Twenty-years old, 1963
First grand mals
Three in a row.
I am still here!!

Thirty-six years old, 1979
First STATUS EPILEPTICUS
I went into a coma
I am still here!!

Confusion, getting lost,
Repeating myself, tremors
I do not know or remember
When I do these things.
I am still here!!

Fifty-five years old, 1996
Second STATUS EPILEPTICUS
Diabetes was the cause, the seizures stopped
I am Still here!

Sixty-four years old, 2007
Lots of different kinds of seizures,
Pneumonia, I had
Also diagonsed with Steven’s Johnson Syndrome
Told it was Tegretol XR.
I am also on Lamictal
I am still here!!

2009, white patches on my skin,
bumps I feel under my skin
rash and fever I get.
Dermatologist I see for a final diagnose in Jan.2010 He can do a biopy and skin grafts
Might be Stevens-Johnson, might be skin cancer. Either way, I am losing my skin.
I have been on so many medicines, Rick, in the last 60 years that I have lost count. Ruth

Comment by Ruth Brown — October 30, 2009 @ 10:36 pm

Reply
y 24 year old son began having grand mal seizures about nine years ago. Until 5 and a half years ago they were very far apart, and his doctor’s recommended not to medicate him, explaining that the seizures may disappear completely as he ages as mysteriously as they began. Then something horrible happened. He was charged with a crime he did not commit (which although his attorney compiled evidence clearing him, he was frightened into taking a plea bargain for 10 years in prison the night before he was to enter the not guilty plea). The problem with his epilepsy was that on the actual night of his arrest, the officers interrogating him (who did not like his answers because they did not fit their theory of the crime) forced him to stand up for 12 hours straight without food or water in hopes of ‘cracking’ him. The result of this was that he fell into a grand mail seizure in which he did not breathe for 10 minutes, and received a concussion. Instead of getting medical help, he was tossed in a cell and left to recover on his own. This was to change the severity and frequency of his seizures permanantly. It is also probably related to the prosecutor’s ability to maniputate him into a plea bargain months later which would never have stood if the case had been heard by a judge or jury. My son has already served over half of his sentence, and has been brought back to life dozens of times by prison EMTs. He has been on lethal doses of Tegretol, Dilantin, and now Dilantin and Lamictal (300 mg & 400 mg per day each, respectively). I never know if my phone conversations with him will be my last. My question is this, when the current dosage levels of these drugs quit working, and the will, is there any other medication being tested now that would be worth the risks, and have they found any effective substances for epileptics that do not cause Steven’s-Johnson Syndrome? Right now my son’s seizures come in 3’s, and always deprive him of oxygen and often cause injuries that in themselves are life threatening. Can you give me info on where I can find out about cutting-edge research on S-J syndrome and medications, including human studies being conducted? Is there anything known that might help keep him from getting Steven’s-Johnson?

Comment by kim cassidy — January 24, 2010 @ 1:54 pm

Reply
- Dear Kim,
  
  What happened to your son is a complete atrocity. What ever happened to “innocent before being charged guilty!” However, instead of focusing on Steven’s-Johnson Syndrome (which only happens in rare cases with Dilantin and Lamictal), I suggest you take a more pro-active approach and explore some of the links provided here.
  
  This is a list of anti epilepsy drugs (AEDS) with their possible side-effects: http://www.webmd.com/epilepsy/medications-treat-seizures
  And this site helps give information for prisoners who suffer from epilepsy: http://www.epilepsy.org.uk/sites/epilepsy/files/leaflets/pdf/epilepsyaction_information_for_prisoners.pdf
  Here is another website with a table of epilepsy drugs, brand names, average dose, treatment and possible side effects: http://www.epilepsysociety.org.uk/AboutEpilepsy/Treatment/Antiepilepticdrugsusedinadults
  
  If there’s anything else I can do to help you, please don’t hesitate to call on me…
  
  Comment by Phylis Feiner Johnson — January 24, 2010 @ 11:56 pm
  
  Reply
Hi Kim, no wonder you are frantic. I am sorry to hear you and your son is going through such a rough time. Keep fighting to get him out on parole. A 10 year sentence can be cut back to only a few years on parole.

I am on 5 medicines each day: Gabapentin or Neurontin-1800 mg, Lamotrigine or Lamictal-600 mg, Keppra-2500 mg, clonazepam-4 mg and Primidone-350 mg.

These are not lethal doses for me. It is what I need to keep my seizures under control. S-J Syndrome is fairly rare. Unless he has been diagnosed with it, you do not need to worry about it. There are medicines with a lot of rare side effects. Do not worry about them.

Comment by Ruth Brown — January 25, 2010 @ 3:52 pm

Reply
Hi Kim, here are (((HUGS))) Ruth

Comment by Ruth Brown — January 25, 2010 @ 3:54 pm

Reply

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I urge everyone with Steven- Johnson Syndrome to tell others about what happened. It actually happened to me. When I was 6 years old, I was diagnosed with epilepsy. I was put on Dilantin. I started out with a rash. I got worse. The rash then broke open and I started losing my skin. My mother took me right away to Children’s Hospital at San Francisco, CA. This was in 1949. They had no treatment for it. They put cold compresses on me to treat me. They thought I was going to die. Somehow, I survived it.

It can go into remmission and come back later in life. Two years ago, I was diagnosed with it again. This time my neurologist told me that it was Tegretol XR. He died in a car accident 2 months later, before he could do anything. I am 66 years old now. I have bumps underneath my skin and I have white patches of skin that are incresing. I can see my tendons underneath my skin.

My present neurologist has referred me to a dermatologist. I do not get to see him until January of 2010. He will confirm by a tissue biopsy whether is is Steven-Johnson’s Syndrome or something else. I hope to get a cancellation appointment and be seen sooner. I will keep you posted. Ruth

They have better ways of treating it now.

Comment by Ruth Brown — October 17, 2009 @ 4:42 pm

Phylis, thank you very much for your added research. It will help me very much.

Comment by Ruth Brown — October 19, 2009 @ 1:44 am

Hello
I just discovered this site . “maybe” lol ,memory problems, imagine that.
I respond here because I am starting to pay attention to some of these “side” affects .
I quit paying attention a few yrs back mostly because of self diagnoses and just knowing to much , just the mass confusion it was causeing in my head.
I guess I have had something like this ?
I will say the reaction that my neuro. had was the strongest he EVER had even giving me his personal number to call in case of more reactions .
I think I was taking lamictal at the time
I have taken 12 different meds and had serious side effects to all of them though.
The reaction I had at the time was a blistering effect on my tongue and lips ,every orifice that fluid came from my body had a mass amount of small white blisters , eyes,lips,tongue mouth ,privates, I think maybe ears, very bad, burning But I did not seek medical help until it was in decline maybe on the 2nd week?
My skin burned I did not sleep I guess was having nocturnal szs. but I was alone and very depressed and did not even realize how ill I may be? I know for sure this drug(lamictal) was the cause of a very high fever though .
I also did not know at the time about removing me from meds and szs. lol duh . I was removed from this in the v.a. in the morning and just cut loose ,alone , on a new drug and immediately started having long hard gmal szs for over a week
The memory of that rash,blisters is one of the strongest I have left . Please be careful. Rick

Comment by rick — October 28, 2009 @ 2:52 pm

Well Rick, just generally speaking, I was told when I went on Lamictal (the generic) that if I developed any kind of rash, spots or swelling, I should call my doc right away. At the time, I didn’t know about Steven’-Johnson Syndrome, but he did tell me that this rash could indead lead to death. Fortunately I had no reaction. Did you get any kind of warning from your doc?

Comment by Phylis Feiner Johnson — October 28, 2009 @ 6:59 pm

Rick, I am very sorry for your really bad reaction. That was my reaction to Dilantin when I was 6 years old. I do not know if becomes slower and less loss of skin when I get older. When it goes into remission. I am 66 years old now.

I am on Lamictal. My neurologist does not want to take me off of it, because I have a tendency to have Status Epilepticus. That is deadly, as well. I wish I could see a dermatologist that is a specialist sooner than January, 2010. I will have to wait and see.

The only warning I got, was never to take Dilantin again. I was not told about Lamictal, at all. I am glad that you had no reaction to the generic. That is what I am on.

Comment by Ruth Brown — October 30, 2009 @ 4:33 am

Hi Rick,
I just noticed that you said, I did not know about being taken off of meds, duh. Do not put yourself down. How could you know?

I fogot to mention that when I was 6 years old, I was only having abscene (petit mal) seizures. Now, I have every type of seizure you can imagine. That it makes it more difficult for my neurologist to know what to do. Either way I can die. Ruth

Comment by Ruth Brown — October 30, 2009 @ 4:57 am

Hi
Thanks . I saw this after you wrote it but had to wait .
First the reason I would give myself that “duh”is actually I did know all that type of imfo. but was just so out of tune during that time I am rather surprised I actually took the meds to start with
My quick history reads pretty simple
I,m 46 ,have had gmal szs. for 15yrs. But I now feel I have had auras all my life ?maybe going back to when I was hit by a car at age 6?
Probably partials also ? My “head rushes” are a lot longer than “normal” peoples. lol.
I also feel accurate in saying I have every type of these except a “drop” sz.
I have never let the gmal szs bother me NEVER more an annoyance than anything .
I am different now though because I am on s.s.d.i. for this and was approved in less than 90 days ? wow I guess I was sick ? that is still sinking in?
Not watching out for myself with a sz disorder led up to this . P.T.S.D. “life” was stacked up big time and I truly did not see it coming ?
On topic . I also took dilantin off and on for years but honestly did not pay a lot of attention and I now know it never worked .
I actually went back and looked and yes lamictal is the med I was taking when that blistering happened .
was it this syndrome ?I can not say . But I crashed hard after that from the with drawl from the meds and have really never been watched as close as I could have been .
I took tegretol also and loved it at least from a mind set. But it gave me partial szs and auras constantly over a 2 week period and that is when I realized how “mellow” the drug had made me. OOPs that was it
I usually make mention that I also have 15 years sobriety and never like “downers” when I was using drugs ,so it was an easy call.
Apparently whatever side effects I did have were bad , the reaction my Neuro. and his nurse had at the V.A. were the most positive they EVER had lol. he even gave me his personal ph. no. wow
I have taken 12 meds I guess and now I am on a drug study taking lacosimide.
I still have szs. though . mostly nocturnal gmals that last around 30 min. sometimes 1 but now have had 2 or 3 in row about 10 times.
I feel lucky compared to some though.
I have never bitten my tongue ? wow
Well enough of my rambling . please be care full Rick

Comment by Rick — October 30, 2009 @ 9:15 am

Hi Rick, the people who make the medicines do not want us to know. I think there are other medicines besides Dilantin and Lamictal that cause Stevens-Johnson Syndrome.

I know about 2 people who were on other medicines that they were told,”If you develop a rash, quit taking it and call me.” I found out that Texgretol XR is another one. The stronger they make the medicines, the more likely the rash.

I am 66 years old, I have had epilepsy since I was 6 years old. It is hereditary in my family. My father and sister had it. It goes way back in the centuries, on my father’s side.

I have a poem that makes it easier to explain my history.
I AM STILL HERE!
Six years old, 1949m
Absence seizures
Dilantin is deadly.
Steven’s-Johnson Syndrome
I am still here!

Twenty-years old, 1963
First grand mals
Three in a row.
I am still here!!

Thirty-six years old, 1979
First STATUS EPILEPTICUS
I went into a coma
I am still here!!

Confusion, getting lost,
Repeating myself, tremors
I do not know or remember
When I do these things.
I am still here!!

Fifty-five years old, 1996
Second STATUS EPILEPTICUS
Diabetes was the cause, the seizures stopped
I am Still here!

Sixty-four years old, 2007
Lots of different kinds of seizures,
Pneumonia, I had
Also diagonsed with Steven’s Johnson Syndrome
Told it was Tegretol XR.
I am also on Lamictal
I am still here!!

2009, white patches on my skin,
bumps I feel under my skin
rash and fever I get.
Dermatologist I see for a final diagnose in Jan.2010 He can do a biopy and skin grafts
Might be Stevens-Johnson, might be skin cancer. Either way, I am losing my skin.
I have been on so many medicines, Rick, in the last 60 years that I have lost count. Ruth

Comment by Ruth Brown — October 30, 2009 @ 10:36 pm

y 24 year old son began having grand mal seizures about nine years ago. Until 5 and a half years ago they were very far apart, and his doctor’s recommended not to medicate him, explaining that the seizures may disappear completely as he ages as mysteriously as they began. Then something horrible happened. He was charged with a crime he did not commit (which although his attorney compiled evidence clearing him, he was frightened into taking a plea bargain for 10 years in prison the night before he was to enter the not guilty plea). The problem with his epilepsy was that on the actual night of his arrest, the officers interrogating him (who did not like his answers because they did not fit their theory of the crime) forced him to stand up for 12 hours straight without food or water in hopes of ‘cracking’ him. The result of this was that he fell into a grand mail seizure in which he did not breathe for 10 minutes, and received a concussion. Instead of getting medical help, he was tossed in a cell and left to recover on his own. This was to change the severity and frequency of his seizures permanantly. It is also probably related to the prosecutor’s ability to maniputate him into a plea bargain months later which would never have stood if the case had been heard by a judge or jury. My son has already served over half of his sentence, and has been brought back to life dozens of times by prison EMTs. He has been on lethal doses of Tegretol, Dilantin, and now Dilantin and Lamictal (300 mg & 400 mg per day each, respectively). I never know if my phone conversations with him will be my last. My question is this, when the current dosage levels of these drugs quit working, and the will, is there any other medication being tested now that would be worth the risks, and have they found any effective substances for epileptics that do not cause Steven’s-Johnson Syndrome? Right now my son’s seizures come in 3’s, and always deprive him of oxygen and often cause injuries that in themselves are life threatening. Can you give me info on where I can find out about cutting-edge research on S-J syndrome and medications, including human studies being conducted? Is there anything known that might help keep him from getting Steven’s-Johnson?

Comment by kim cassidy — January 24, 2010 @ 1:54 pm

Dear Kim,

What happened to your son is a complete atrocity. What ever happened to “innocent before being charged guilty!” However, instead of focusing on Steven’s-Johnson Syndrome (which only happens in rare cases with Dilantin and Lamictal), I suggest you take a more pro-active approach and explore some of the links provided here.

This is a list of anti epilepsy drugs (AEDS) with their possible side-effects: http://www.webmd.com/epilepsy/medications-treat-seizures
And this site helps give information for prisoners who suffer from epilepsy: http://www.epilepsy.org.uk/sites/epilepsy/files/leaflets/pdf/epilepsyaction_information_for_prisoners.pdf
Here is another website with a table of epilepsy drugs, brand names, average dose, treatment and possible side effects: http://www.epilepsysociety.org.uk/AboutEpilepsy/Treatment/Antiepilepticdrugsusedinadults

If there’s anything else I can do to help you, please don’t hesitate to call on me…

Comment by Phylis Feiner Johnson — January 24, 2010 @ 11:56 pm

Hi Kim, no wonder you are frantic. I am sorry to hear you and your son is going through such a rough time. Keep fighting to get him out on parole. A 10 year sentence can be cut back to only a few years on parole.

I am on 5 medicines each day: Gabapentin or Neurontin-1800 mg, Lamotrigine or Lamictal-600 mg, Keppra-2500 mg, clonazepam-4 mg and Primidone-350 mg.

These are not lethal doses for me. It is what I need to keep my seizures under control. S-J Syndrome is fairly rare. Unless he has been diagnosed with it, you do not need to worry about it. There are medicines with a lot of rare side effects. Do not worry about them.

Comment by Ruth Brown — January 25, 2010 @ 3:52 pm

Hi Kim, here are (((HUGS))) Ruth

Comment by Ruth Brown — January 25, 2010 @ 3:54 pm

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