Lupus – A New Reason To Not Leave Home

I’m assuming that you have read the post I wrote called My Panic Attack History.  If you haven’t, that’s OK, but it will bring you up to speed on where I am now.  One of the things I left out of that post is the fact I was diagnosed with a type of Lupus that affects my skin.  It was February of 2007 and the little sores I was getting every now and then were getting out of hand.  I had very briefly decided to go back to seeing a psychiatrist who put me on xanax XR and some sleeping meds.  He also wanted to try a medication for people with bipolar.  He explained that he didn’t feel I had bipolar, but rather some of my symptoms mimicked bipolar and felt it was worth a shot.  I thought it was kinda silly, but I didn’t go to medical school in the Caribbean like he did.  I also felt anything was worth a shot.

The medication I was on, which the name escapes me right now, has a very small possibility of causing something called Steven Johnson’s Syndrome.  I was familiar with it only by name, because I’d taken a few continuing ed courses on rare skin conditions.  I couldn’t remember the difference between that one and any of the other ones I learned about back in the day.  The short layman’s definition of SJS is basically when your entire body gets covered in third degree burns.

Once I was on this medication for a few weeks, my face, chest, and shoulders broke out in sores that felt like they were always on fire.  I was completely covered in them.  Children in the waiting room were whispering to their parents saying “What’s wrong with that lady?”.  I had read up plenty on SJS once the sores started appearing, and while it sounded a little like what was going on with me, I was missing some key elements of the diagnosis.  Still, at the next psychiatrist’s appointment when he saw my face and chest, he insisted I go to the ER to find out what was going on.

Hours and hours later, I was released by a doctor who I suspect only recently quit breastfeeding.  He didn’t tell me what it was, but that it wasn’t SJS.  That was fine enough for me.  I’d been keeping my mother updated on what was going on, who in turn called my brother the Harvard doctor.  My brother and I are very close and care about each other very much, but we hardly ever talk.  We just don’t have a ton in common, and we’re both totally OK with that.  So when I saw his number pop up on caller ID, I knew my day was about to take a turn for the worse.

He told me I absolutely had to go back to the ER.  If it wasn’t SJS, I needed to know what it was.  And since the doctor hadn’t done any biopsies or tests of any sort, just a look and see,  it was critical to ask for a dermatologist.  I argued with him for a while.  Two doctors had both said it wasn’t SJS, so what was the problem?  Arguing with my brother is a pretty futile endeavor, which also may be part of why we don’t talk very much.  So I canceled my dinner plans and went back to the ER, arms folded over my chest like a two year old.

Another lifetime spent at the ER and I was lucky enough to get the attending dermatologist for the best hospital in San Diego.  She and her residents said it was definitely not SJS, but that they were concerned about the painful sores everywhere.  A biopsy was done and later I found out I have a type of lupus.  The same kind that girl from America’s Next Top Model had.

I was given some cortisone creams, but they didn’t work.  From there on, I stopped seeing the psychiatrist and the dermatologist.  And I stopped leaving the house unless I absolutely had to.

I don’t want to toot my own horn, except to say that I have always been a decently attractive woman.  I take a lot of pride in my appearance, even when nobody sees me because I’m at home all the time.  Add the sores on my face to the other history of anxiety, and things got a lot worse.

Today the sores are still there, or scars where the sores used to be.  But they’re not as bad.  They aren’t even really painful anymore.  I can’t use concealer on them, but I am able to direct attention to other areas of my face.  I still use my cortisone creams in vain, too.

2 Responses

  1. hmmm
    disappointing that you still have nothing that helps.
    this sounds like discoid lupus.
    i have systemic lupus (SLE)- sounds like you need a followup with a dermatologist, to let them know the cortisone isn’t working. maybe there are more treatments out there.

    i totally understand getting stared at because of the lupus. i had to walk with a cane, and got uber-thin (like 80 pounds) and very weak, which in my 20s, made me look like a circus freak. people really would stare. i started just staring right back sometimes.

    annoying as it may be, your brother was probably right to send you back. i mean “it’s not SJS” is not an answer!

    have you checked out the lupus foundation of america site? there may be some good resources and even a chat board about lupus and drugs people have tried.
    a couple other good communities are
    and i found one recently that has a great section “treatments” where all the users list the stuff they’ve tried and whether it worked or not.

    best wishes

  2. Carla,
    Thank you so much for a very thoughtful comment. Yes, the lupus I have is discoid lupus. I was supposed to be blood tested for SLE the following week, but I was/am scared to find out. I was in the middle of switching insurance companies at the time and didn’t want the official diagnosis in case they denied me for it. At least that’s the rationalization I used at the time.
    Thank you for those links as well. I’ll be sure to check them out right after I finish typing this. I’m really sorry to hear you are struggling so much with this – SLE can be quite horrific. You are in my thoughts.

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