Stevens-Johnson Syndrome Support Group

hello everyone! my name is April and my Mother has suffered from SJS since she was 4 years old. recently she has become very ill with a bad breakout from SJS. We are unfortunatly at our witts end with doctors. we can't seem to find anyone that can give any details or just plain take the time to figure out what is going on with her! I was wanting to know if anyone else has suffered from a similar case like my mothers? She has blisters all over her body with a purpleish red rash all over including blisters in the mouth and throat. It s been over 4 weeks now and she seems to get a little better after a little while then slips back into a breakout again. Please if anyone could give some advise on how they handled their situation and what doctor we could see that can help with SJS it would be greatly appreciated!! thank you

I had SJS in April and was in the hospital for 2 weeks and given high doses of iv steroid injections. I was also purple and lost layer after layer of my skin. Is your mother's hair falling out? I have somewhat recovered from the disease but all my hair is falling out and I don't know what to do and neither do the doctors.

Just in what I'm reading today -- please make sure she isn't taking ibuprophine or Aleve (NSAIDS - I think there are some arthritis meds that are NSAIDS other than Aleve) and nothing with Sulfa. If she is taking any medication at all, she needs to contact a good pharmacist and see if they can't figure out whats causing it.

I'm so sorry for you all! This is really horrible stuff.

hi there,

My name is Jason, I had my 1st outbreak when I was 21. I was taken into hospital as I hadn't been able to eat or drink for 7 days. I had blisters on my lips, my mouth was one blister, in my throat, nose, eyes and ears. I was given I.V steroids and Anti Virals for over 1 week. I have had many episodes but none as bad as the 1st until last week. Again I was admitted this time it has been the worst I have had, my whole face swelled to double its size and I got blisters all over my body this time. Steroid based mouth rinses, I.V also and anti-virals. These are a few of the things I have had prescribed - Betnesol - Aciclovir - Pednisolone - Diflam. No one has been able to advise me what has caused this or how to prevent or manage it. Most doctors I have seen other than when I have been admitted to hospital have all had no interest in investigating what it is and just diagnosed herpes and have had no idea what they are talking about at all!!!! I hope this helps in some way.

How long has it been since your 1st outbreak and how often do you get outbreaks? When you get the outbreak, are they equally as bad and how do you manage?