Why I Decided to Taper Off Dupixent
Please note that I am not a doctor nor a medical professional. I do not condone anyone tapering off or withdrawing from Dupixent or any drug without their doctor’s approval or without knowing the possible side effects and danger. I am very well aware that I am tapering off Dupixent at my own risk.
Dupilumab clinical trials
I was one of the 2,100+ individuals who were fortunate to participate in the Dupilumab trials back in 2015. Dupilumab is now known as Dupixent to the general public. It is the first biological drug approved by the FDA for adults suffering with moderate-to-severe atopic dermatitis.
My experience with topical steroid withdrawal
When I got accepted into the Dupilumab trials, I was at my lowest point. I was bedridden from topical steroid withdrawal (TSW) and was desperate to try anything that could alleviate the unbearable pain and discomfort I was facing. I had lost a large portion of my hair and eyebrows. My skin was shedding profusely, cracked wide open, bleeding, oozing, and intolerably itchy. I was unrecognizable.
By this point, Dupixent was showing promising results. I had nothing to lose and was excited to reap from this medication.
Dupixent clinical trial experience
During the trials, I was 100% sure I was receiving the actual drug despite it being a "blind study" (when the participant is unaware if they are receiving the medication or placebo).
As soon as I would receive an injection, my skin would tighten up, heal, and the itchiness would reduce significantly. So by the time I entered the third phase of the trial in 2016, I was 95% healed.
Does Dupixent work?
I will preach it any day, anywhere, and to anyone… Dupixent is my miracle drug. I have gained a level of freedom that is unexplainable. I no longer wake up and look at my skin and then decide what I can do for the day. I no longer have to worry about how my skin is going to react if I go swimming or if I’m out in the sun for too long. I no longer have to worry…period.
Why I decided to stop using Dupixent
So why would I ever risk this new and amazing lifestyle? Despite all of the freedom this miracle drug has graciously granted me, I purposely and consciously chose to begin tapering off Dupixent in May of 2017. This was my journal entry for that day:
“…I decided I’m going to withdraw from Dupixent to see how “bad” my body is and if it’s still going through TSW.”
Healing from eczema
All in all, I wanted to see how my body would react without this drug; I wanted to see it in its most natural form so I can get an idea of how much healing I still need to do. Like many other eczema warriors, I don’t want to be dependent on a medication for the rest of my life. Plus, I was confident that my body was still going through TSW and wanted to see what symptoms were still lingering.
First time stopping Dupixent
The first time I withdrew from Dupixent, I lasted 20 days, just one day short of 3 weeks. At this point, I was supposed to inject myself every week and due to the withdrawal, I lasted 2 more weeks without the drug.
The leading side effect was extreme exhaustion. I was so tired at one point that I sleepwalked to the bathroom during work without even realizing it! I also got a cold sore on my lip and had minor rashes on my stomach, back, and on the inside of my thighs. These were all too common side effects I had experienced during TSW and in the beginning trials of Dupixent.
Still withdrawing from Dupixent
A little over a year later, I am currently on my 11th round of withdrawals from Dupixent. The longest I have gone without the drug was 8 weeks (5 weeks longer than my initial attempt at withdrawing). I still get the cold sores and the rashes, but later on in the withdrawal process - between the 5th and 8th-week mark. I am very fortunate that every time I inject myself, the drug takes about 3 days for it to kick in and then the round of withdrawal begins again.
How has it been?
It has been a beautiful journey of just fully observing my skin and seeing how far I can go without any type of medication. I am using these periods of withdrawal wisely – getting as healthy and as fit as I can be so that I can release the steroids that are stuck in the deepest areas of my body.
Regardless, I am truly living my best life! I have never been so happy and confident in my healing, as well as in the future for us eczema warriors! I look forward to sharing my progress with you all.
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