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-   -   Anyone dealt with Stevens-Johnson Syndrome (https://www.neurotalk.org/epilepsy/200498-dealt-stevens-johnson-syndrome.html)

Sissylou 02-01-2014 02:41 PM

Anyone dealt with Stevens-Johnson Syndrome
 
I am having pain in my mouth and gums. It has kept me awake all night, which is a trigger for my seizures. My husband went and asked the pharmacist if she knew of something that I could use to wash my mouth out which would help with the pain.

She asked him a few questions, one of which was am I using Lamictal (which I am and it works well for me) and she told him I need to get to my neurologist first thing and ask him about Stevens-Johnson Syndrome.

Did a bit of research online to find out what she was talking about. EXTREMELY scarey stuff.

I was wondering if anyone else here had any experience with this syndrome or with symptoms that mimic the condition.

Thank you for any info you can give.

Porkette 02-02-2014 10:26 AM

Hi Sissy Lou,

I'm sorry to hear that you are going through hard times now. When I was on lamictal I broke out with a rash within 4 days and had to go off the drug. I do know that they have been connections with lamictal causing Steven Johnson Syndrome and there has been legal lawsuits against the drug co.
Check with your pharmacist to get the details or just type in "lamictal causing steven Johnson syndrome "and you will find a lot of detail.

For yrs. I've always rinsed my mouth out with hydrogen peroxide after I brush my teeth. My dentist told me it gets rid of bacteria and make a persons teeth whiter so you may want to give that a try but play it safe and check with your pharmacists first. I will tell you it doesn't taste that great but it's saved a lot of trips to the Dr. and Dentist for me over the yrs. especially when I get a cold or any infections in my mouth or body.

Here's wishing you only the best of luck and May God Bless You!

Sue

Sissylou 02-03-2014 10:48 AM

Thank you, Porkette. I have a call in to my neurologist right now. He is great about getting back with me quickly. My mouth feels a bit better today, but there are still very tender spots there. Hopefully, I am just being too nervous about this.

Thanks, again,
Nan

Jomar 02-03-2014 11:40 AM

Do you think a drug triggered the possible SJS?

That's how someone I know got SJS, her eyes got affected the worst from it.
This person started out with Pemphigus vulgaris. The treatment for PV caused the SJS.

sores in the mouth were her first symptoms.

[Pemphigus vulgaris is an autoimmune disorder that involves blistering and sores (erosions) of the skin and mucus membranes.]
http://www.nlm.nih.gov/medlineplus/e...cle/000882.htm

Porkette 02-03-2014 04:55 PM

Hi Sissylou,

How are things going for you today? I hope that your neuro was able to get back to you to find out what's going on. My prayers are with you and May God Bless You!

Sue


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