Yes - diagnosed with SJS July 2008. Am still recovering today Aug 23. Had 3 great doctors who between them determined quickly what it was, treated it correctly, and saved my life!
Hydroxychloroquine (generic of plaquenil) prescribed for my rheumatoid arthritis was the culprit. I can not take any medications yet and my arthritis and sciatica has flared terribly - beginning to kill me!
While taking those very large doses of prednisone, my arthritis pain and sciatica subsided a lot but the skin on my body more than made up for it. Also the march of my dementia doesn't seem so bad - wish this would stay! Am wondering if prednisone is relieving some kind of swelling in my brain? But on my exterior, the prednisone caused large puffing up of my body from top to bottom.
Where the biopsy was taken off my leg has hardly healed at all and it has been several weeks since. Am going to dr Tuesday and will mention.
Symptoms: At first I couldn't breathe and slept sitting upright on the sofa, then horrible rash came, tongue and throat swelling, blistering under skin, several thick layers of blisters, blistering inside mouth, extreme claminess, even more fatigue than usual, if possible - felt I had a thick coating of water all over my body at any given time, and approx 60 percent of my hair has fallen out. Still cutting off quite a bit of dead skin each day and hoping my hair re-grows.
My new skin is extremely sensitive - only sensation felt until last few days was pain. Cool/warm all caused same sensation = pain. Feeling better and using warmer water now.
That awful "under rash" I call it, has subsided most everywhere except my thighs and hips - some still on back.
But it is still visible just beneath the surface of almost all my skin. Am wondering if that under rash will ever go away. It becomes deeper red when I get hot or I step into the sunshine, so I have been avoiding both.
Except where there is new skin, my skin feels like sandpaper. Hands lost very thick layers of skin. In fact, very deep, 1000's tiny blisters appeared deep under the skin of my hands before I noticed breathing difficulty. Thought I'd touched a chemical or something - didn't know where it was headed!
My feet look - well - I guess I don't have the words to describe them but the bottoms are hideous! Still have lots of skin sheets to cut from them as it continues to loosen.
Other than septicemia I got in 1989 (post partem), I don't think I have ever felt this close to death. I felt flu-like for a couple of weeks! Glad to be on road to getting this wicked stuff behind me!
My sjs I was told was a minor case but it still sucked so I feel your pain. I had just got home from work and felt very weak and very sick all of the sudden. My skin on my hip started to burn and my skin started peeling off like sunburn only thicker. Thinking I might have a seizure I called my aunt and from there I mustve fainted cuz I don't remember anything except waking up in an er with a doctor telling me I may have sjs. It f
was a long battle. I don't remember much of 2007. I hope all goes well with your battle against sjs.
Hi. I had SJS when I was 4 years old (30 years ago now) and I still suffer with the consequences. I was in hospital for around a month. I have scarring to my face, I am unbearably sensitive to the sun! I have to cover up or stay inside when its hot and even on overcast days I have to wear a high protection suncream, most of which I cant use because I come out in a rash and little blisters. And if I do catch some sun I go really red and Im shivering for a few days after. my eyes dont produce enough tears so theyre constantly dry and I have to put drops in, I have trouble swallowing some food which I dont understand. I remember some parts of being ill like it was yesterday. I remember the pain, being covered in blisters inside and out, not being able to speak or cry, I remember screaming and having to be sedated when I needed the toilet. I wouldnt let anybody near me and I remember when I was better I wouldnt speak to anyone or let anyone touch me.
I find it hard talking to people who havent been through it because they dont understand just how horrific it was. I showed one of my friends a picture of me from when I was ill and she called me a freak, so I havent spoken about it to anybody since.
Ive been in touch with trying to get hold of my medical records so I can fully understand what happened and why because nobody has ever explained it to me and when I ask someone they say they dont know. Ive had no follow up care what so ever because the doctors around here still dont know much about it as it is extremely rare around here, im the only person in this area who has had it.
Rhi
Hydroxychloroquine (generic of plaquenil) prescribed for my rheumatoid arthritis was the culprit. I can not take any medications yet and my arthritis and sciatica has flared terribly - beginning to kill me!
While taking those very large doses of prednisone, my arthritis pain and sciatica subsided a lot but the skin on my body more than made up for it. Also the march of my dementia doesn't seem so bad - wish this would stay! Am wondering if prednisone is relieving some kind of swelling in my brain? But on my exterior, the prednisone caused large puffing up of my body from top to bottom.
Where the biopsy was taken off my leg has hardly healed at all and it has been several weeks since. Am going to dr Tuesday and will mention.
Symptoms: At first I couldn't breathe and slept sitting upright on the sofa, then horrible rash came, tongue and throat swelling, blistering under skin, several thick layers of blisters, blistering inside mouth, extreme claminess, even more fatigue than usual, if possible - felt I had a thick coating of water all over my body at any given time, and approx 60 percent of my hair has fallen out. Still cutting off quite a bit of dead skin each day and hoping my hair re-grows.
My new skin is extremely sensitive - only sensation felt until last few days was pain. Cool/warm all caused same sensation = pain. Feeling better and using warmer water now.
That awful "under rash" I call it, has subsided most everywhere except my thighs and hips - some still on back.
But it is still visible just beneath the surface of almost all my skin. Am wondering if that under rash will ever go away. It becomes deeper red when I get hot or I step into the sunshine, so I have been avoiding both.
Except where there is new skin, my skin feels like sandpaper. Hands lost very thick layers of skin. In fact, very deep, 1000's tiny blisters appeared deep under the skin of my hands before I noticed breathing difficulty. Thought I'd touched a chemical or something - didn't know where it was headed!
My feet look - well - I guess I don't have the words to describe them but the bottoms are hideous! Still have lots of skin sheets to cut from them as it continues to loosen.
Other than septicemia I got in 1989 (post partem), I don't think I have ever felt this close to death. I felt flu-like for a couple of weeks! Glad to be on road to getting this wicked stuff behind me!
was a long battle. I don't remember much of 2007. I hope all goes well with your battle against sjs.
I find it hard talking to people who havent been through it because they dont understand just how horrific it was. I showed one of my friends a picture of me from when I was ill and she called me a freak, so I havent spoken about it to anybody since.
Ive been in touch with trying to get hold of my medical records so I can fully understand what happened and why because nobody has ever explained it to me and when I ask someone they say they dont know. Ive had no follow up care what so ever because the doctors around here still dont know much about it as it is extremely rare around here, im the only person in this area who has had it.
Rhi