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meigzilla

I did fall off the earth for awhile...

meigzilla
18 years ago

Everyone,

I fell off the earth, for good reason.

I had a severe reaction to ibuprofen and ended up with something called Toxic Epidermal Necrolysis. For a few days, my husband thought I was going to die. The odds were against me, 1 in 3 do not survive this. Basically, my skin was dying and sloughing off and I ended up at Loyal University Burn Center, being treated as a burn victim.

Here is a website about TENs, FYI.

http://www.emedicine.com/EMERG/topic599.htm

Here are pictures of me in the hospital. Be warned, they are NOT easy to look at.

http://photobucket.com/albums/v176/Nyanth/Hospital/

Password is 14abcd

The reaction started on April 27 with my eyes burning and itching. I was released from the hospital on May 12. I have a few months' convalescence ahead of me, but I am alive and doing very well. My skin is healing, though I do look like a burn victim because it is red and raw-looking in many places on my chest, back and face. No scarring, thankfully. However, my eyes are still healing and are very sensitive. My corneas and inner eyelids were completely blistered and I am extremely lucky to have my eyesight at all. It will be several months before they go back to normal (if they ever completely do). I have good days and bad days with my vision.

All this from an over the counter drug that people take every day. I can no longer take any NSAID-type medication and you can bet your life that I will be seriously watching what I put into my body and my childrens' bodies from now on. If you use NSAIDS, please reconsider. This is rare, but I am proof of what can happen. Loyola sees 2 to 3 cases of this per month, so it is out there, and the more mild form of it, called Steven Johnson Syndrome (the skin doesn't slough off) is far more common than the TENs. If you EVER take an NSAID and start to develop a rash and fever, or your eyes start to burn and itch after taking it, head immediately to an ER.

Take care and God bless,

Lesa (Meig)

Comments (20)

  • punamytsike
    18 years ago

    I am glad that you are recovering and thanks for sharing and warning about this. I had never heard of it.
    Hope you will get over it completely.

  • demifloyd
    18 years ago

    Lesa, I'm so sorry to hear of your ordeal, and we're glad you're recovering. Thank you for bringing this to our attention--I wish you the very best and hope your life gets back to normal very soon.

  • mitchdesj
    18 years ago

    How horrible for you; who would have thought, thanks for the info, and all the best to you on the road to recovery.

    Had you taken ibuprofen before in the past ?
    Would this reaction be triggered by some change in your body chemistry, another drug you were taking; are there warning signs before the reaction hits full blast or does it just invade you suddenly?

    You received such good care it seems, that must be crucial for a good recovery.

  • Chimeralife
    18 years ago

    Lesa, so glad you recovered. I had been thinking about you alot, wondering where you were.

    Hugs for you(real soft ones)and your family, take it easy, okay? Need anything? I'm right around the corner and off work this week.

    chimeralife

  • blsdgal
    18 years ago

    I saw a baby once in ER that looked like he had been scalded. He had Steven Johnson . I am so glad you are doing well. How scary. I wondered what was going on with you.

    As someone else said--so lucky you had such great care.

  • allison0704
    18 years ago

    Oh my gosh...how scary for you and your family! I'm so glad you were able to get through the first few weeks alive. I can't imagine! I take ibuprofen ALL the time for migraines. I will be reading the weblink and telling my friends to watch for symptoms also.

    Keep up your good spirits and know that we are thinking about you. Allison

  • demeron
    18 years ago

    Thank God you are all right. Puts building into perspective, doesn't it?

  • okwriter
    18 years ago

    How dreadful! I've never heard of this before and my family takes a LOT of ibu so I'll watch for this. Glad you are feeling better. Something like this sure puts life in perspective, doesn't it? I'll send good thoughts skyward for your continued healing.

  • sarahmakes6
    18 years ago

    I'm so glad to hear you'll recover. What a bizarre and scary thing.
    Blessings to you and your family!

  • chisue
    18 years ago

    I'm so sorry you had to go through this, but happy the worst is over and you are mending. I hope your eyes continue to improve as your body heals.

    How long did it take the MDs to make the diagnosis? When I read the facts page I could just see the pitfalls of normal procedures actually adding to the problem before the diagnosis. (antibiotics, etc.) What drugs could they give you?

    Glad you are out of the hospital and home. You and family must be exhausted. Do you have home health care?

  • Country_living
    18 years ago

    What an ordeal! I'm glad you shared this with everyone. Some drugs are taken for granted as being safe. Ibuprofen can be deadly!

    I worry constantly that someone will innocently give an OTC drug to my DD and not know that the HIGHLY common drug like ibuprofen would react with her prescription drugs and kill her.

    I wish you a speedy recovery.

  • Amy_H
    18 years ago

    Wow, how awful. I hope you are on the road to recovery. Were you taking something with the it, or do they know what caused the reaction? That is really scary.

  • Jodie_B
    18 years ago

    Lesa,

    I'm so sorry to hear of your health crisis but am happy you are recovering now. I will pray that you recover swiftly and completely, with no side effects. Good health is such a gift. Trust me, you will never look at things the same way - but that can be a good thing!

    God bless you ~

  • meigzilla
    Original Author
    18 years ago

    Everyone, thank you so much for the well-wishes and thoughts!

    I am doing MUCH better and even my eyes have been doing better so I am on the road to recovery. It was scary and I am very blessed to have pulled through it, but I did, and I am getting better every day.

    It certainly does put things into perspective, but I am hoping that it will also make me love and appreciate the new house all the more. I do know that family, friends and health are the most important thing out there (I needed a little clue by 4 upside the head about my priorities...which, believe me, I got). A house is *just* a building. That doesn't mean you can't be excited about it, but this certainly made me realize that the little things aren't something to get in a tizzy about.

    Take care everyone, and thank you :)

    Lesa

  • melsmom_hv
    18 years ago

    Gosh, you make the rest of us look like petty whiners...someone hand me that paintbrush!

  • carolyn53562
    18 years ago

    Lesa, I'm glad that you are recovering and want to thank you for sharing your story. I thought I'd also pass on something about Tylenol. The tylenol bottle warns about taking Tylenol if you drink, but most people don't notice it. Anyway, a co-worker's 26 year old nephew went on an all day canoe float with his friends down a river and drank a lot of beer. When he got home, he had a headache so he took some Tylenol. He went into liver failure and had a liver transplant, but died anyway leaving a wife and 6 month old baby. Although this is rare, apparently it does happen from time to time so be careful taking Tylenol too. Another problem with tylenol is unintentional overdoses. Apparently a safe does of Tylenol is 4 grams in 24 hours but a toxic does is only 7 grams--it doesn't take much to overdose either.

    Here is a link that might be useful: tylenol dangers

  • allison0704
    18 years ago

    It's good to hear you're doing better.

  • allison0704
    17 years ago

    Lesa,

    You haven't been around in awhile and I was wondering how you are doing. I think of you often and hope you are well.

    Allison

  • allison0704
    17 years ago

    Lesa,

    You haven't been around in awhile and I was wondering how you are doing. I think of you often and hope you are well.

    Allison

  • allison0704
    17 years ago

    Lesa,

    You haven't been around in awhile and I was wondering how you are doing. I think of you often and hope you are well.

    Allison