“FDA approves ‘game-changer’ drug for serious cases of eczema” I read in 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.
“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 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 38 long years fighting with 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 have to wait one more year to get access to this drug. I was devastated.
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. That time Dupixent was not approved yet in Switzerland but I learnt that the hospitals have access to it. I was suffering so much for the last couple of months that I was ready to do everything to get this miraculous drug.
On my first visit with the doctor, I made it very clear that I am interested only in Dupixent and asked him if he can get it for me. His confirmation brought me a huge relief. Few hours letter 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 for covering the costs. It didn’t take too long to get a 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 few more days, but finally, on December 9th I’ve 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. I felt so grateful for all of this! 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 how to administer Dupixent. It was out of the question that I will give myself the first injection, I was too excited and afraid at the same time.
On the 10th of December 2018 at 10:23 a.m. I’ve got the loading dose of the first biological drug for severe atopic dermatitis. The itching disappeared almost instantly. Within the next few days, my eczema started fading away, the wounds were closed, my body was healing. I was so happy that I decided to call the day of injection, my day of rebirth. I left the hospital a few days later and since then every two weeks I was administering Dupixent in my belly. The first 2 months my life was 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.
The things started changing from 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 reminded more of a zombie than a human. The treatment proposed by ophthalmologist didn’t bring me the relief I was craving for. My vision was deteriorating. Soon I started experiencing also the joints pain. There were days I couldn’t open the bottle of water or the tube of toothpaste. I was terrified.
Next, the weird, red rash appeared on my face. It was different than eczema because it didn’t itch. It reminded and felt more like a sunburnt. My skin was swollen and boiling hot. The rash was spreading fast and soon it covered my neck, the upper part of my chest and beck. My doctor was puzzled because none of the treatment worked. We tried antibiotics and antifungal drugs, but the rash was still there. During this period, I kept injecting Dupixent until one day it hit me: my rash got 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.
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. I was crying all days long and when I wasn't crying, I was sleeping. I lost any will for living. The days were passing by and I wasn't getting better. Until one day my hubby told me he can’t look any longer how I suffer and wasting my life and encouraged me to sick a help.
I feel very blessed because our family doctor recommended me a great psychotherapist, who is a 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 the 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
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 eczema, in such an extent as before the hospitalization, has never come back. Since I exhausted all my medical options, I had no other choice than start to listen to my body and change the habits that were not serving me.
Although Dupixent didn’t turn out to be my miraculous drug and left a lot of mess on my face in form of rosacea and perioral dermatitis that I have never had before, I don’t regret trying it. I learned an important lesson: there is no miraculous 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. This is what I made my priority now. Another option is to wait until the new miracle drug will appear on the market, but I think I will pass this time.
As always I'd love to hear from you. Share your story with Dupixent or any other treatment that you tried.