I've had eczema for my whole life.
I was hospitalized when I was six or seven years old because my eczema got infected (fever and ooze).
Testing determined I was allergic to acidic foods, eggs, dairy as well as environmental/animals and fragrance.
Throughout my childhood I was prescribed cortisone cream for my body, my mom wrapped me in burosol wraps and I took oatmeal baths to relieve the pain/itch. When I turned 13 I woke up with hives covering my entire body, including my scalp... I felt like an alien. A day or two later is when the itch kicked in and I thought I was going to die. No creams seemed to hydrate my skin, or not give me a rash except virgin olive oil... my skin drank that up.
Around this time we had just moved from Winnipeg to Edmonton and I saw a dermatologist who prescribed me prednisone 5mg and hydroxyzine 25mg at night for the itch. And it worked! It was a complete miracle. The only problem was that I couldn't go lower than 20mg or I my skin would freak out again. Two years into the prednisone I started to get awful side effects and decided to quit cold turkey. I managed to stay alive and keep my skin calm. However, this didn't last long. When I relapsed and needed to go on prednisone again, I turned to coconut oil (eating and bathing in), tanning, red light therapy, sauna, swimming in pools (to dry my skin out), Epsom salt baths..... and none of it made the smallest change.
At 18, I moved to Europe and ran out of creams and pills. When I was in Spain, my skin cleared up! I think it was the sun and heat.
When I was 23 and living in Vancouver I woke up suddenly and I couldn't see, my eyes were swollen almost completely shut, my breathe was wheezy and I had the alien hives again. This, I found out was due to the laundry detergent. So of course, we went back to natural wash and I was prescribed an epi pen and prednisone again. After prednisone, my skin cleared again. Still itchy and red but under control.
At 25 I traveled Europe again and was without any creams and pills so my skin broke down... a month without medication I couldn't go into the ocean or be in the sun as my skin felt like it was on FIRE and BURNING. So I flew home to Canada and had to go straight to the doctor... for more prednisone. I have seen every dermatologist worth seeing and no one can tell me anything besides "don't take hot showers, moisturize and don't sweat".
I saw an Iridologist and naturopath that prescribed me a bunch of vitamins. I knew these were of course good for me, but I saw no results. I changed my diet to a GF diet, and that too didn't work. The only new cream that did work was Protopic Ointment, which worked wonders. I was also bouncing around from creams/lotions (every one on the market) and none of those worked.
November, 2017 (26years old) my skin got bad again but I kept my spirits up and held on for about 15 days till my birthday where I went to the hospital because my entire body was red, inflamed and felt like fire again.
They prescribed me more prednisone. Right after Christmas I was hospitalized again and my skin felt like it was on fire. At this time they prescribed me a HUGE jar of Betaderm Ointment, and it worked! However, the moment I ran out of the cream my body went into full lash out mode. I had to quit my job and decided I would rest and take month to let my body detox. During this time, I felt like I did when I was a child. Except this time I was in the worlds worst amount of pain. I couldn't eat, I couldn't think, I couldn't even walk. My mom got a house nurse to come over and he prescribed me pain killers (that did not work). My mom would come over daily to change my oozy sheets, help me walk to the kitchen and back and keep me company. During this time I had to force myself to take the worlds most painful showers.
At the end of the month, we went to a new doctor (walk in) and he took time to examine me and come up with alternative options to help fix me. This is the first doctor to really look at me and take time instead of running into the room, telling me I have eczema and giving me more predisone or another cream that I've already tried (AND DOESN'T WORK). He gave me a heavy does of prednisone and told me I can't stop taking it because I have a chronic condition. He's right.
In June, worried that this all maybe because of a possible auto immune disease; my mom took me to see the doctors at the Mayo Clinic in Arizona. He determined that I didn't have any auto immune disease, which was a huge relief. I was told about a new drug, Dupixent that had no side effects and was a new miracle drug because it killed the protein in the body that created eczema. When I got back to Edmonton, I saw my dermatologist, who promised me a free trial. When I followed up the following month, they explained that had made a mistake.
I inquired more on the Dupixent shots, only to find out that the shots are not covered by my insurance. Dupixent will cost me $2700 a shot and I will need approx. 17 of them throughout the year.
I have been on prednisone for 13 years.. (since I was 14, I'm 27 now). Prednisone has started with the horrible side effects again, I've put on 25 lbs and lost half my hair... I'm depressed and have terrible anxiety about going out in public. I am desperate and trying to hold onto happiness and a good life.
Thank you for taking the time to read my story! With your help to reach my goal I will be able to afford the Dupixent injections that will change my life entirely.
Hoping to be this girl again, HAPPY & HEALTHY!
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