ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

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.

Comments

    0 of 8192 characters used
    Post Comment

    • pstraubie48 profile image

      Patricia Scott 

      4 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 imageAUTHOR

      Raevyn14 

      4 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 

      4 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 

      4 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

      Yves 

      4 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 

      4 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 

      4 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 

      4 years ago from USA

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

    working

    This website uses cookies

    As a user in the EEA, your approval is needed on a few things. To provide a better website experience, hubpages.com uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

    For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at: https://hubpages.com/privacy-policy#gdpr

    Show Details
    Necessary
    HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
    LoginThis is necessary to sign in to the HubPages Service.
    Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
    AkismetThis is used to detect comment spam. (Privacy Policy)
    HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
    HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
    Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
    CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
    Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the googleapis.com or gstatic.com domains, for performance and efficiency reasons. (Privacy Policy)
    Features
    Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
    Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
    Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
    Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
    Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
    VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
    PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
    Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
    MavenThis supports the Maven widget and search functionality. (Privacy Policy)
    Marketing
    Google AdSenseThis is an ad network. (Privacy Policy)
    Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
    Index ExchangeThis is an ad network. (Privacy Policy)
    SovrnThis is an ad network. (Privacy Policy)
    Facebook AdsThis is an ad network. (Privacy Policy)
    Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
    AppNexusThis is an ad network. (Privacy Policy)
    OpenxThis is an ad network. (Privacy Policy)
    Rubicon ProjectThis is an ad network. (Privacy Policy)
    TripleLiftThis is an ad network. (Privacy Policy)
    Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
    Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
    Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
    Statistics
    Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
    ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
    Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)