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My Stevens Johnson Syndrome Story

Updated on August 10, 2014
Mild case of Stevens Johnson Syndrome back in 2012. This is very real.
Mild case of Stevens Johnson Syndrome back in 2012. This is very real.

The 1st thing I must say is please educate yourself before you medicate, because what I'm about to tell you is very real and very personal. Also I'm sorry for that lack of pictures of myself, but they're extremely hard for me to see and relive.

Back in October 20, 2012 I had a UTI and went to the hospital for medication. I was given Bactrim DS and started taking them as required. About 3 days after, I began to have swelling on my lips and I had hives spread throughout my body. I thought it was a simple allergic reaction and Benadryl would take care of it. The more Benadryl I took, more hives would come. The next day, the swelling around my lips started to spread around my cheeks. I looked online for a way to heal myself of this allergic reaction without going to the hospital, but what I found online was very scary. I saw an article that said Sulfa drugs can cause a rare allergic reaction called Stevens Johnson Syndrome but I didn't think that's what it was.

My 1st visit was to Shawnee hospital and I was told I had shingles and was given Prednisone and doxycycline, I was told take these and your problems will be gone. They released me and told me it was nothing. I went home and took the prednisone and doxycycline. I took them 2x a day with no effect, as a matter of fact, I was getting worse. I went back to the hospital only for the doctors to give me a steroid shot in the hip then again I was sent home.

On Halloween, I couldn't go out. I was feeling like I was dying, I was so scared of what was happening and no one could tell me anything. I felt like I was knocking at death's door, and my body was. Later that night, I began to get blisters where the hives were on my body. The itching had stopped only to have blisters in its place, all of them were around my mouth and I had lesions around my mouth.

On November 2nd, I told my mother "I don't wanna die, I'm not ready to die." My sister-in-law's mother suggested Norman Memorial Hospital. We decided this was the last time we were going to go to the emergency room. I walked to the car with my arms straight in front of me, I began to have more blisters coming up on my arms and my legs. I walking into the ER and went to register, I was immediately asked what did I take. I told them I took Bactrim DS. I was taken back to a room in the ER. I had 3 nurses around me, one was putting an I.V. in my arm, another was getting the doctor and the last was giving me an epinephrine shot in my right bicep.

The Doctor came in an pulled open my mouth, which broke the lesions around my lips. I was taken back to X-Ray. When I came back, my brother and father were there waiting for a diagnosis. The doctor came and said I have Stevens Johnson Syndrome. My mother asked what that was and the doctor told her that it was a skin condition in which the body attacks itself. The doctor was asked why I needed an X-Ray, he said it was to make sure some of the dead skin didn't get inside of my lungs, he said if it did then I could suffocate. Finally after 8 hours, I was admitted into the hospital.

I was given a doctor who had seen 3 cases like mine. Dr. Wen said what I had was a mild case, it didn't feel mild. Everyday for the next 3 days I was given liquid Prednisone and liquid antibiotics. The swelling, the blisters were going away until about 3AM on the night of November 2, 2012. The swelling and blisters were coming back at full force, I began to itch again like before until I was again given a dose of prednisone and it again went away and I was given Zyrtec which made the hives and the itch go away.

November 3rd, my family came to see me in the hospital as I was getting better. The lesions around my mouth were going away slowly. But I wasn't ready to come back home. My brother and sister-in-law told me I was on 150 prayer chains. My sister-in-law said she looked up what Stevens Johnson Syndrome was and found out that its fatal. The blisters were turning into scabs and my skin began to peel, but only a little bit.

November 4th, I was still in the hospital. Everyday I was giving blood. On this day when the nurses changed, one told another "Have you ever heard of Stevens Johnson Syndrome?" The other said I've heard of it, but I've never seen it. She was told to prepare herself, she was about to see it. She walked in and was pretty shocked at what she saw. My body had a red-purple rash all over it, I had blisters that were scabs all over my face and legs. My feet were beginning to have blisters and my arms were a little swollen.

Finally my last day in the hospital came, November 5th. I was discharged from the hospital. I went come and the only thing I was thinking of on that day was a song by Daughtry "Home." I went home and my family had made a sign that said Welcome Home. My recovery took 4 months. I was told by Dr. Wen, if I take another Sulfa based drugs I will have this again and it won't be mild and there's a good chance I won't live.

I have side effects from having this condition. I'm sensitive to sunlight, my nerves are scarred and raw, I get blisters and rashes with no warning. My acne I had for a long time was burned off and I have some scars on my face from the blisters. Because of this condition, I have felt alone and scared. I'm still scared of what I can take. But I feel like I have a new purpose in life with this condition and this 2nd chance on life I've been given. I would never wish this on any of my enemies.

Stevens Johnson Syndrome is a very rare and serious allergic reaction, to save others from what I have to endure every day, there is a list of meds that cause this. It consists of over-the-counter meds like ibuprofen, Tylenol, Aspirin just to name a few. Anti-convulsants can cause this, as well as most antibiotics. The most horrifying thing I have heard is that there is no cure for this, no real treatment and no way to prevent it.

So please to save you from not going through this, be careful with what you're taking. Also I have one quick thing to say before I go. On Youtube, I have some friends who have been through this and their stories can educate probably better than I can, look up Jamesy Bender and Becki Conway. You'll find Becki's at SJS survivor on youtube.

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    • pstraubie48 profile image

      Patricia Scott 3 years ago from sunny Florida

      Thanks for sharing this experience that was so difficult for you. It is important for others to know and may be avoid it. I hope you recover fully.

      Angels are on the way to you ps

    • Raevyn14 profile image
      Author

      Raevyn14 3 years ago from Tecumseh, Oklahoma

      @Barabra, there's really no chance for me to get better. The problems I listed will be with me for the rest of my life, but I appreciate your concern. Since you are taking them, be leery of the side effects and SJS is one of those side effects

    • Barbara Kay profile image

      Barbara Badder 3 years ago from USA

      This is scary. I'm on a lot of meds for Crohns Disease and now you make me leery of taking them. I've been on sulfa before with no problem though.

      I'm sorry to hear that you had to go through all this. Wishes go out that you get completely better.

    • Victoria Baughman profile image

      Victoria Baughman 3 years ago from Michigan

      Your story brought tears to my eyes and weighed heavy on my heart. I'm so very sorry that you had to endure this. Thank you for sharing because it is so important that people become aware of this. Sharing, as your story can save a life!

    • savvydating profile image

      savvydating 3 years ago

      How horrible to go through all that pain---not knowing what is happening to your body. Thank goodness you finally got the care you needed. And to think that you still suffer effects from this disease. Well, I must say, you have a good attitude. I'm not sure if I could manage my emotions as well as you have. Thank you for sharing with all of us!

    • Radcliff profile image

      Liz Davis 3 years ago from Hudson, FL

      What a nightmare. I'm so sorry for what you went through. Thanks for being so brave and reliving this in order to educate others.

    • ologsinquito profile image

      ologsinquito 3 years ago from USA

      I also forgot to say how brave you are to go public with this, as you could save lives in the process. Sorry for all you've been through. Thankfully, you survived this ordeal.

    • ologsinquito profile image

      ologsinquito 3 years ago from USA

      Your story needs to be told. Voted up and shared.