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

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: 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!!

By: patricia moran

patricia moran — Thu, 30 Dec 2010 23:58:10 +0000

listen to Phylis, she is very smart,,she works hard at keeping up to date info available and
knows how to do serious research,,, she puts her heart into everything she does
(she is our secret weapon,shh!she doesn’t know)
may you be blessed with everything that you will need for yourself and the children
thank you Lord

By: Phylis Feiner Johnson

Phylis Feiner Johnson — Thu, 09 Dec 2010 13:03:16 +0000

Eleanor, first of all, take a deep breath. Chills are when you feel cold all over. Hives appear as a rash on your skin.

What kind of meds are you on? How long have you been on them?

Have you considered switching docs or at least getting a 2nd opinion? I feel strongly that you should. There’s no reason for someone to suffer like you’re doing.

First of all find a new doc. This is a comprehensive list of the best neurologists, epileptologists, neurosurgeons and pediatric doctors, compiled by eforum members, based upon their own positive personal experiences.

http://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

While you’re waiting for your appointment, busy as you are, try to keep a daily seizure diary. Note down your sleep patterns, what you eat (and when), your daily activities (and any emotional upsets), how you feel before a seizure (triggers? auras?), during a seizure and then after, plus the duration of the seizure.

This will help your NEW doc get a better idea of what you’re going through.

If you think you’re having an interaction from your drug mix, visit your pharmacist. They’re a goldmine of experience.

The pharmacist gets a soldier’s view of patients with similar conditions, using different medications every day. They see who improves and who complains about side effects. Plus, pharmacists can be helpful in discussing the potential adverse effects of medications, their costs, the relative risks and benefits of generic versus brand-name medications and potential interactions.

Please do all 3 of these things ASAP. And please. Let us know how you are doing.

By: Eleanor brown

Eleanor brown — Thu, 09 Dec 2010 11:33:50 +0000

I started having grand-mal seizures and taking meds now I have something I think is chills is it hives ? I’m 32 and alone with 3 children youngest 2 my body aches so bad i feel horrible & the drs dont listen ! HELP