My Love Story With Dupixent Didn't Last Long
“FDA approves ‘game-changer’ drug for serious cases of eczema” I read New York Post in March 2017. I immediately jumped up from the sofa and ran to the home office where my hubby was working to share this news with him.
Excited about the possibility of a cure
“Finally, I will get cured.” “I can’t wait to get this drug”. “I need to talk to my doctor” “Should I take the appointment with my doctor?”, “I hope I will be able to afford this drug”. “I need to check when it will be available in Switzerland”, I was screaming and not letting my hubby to say a word.
My thoughts were flying through my head with the speed of light. I got super excited because I was waiting for this news in my 38 long years of fighting severe atopic dermatitis.
I started googling the answers for my questions and as I was reading them one by one, my joy was fading away. I couldn’t believe I would have to wait one more year to get access to this drug. I was devastated.
As my eczema worsened, I was willing to do anything
Fast forward to December 2018, after 4 months without sleep and my body almost fully covered with eczema that stopped responding to any treatment, I was admitted to the Dermatology ward of University Hospital of Geneva.
At that time Dupixent was not approved yet in Switzerland but I learned that the hospitals had access to it. I was suffering so much for the past couple of months that I was ready to do anything to get this miraculous drug.
On my first visit with the doctor, I made it very clear that I was interested only in Dupixent and asked him if he could get it for me. His confirmation brought me a huge relief. A few hours later, my doctor’s assistant presented me the application policy and promised me to do everything she can to get this new drug for me as soon as possible. In the meantime, my doctor sent the documentation of my case to my health insurance asking to cover the costs.
Optimistic about a new treatment
It didn’t take too long to get their positive reply. I was relieved again because it meant we didn’t have to borrow the money around or touch our savings to finance the treatment. For the drug itself, I was waiting a few more days, but finally on December 9th, I got the news I was waiting for so long: “We’ve got two boxes of Dupixent for you. Our supplier offers you both boxes for free.”
These words were like music to my ears. My first injections were planned for the next day. I called my husband and we agreed he will come to the hospital so the nurse can train him on how to administer Dupixent. It was out of question that I will give myself the first injection, I was too excited and afraid at the same time.
Finally getting my first dose of Dupixent
On 10th of December 2018 at 10:23 a.m. I got the loading dose of the first biological drug for severe atopic dermatitis. The itching disappeared almost instantly. My eczema was fading away, the wounds were closing, it was obvious to me that my body was healing. I was so happy that I called the day of injection, my day of rebirth. I left the hospital a few days later and every two weeks I was administering Dupixent in my belly.
The first 2 months were a fairytale. I was falling in love with this free-from-itching lifestyle and planning the things I couldn’t do for so many years because of eczema.
Eye problems and a new rash on my face
Then things started changing around the 5th injection. In February, I started experiencing the side effects. First were my eyes (severe conjunctivitis). My eyes became so sensitive to light that I had a hard time to open them in the morning.
I couldn’t work, because the computer made them even more irritated. They were so red and painful, that I was more like a zombie than human. The treatment proposed by my ophthalmologist didn’t bring me the relief I was craving for. My vision was deteriorating.
Soon I started experiencing joint pain. There were days I couldn’t open a bottle of water.
Allergic reaction to Dupixent
Next, a weird, red rash appeared on my face. It was different than eczema because it didn’t itch. It reminded and felt more like a sunburn. My skin was swollen and hot. The rash was spreading fast and soon it covered my neck, the upper part of my chest and back.
My doctor was puzzled because none of the treatment worked. We tried antibiotics and anti fungal drugs, but the rash was still there. During this period, I kept injecting Dupixent and one day it hit me: my rash gets more intensive just after the shot… We did a biopsy. My doctor took a piece of my skin from my neck and send it to the laboratory. After 7 days we had the answer: very strong allergic reaction to Dupixent.
Heartbroken and disappointed
The moment I heard this my heart broke in gazillion pieces. Obviously, I decided to stop the treatment. All the hope I put into this drug turned into the biggest disappointment of my life.
I broke down like never before. For the first time in my life, I couldn’t put myself together. The days were passing by and I couldn’t stop crying. Until one day my hubby told me he can’t look at me suffer and lose my life any longer and encouraged me to seek help.
Seeing a therapist
I feel very blessed because my family doctor recommended me a great psychotherapist, who is dermatologist in the same time and who dedicated her whole life to study the emotional and psychological impact of skin conditions on patients and their quality of life.
From the very first visit, I knew we took the right decision. She suggested art therapy. That time I was already working on FEEL GOOD COUTURE™ and I felt it had a soothing effect on me, so soon my side project became my therapy.
Accepting that there is no miracle drug or cure for eczema
Slowly I was feeling better and stronger every single day. At the moment of writing, it’s been almost a year since I stopped Dupixent.
My skin is not perfect, but the extent of my eczema before the hospitalization, has never came back. Since I exhausted all my medical options, I had no other choice than to listen to my body and change the habits that were not serving me.
Although Dupixent didn’t turn out to be my miracle drug, I don’t regret trying it. I learned an important lesson: there is no miracle drug that will work for everybody. Eczema is a tricky beast and requires personalized treatment. Knowing your body well and avoiding the triggers is probably the best way to keep your skin calm. At least until your miracle drug appears on the market.
Share your experience with atopic dermatitis treatment.
On an average day, how would you rate your level of anxiety related to atopic dermatitis?