Comments on: Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal

By: Phylis Feiner Johnson

Phylis Feiner Johnson — Mon, 05 Mar 2012 20:41:42 +0000

Andi, I don’t have specific experience with SJS but I can give you names for 2nd opinions and advice + the SJS website.

2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

This is a compilation by website forum members who have had positive personal experiences with their docs over the years.

Best Neurology & Neurosurgery Hospitals

http://health.usnews.com/best-hospitals/search?hospital_name=Hospital+name&specialty_id=IHQNEUR&city=City%2C+State+or+ZIP

This is a link to the U.S. News and World Report’s current list for best Neurology & Neurosurgery hospitals. More than 1,200 hospitals are included. The top 50 are ranked and the rest are listed alphabetically.

SJS Fact Sheet

http://www.sjsupport.org/fact.shtml

SJS Patient Resources (Bottom of page)

http://www.sjsupport.org/patient.shtml

I know this doesn’t answer your question. But perhaps you can find some help.

By: Andi

Andi — Mon, 05 Mar 2012 19:52:33 +0000

HI, I am a survivor of SJS. I had it when I was 19 and I am now 43. I am having tons of unexplained health issues and had a doctor tell me it couldn’t have anything to do with the SJS. (Fibromyalgia, skin rashes, fatigue etc.) I have been researching it off and on for about 4 years now, mostly online, and feel it definately could be. I cannot find any writings on survivors later in life. If you know of any please let me know. Thank You and good luck to you all. Andi

By: Phylis Feiner Johnson

Phylis Feiner Johnson — Mon, 19 Dec 2011 23:24:03 +0000

Oh Michele,

What you went through is ghastly. (And it sounds pretty grim, even at this point.)

When my doctor was in med school, one of his co-students developed Stevens-Johnson and she died.

He said it was the most depressing event in his life at that time. All those doctors and no one could save her life.

Thank you for writing…thanks for your wise words…and the education.

By: Michele

Michele — Mon, 19 Dec 2011 22:45:46 +0000

I am 38 and 2 years ago I had Steven Johnson Syndrome. The actual cause could not be pin-pointed. (In my case possible Enalapril bp meds or IV contrast dye or cough syrup or any combination of these.) My condition started with a severely sore mouth a few days before the rash and fever broke out…and it took my doctors 4 days in the hospital doing tons of blood tests to figure out what it was once the rash started. I was told by my many doctors that there is over 1000 different meds that can cause Steven Johnson Syndrome. And I was also told that Ibuprofen and Motrin can be major causes of it so I try to avoid these as much as possible. I have also been told over my many appointments with many doctors over the last 2 years (still seeing doctors because I have developed severe eye complications with scarring due to the Steven Johnsons) that it can also be caused from an immune deficiency issue. And also told that once you have had it, you are 15-20% more likely to have it happen again. And I was also told that Steven Johnsons can present itself anywhere from hours up to a week after drug exposure. And it usually progresses quickly and there is no real treatment-all they can do is give you diaretics to flush it out of your system quicker and then treat the symptoms that are already present until they subside and then treat you for the lingering complications afterward (such as my eye condition). And it can be very deadly. If the drug is extremely strong and fully in your system it can shut down your organs and be fatal. I am only sharing this info so that everyone is aware how serious this condition can be. I wish the best to anyone who may be experiencing the effects of this condition. Speaking from personal experience, this is one of the worst things that has ever happened to me in my life…the effects are so devestating and life-changing.

By: lila

lila — Mon, 05 Dec 2011 20:25:03 +0000

lila,please i want to know if u get a mild casesjd could it get worse a week later i am sooo scared and can people catch it from me

By: Johnson

Johnson — Sun, 09 Oct 2011 17:15:12 +0000

Yes, Lamictal can case Stevens-Johnson Syndrome, but usually the result is immediate.

That’s why they titrate you slowly. But nonetheless, if you are concerned, I urge you to take pictures (if you can reach the areas) and show them to your neuro.

He might want to switch you to something else.

By: michelle

michelle — Sun, 09 Oct 2011 14:30:26 +0000

I think I have a mild case of SJS. I have been taking Lamictal for 7 years now. My rash spreads from my back to my stomach. I also have painful sores on my tongue. I’ve had these symptoms for at least 4 years now and never did anything about them. I finally decided to research my condition, but haven’t found much information about mild cases of SJS. Does anyone know if you can develp SJS after several years of taking Lamictal?

By: Phylis Feiner Johnson

Phylis Feiner Johnson — Thu, 08 Sep 2011 19:14:36 +0000

Well Jeanna, thank you for the compliment. But I don’t ever think I could match your mom in that department.

Meds are such a crap shoot. Just when you think you MAY have it right, boom.

Believe me, I kissed a lot of frogs, before I found my magical med mix!

I hope you don’t have to do the same…

By: jeanna

jeanna — Thu, 08 Sep 2011 18:57:42 +0000

Phyllis..You and My mother Candi are friends…I think the 2 of you are the most wonderful people in the world for all you do for us Ep patients…They are switching my meds Again! I know my mother will keep you updated..But again Thanx!

By: ruth brown

ruth brown — Fri, 31 Dec 2010 21:30:32 +0000

Pat, I agree!!