I am a 40 yo white male. While I do not wish for anyone else to go through what I have it would be nice to talk with some one who has. Thank you for taking time to read about what happened to me.
January 19, 2011 will forever be imprinted on my brain. It was the day I was prescribed and started taking Celebrex. I was given a sample starter pack by my Ortho Dr to help me with lingering neck pain(car accident) that was keeping me out of work. I just wanted to go back and get back to living again. I found great satisfaction in my job and actually looked forward to going to work each day (I am not crazy!) I knew that this injury would most likely trouble me a bit for the rest of my life after watching my mother come back from a similar injury. I took one pill with my dinner that night and started my wait until the medicine began to build up in me hoping it would do it sooner as I was to return to work in 10 days. The second pill I took with lunch because I worked nights and thought if I took it before work it would benefit me more. The next day after I had been out of bed for a while my right leg felt "funny" it looked a bit swollen and I had remembered reading that Celebrex can cause swelling of hands and feet so just dismissed it as a side effect that would probably go away with time. The next day I woke up and when my feet swung to touch the floor I could feel them balloon. The skin got so tight I thought it would split open. My right leg was double the size of my left and was traveling up my thigh! As the sun came up I noticed my left arm and right side of my face was swollen also. As soon as the Ortho office opened I called and explained what had happened. They advised to take the maximum dose of Benadryl and discontinue use of Celebrex. Later that day they called back to say "When swelling goes down call the office for an appointment." The swelling did not go away it just seemed to go down, a little.
A week had went by and I woke up feeling very ill. I had a slight fever, my body ached all over and my chest was wheezing. My nose was like a faucet and my eyes got all puffy and red. I thought to myself "Great time to get the flu" little did I know it was not a cold at all. The swelling and the "flu" were tell tale signs of a very serious allergic reaction. The "flu" lasted about 5 days and then just a cough and blah feeling for another week. During this time the swelling had gone down some but my shin was turning purplish red in color and hurt to touch. The cough was still there and I began to get pains in my chest. I called the Dr but they said to go to the ER as they would be better able to test and treat me. 12 hours in the ER and a number of tests later (some extremely painful) 3 Dr's approached me taking turns looking at my leg which was now a very dark purple and ice cold also my left leg was now showing the same purplish color. They said it was Vasculitis and to follow up with my PCP. No medicine, just keep it elevated and drink lots of water. The way they were talking to me made me suspect of their diagnosis. Something just didn't feel right.
I called and got in to see my PCP and he put me on Prednisone and pain meds with instructions to come back in 10 days. 10 days later and I am no better I am actually getting worse. The swelling is increasing again, the color was getting darker and growing each day. He looked at me and said "I need help!" I got very worried as my PCP has always been so confident and able to diagnosis with ease and now he is telling me he doesn't know what to do?! He referred me to a Neurologist saying "I really don't know. Maybe MS?"
At the same time writing me a prescription for a walker and a wheelchair. What? I am only 39 Doc. You must be joking. I wish he had been.
Finally on April 6, 2011 I get an appointment with a Neurologist. So I go into the room and wait for the Dr. When he opened the door it appeared as if a light had gone on. He didn't say much at first but just went over history and symptoms and then he looked at my legs. He politely asked if he might show his intern my legs which I allowed. He came back with her and said "You have to see this. I have only seen this once before but I am positive this is Stevens-Johnson Syndrome". He turned to me and sternly said "Never EVER take anything containing sulfa again!" adding in "It will kill you if you do" He tried to explain what was happening, what would happen and not to expect to feel better for about 6 months to a year. All of this meant nothing to me at that moment in time. I felt I was on death's door and I had already knocked.
The next day I went back to the office and was given a box of medical supplies and medications. The nurse went over a booklet on IV care (what the heck?) and began showing how to keep it flushed (they can't be seriously expecting ME to do this?) and clean. She put the IV in (wait! I don't know if I can do this!) and then had me demonstrate how to adjust the flow rate and how to get all the air bubbles out (OMG! Make this stop!). 5 days of Solu-Medrol and Avelox through the IV and then 5 days for oral Avelox and a whole bunch of days tapering down from the steroids. The hardest part was taking the IV out by myself 5 days later but it felt so good to have that thing out of my arm.
I must say that while the medication was supposed to get rid of this thing attacking me it seemed like it just stirred it up. All of a sudden I could not understand conversations with people. I know I knew the words but they held no meaning. Sentences just meant nothing to me. The burning that had been just on my right leg now was everywhere that I had swelled up and brought it's friend stabbing and shooting pain with it. Every muscle in my body started to cramp up real hard and then release to spasm. I had trouble eating from sores in my mouth and throat. My chest felt full and like it was dripping on the inside. I had trouble seeing out of my right eye because it to would just burn 24/7. My right foot felt "dead" and cold (still does to this day). I was a mess. I couldn't be left alone because I would fall from vertigo. The burning would get so intense on my face I could not find up, down or side ways despite holding on for dear life. I know there were many days I spent just looking out the window wondering if I was going to make it through this and IF I really wanted to. Everything I had researched on Stevens-Johnson Syndrome scared the heck out of me!
Each trip to the neuro would get me a new medication to "try" (like I wanted to take another medicine again) and see if they helped. Lyrica was working but because of swelling issues I had to stop taking it. Everything else they tried to give me just had some side effects that I could not tolerate so despite having to face the burning sensation in my face again all medicines were stopped except Klonopin for the spasms (only works if you take it as needed instead of on a schedule). Along with medicines came tests. MRI's, Lumbar Puncture, genetic testing, EEG's, evoked potentials...the list goes on. The MRI result troubled me somewhat after being told "You have a significant loss of white matter and demylenation" 5 months of being scanned and poked with hundreds of needles ( 1 round of labs took 13 tubes of blood in one sitting) All I got was "I don't know" and "let's try this" and my favorite "Could it be an advanced stage of MS, probably, but I am not convinced". Everything came back to a procedure the neuro called "empyrical treatment" removing all of my blood, stripping it down to nothing and then putting it back in (after they put stuff back into it otherwise I'd die). This while he joked about some insurance not covering then $10k per treatment and an estimate of 10 treatments to be done was it for me. I decided I had had enough.
Here we are a little more than a year later. Some things have gotten better and I have been able to accept the "new" normal that has manifested for me. I don't drive anymore because I never know when I will be hit with cognitive issues. I can't walk without a wheeled walker and even then it hurts a lot. This affects my ability to care for myself and am thankful I have someone here to help but I struggle to stay as independent as possible. I know a motorized wheelchair or scooter would give me some freedom to go outside again but I refuse to be put in one for fear that I'll never walk again. That and I no longer have healthcare coverage. April of 2013 I will be eligible for Medicare and hope that I can find some answers at that time. I tried to get some treatment but what I get on Social Security doesn't cover my monthly expenses now and here in Florida, Medicaid is a joke. No one will take it and watch out for the places that do. Also due to how rare SJS is most Dr's don't even want to see me citing various reasons (too busy, no opening for months). So for now, I deal with this constant burning, stabbing pain and look forward to the day the nerve endings just die off (slowly happening now) and I can have the eery "dead" feeling replace it. Unfortunately that "dead" feeling comes with a price of not being able to use the area affected. I can no longer left up my left leg for this reason. It just sort of drags along as I walk with my walker.
Thank you so much for taking time to read my story. It doesn't end here but we have to wait to see how this thing turns out.
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