Common Questions I Receive About Dupixent
Hey family - It’s been a while since I’ve updated you or anyone on how I’ve been doing from my withdrawal from Dupixent. I feel as though I am always sharing my story since more and more people are finding out about Dupixent and are interested in receiving it. I have also gotten a few questions that I have never answered before, so check them out below!
Have you used Dupixent (currently or previously)?
But before we start...
For those of you who don’t know my back story with Dupixent, please check out my previous blogs ("12 Weeks Without Dupixent" and "10 Months Without Dupixent") on how I got started with Dupixent and why I am no longer on it. This article will be slightly different in that it’ll already assume you know my back story. It'll also be in the form of question and answer.
Well, here we go!
At which point in my eczema journey did I start Dupixent?
I was 22 years old and going through topical steroid withdrawal (TSW) when I had decided to go on Dupixent. I was about a year and a half into TSW and desperate for healing. Before TSW, I was applying topical steroids a few times a week for as long as I could remember.
When was the last time I used Dupixent?
The last time I injected myself with Dupixent was around September of 2017.
Why did I choose to stop using Dupixent?
Because my skin was 100% clear and I wanted to see how my body would react without it. My original goal is to heal as naturally as possible, so I never had the intention of being on this drug (nor any drug) for the rest of my life. I used Dupixent simply as a catalyst and as a way to get me on my feet so I could build habits and a routine that was manageable even after I got off Dupixent.
At which point in my Dupixent journey did I start tapering off of it?
I began tapering off Dupixent about after a year of being on it, so around the summer of 2016. I also started tapering off when my skin was 100% clear for a consistent period of 6 months or more.
How did I know I was ready to wean off Dupixent?
I had no idea I was going to choose to wean off Dupixent, especially not that early on. And there was nothing on my calendar to let me know that I was "ready." It was literally an instinct I had one day and continued to follow through with it. And here I am today, 3 years later without it.
How did I know my TSW was under control?
I also had no idea that my TSW was under control. Again, I didn't "plan" to wean off Dupixent, at least not at the time I had. I had no idea how my body was going to react and whether my TSW was going to come back in full throttle. I guess I really trusted myself and God at that time. I knew that whatever I chose to do, I was going to be okay. It was all temporary.
Did I experience facial flares?
No, this was actually a side effect that appeared after Dupixent went public. I had not seen or heard of facial flares while I was on their clinical trials.
What side effects did I experience?
I experienced cold sores and eye issues for about the first 6 months of being on Dupixent. At one point, I was getting cold sores every 2 to 3 weeks consistently. And I would experience blurry vision, red and itchy eyes. For me, the side effects didn’t really bother me or have me second guess my decision with Dupixent because my skin was healing further than I could have ever imagined!
How quickly did I see improvements on my skin when on Dupixent?
I first felt a difference internally before I saw a difference physically or externally. What I mean by that is, after about an hour or so of being injected with Dupixent, I would experience a reduction in itchiness and that very night, experience better sleep. I started to see a physical difference in my skin after being on Dupixent consistently for about 3 months. After about 6 months, my skin was 100% clear and back to its original skin color. No itchiness, eczema, or sleepless nights in sight.
Did my eczema get worse after withdrawing?
No, my eczema didn't get worse, but I did experience minor and manageable eczema flare-ups. The eczema I did experience was nowhere near what I had experienced before Dupixent.
Did Dupixent help me heal with TSW?
ABSOLUTELY! To this day, 5 years later, I have not experienced my body going through TSW. It's like it cut the TSW healing journey short and catapulted me into the finish line.
Do I still get eczema?
Yepp. I’m currently dealing with a flareup on my left pinky for some reason. And I also tend to get contact dermatitis more frequently. Although the severity of my eczema flares has decreased by 95%, I still do experience it here and there.
What’s also interesting is that I feel as though I am able to better manage my eczema. For example, if a flare-up is about to occur, I feel as though I am able to control how I choose to respond to the itchiness versus just react immediately to panic and uncontrollable scratching.
Is there anything I did differently while on and off Dupixent?
Yes, because I had that freedom, consistency, and stability that Dupixent provided me in regards to my health, I was able to test out different things. For example, I played around with my diet, trying veganism for 9 months, testing out intermittent fasting, and so much more.
I also built what I call "healing mindset practices" during this time. This includes meditating, journaling, reading, exercising, and pretty much anything that brings me joy, love, and peace. This has been something I have built into my regular routine to keep the healing going.
If I could go back in time, would I change anything about my experience with Dupixent?
No! I don’t regret trying Dupixent not one bit. I also don’t regret tapering off of it and officially withdrawing from it. This drug gave me the courage and the foundation I needed to have the confidence within myself that I could heal without it and that life beyond eczema was possible. It changed my life!
Do I recommend it?
I recommend TRYING whatever treatments you feel will support you in better managing your eczema. I'm a big believer that if I want to see change, I must choose to do something differently. For me, that was trying Dupixent.
If you don’t see a question I’ve answered, please drop them in the comments below and I will get back to you! :)
Have you checked out our new Community Hub?