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Long term effects of Steven Johnson's Syndrome

I was curious if anyone else has had long term issues, including nerve pain or numbness after Steven Johnson's Syndrome. I had SJS after taking an antibiotic years ago and have had sensations of being electricuted, stabbed, and pin and needles since a few months after the episode. It occurs in my extremities and face. I have muscle spasms and weakness. Large areas of skin on my thigh are completely numb. I still have odd rashes and discolorations, and an increased sensitivity to the sun and topical allergies. I have dry eyes, and eye pain and redness that doesn't seem to be associated with allergies, but I could be wrong. Joint pain, swelling,  and trigger fingers. My arms will blanche, fingers turn blue, then my hand becomes flushed and red, almost swollen. Tests have so far ruled out autoimmune disorders and I have no idea what the heck is going on. A co-worker of my mother says she has had nerve pain and numbness since her SJS, but I don't know if it is a sound enough theory to bother a neurologist about.

Has anyone else had long term problems due to SJS? What are they?
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Also my skin itches like crazy especially while taking a bath
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I'm 24 y/o & I had SJS/TEN two months ago, it was so painful & my skin was so sensitive it ripped on my back when the paramedics lifted me from the gurney to the bed! But I too suffer from numbness all over especially my hands legs & feet & constant muscle pain. My vision is blurry & my eyes burn all the time. The sun burns my eyes as well. My skin is red & patchy & my nails are going to fall off, they look as if I have fake nails on & have grown out, I'm really nervous about that because I've heard they might not grow back!
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I'm not sure exactly how your nails will react, but when I had it way back in October '93, my nails all grew off, & only a few partial nails grew back.  In their place, I have hardened cuticles.  Just keep them moisturized, & they'll be fine.  Even more important, keep your eyes moist with eyedrops &/or ointment.  If your lashes grow into your eyes like many of mine do, please be sure to get them pulled either by yourself or by your ophthalmologist, promptly.  Once, I didn't get one pulled by the doctor as quickly as I should have.  I felt embarrassed bothering them too much.  I waited a few days, & by the time I went to see them, my cornea had become permanently shredded.  Requiring 6 cornea transplants to finally get one to stay has caused life-altering effects.
So sorry for all you had to go through- thank you for sharing your story to help others!
Avatar universal
I suffered from sjs in 2007 and I have problems with nerve pain and muscle pain. I was just wondering about the after effects of sjs and came across your post. I have been going to the doctor and having different test ran to determine why I feel like I do, and no one seems to know. Did a doctor tell you that these things can be related?
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