Mayo Clinic Connect
I am dealing with the effects of SJS and was recently released from Hospital. The recovery is continuing at home. I am concerned with possible after effects and was interested in anyone else’s experience with this condition.
My son had SJS 3 years ago at the age of 8, he is now 11. How has your recovery been?
my grandson is going through it rt now… he is 4. was diagnosed with mycoplasma- which caused this… rash around eyes, armpits, neck, groin area, behind knees, inside arm folds…. eyes irritate him, hands and feet hurt- burn… he dips hands in water every 2- 5 min. came home from hsptl just yesterday— they were stunned and didn’t know what he had at first. Parents decided they could treat him on their own at home… doing the same thing the hsptl was. Giving antibiotics, an antihistamine, tylenol 3 for pain and applying neosporin to skin. didn’ t know about it myself but know it’s rare and praying he recovers well
I was misdiagnosed several times before one doctor finally told me the shedding, swelling and other severe physical issues I was having were SJS. I’m on my fourth “shed,” and have stopped the prednisone, in order to try to let my body handle what’s left of it. It was extremely frightening and continues to “morph” into all kinds of different rashes and other issues. I had swelling and peeling of skin from hands and feet, as well–even my palms and the bottoms of my feet were involved. I was amazed by that.
My eyes are fine. But over time, the prednisone raised my blood sugar to diabetic levels and did other damage, so I’m sticking to my guns. I do use a corticosteroid ointment right now that is helping me deal with what I hope is the last round of rashes and shedding. I use Benadryl for particularly itchy days, and have Doxepin, a sedative, to help me reduce tension and get some sleep. Otherwise…no other meds. I’ve been dealing with this for four months, and will visit Mayo in Arizona this week to try to find out more about what I can do for this thing. It has been the greatest ordeal of my life!
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I had Steven Johnson syndrome in 2008they Mister diagnosed me also I stay in the hospital for 4months and when I was released I had to have electro lyte treatments I have permanent scars all overrun my body I wear long sleaves all year round I’m really embarrassed of these scar sometimes I feel depress but that’s when I pray it feels good to hear other people story
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