Eczema and Steroids

While these times are tough, I know that it will not always be this way.

Maggie and I, before the withdrawals

I think it was in elementary school that I was diagnosed with eczema. I always had itchy rashes on my body, including scalp. This is when my topical steroid use began. Throughout the years, I would go through phases where my skin would clear, then flare. With each flare, the doctor would always prescribe a new topical. Some were non-steroidal but mostly they were. I had eczema all over my body, but it was highly concentrated on my face/ neck area and my arms. It was in high school that I started getting Kenelog shots to help the bad flares that the ointments didn't clear up.

After college, I lived in Eugene, Ore. for a couple of years. The first year I was there, my skin was relatively okay. During the second year, things started getting bad. I kept dealing with worsening eczema, and unlike previous times before, the topical steroids were not working that well anymore. More shots followed and even more prescriptions. By winter 2012 I was back in Tucson helping plan my wedding and dealing with doctors. I was so frustrated. I saw a dermatologist at the Mayo Clinic in Scottsdale, AZ and one in Tucson. They allergy patch tested me, did biopsies, and prescribed more steroids, gave me steroid injections, and put me on rounds of Prednisone and antibiotics. While the worsening eczema seemed to get a little better, the medicine only held it back while the medicine was in my system, then came back with a vengeance. As soon as I moved to California, things got way worse.

I now believe that after the large amount of steroids in my system within a 5 month period set off steroid withdrawals after I moved. Of course I just saw it as really inflamed eczema that I never had before. I couldn't figure out triggers to help it go away. This was the start of the red skin before it started spreading too much. I had a bit on my face and neck, arms and chest/stomach area:

 I noticed, however, that going out in the sun and eat gluten would cause an extreme flare with swollen face and neck and really bad skin oozing. My face has been varying degrees of swollen for almost a year now. This is what it was at it's worse:

We just couldn't figure it out. Was it environmental? The sun? my food? candida? California with all its pollution and people?? It just started spreading...

...and spreading...

...Until I decided to go to the urgent care during the summer. He just said yep it is definitely bad eczema. He didn't seem concerned with my extremely swollen nodes that had been that way since who knows when. He prescribed prednisone and a new one for me: a large amount of steroids through an iv. I also had antibiotics. Like before, I was fine as long as the steroids were in my system, but then it only got worse.

During Thanksgiving, we traveled to Tucson to be with our families. I started the trip off with a swollen face and another trip to the urgent care. This time, the steroid shot and prednisone had little effect. The swelling slightly went down and my skin started to clear somewhat, but that's about it.
Not a fun Thanksgiving:

I felt broken.

I couldn't sleep well at night because of the itching. The raised, painful and splotchy rash covered me from my head down to my ankles. I felt like I would go crazy with all of my itching. I spent the nights scouring the web, praying for answers to this. It wasn't until January that I found ITSAN (International Topical Steroid Awareness Network). I read the symptoms, saw the pictures and watched the video with Dr. Rapaport... it was me. I instantly felt a weight lifted. Steroids caused this, and now I need to heal.

I am currently in the middle of a flare within a flare. My symptoms that I am experiencing are: puffy face and neck, edema in my arms and legs, oozy and dripping skin, terrible chills, elephant skin, insane itching, insomnia and limited mobility. Nothing is giving me relief at the moment. Even baths cause me pain. Not fun, but I deal with it. Here are some current pictures of my skin. It is also all over my chest, stomach and back, but these are definitely the worst areas. I like to think of it as wearing a lovely red ski mask,  long sleeve turtleneck and red capris. hmm.....

 

 

 

As embarrassing these photos are, I really just hope that they help someone out who may be going through the same thing. Please visit www.itsan.org for information regarding this condition. They have medical articles and the forums has a wealth of information for sufferers. Not to mention support.

I would hate to end the post with scary skin pictures, so instead I will end it with a couple pictures of my little California family.

                  

                                  Maggie and Senge

Maggie and Brad

That's all for now,

Brandis

Heal me, O Lord, and I shall be healed; save me, and I shall be saved; for thou art my praise.

Jeremisah 17:14