Been on Dupixent for 2 years now. Sharing what has been working for me.
Hello friends! I’ve been in the comments here for the past 2 years on and off sharing my eczema story, and I thought I’d share some updates, as well as tips and tricks I’ve found to help me for anyone who has recently been dealing with this, or has loved ones dealing with this.
Life summary: severe eczema my whole life (f22). As a child, open eczema wounds led to a staph infection turned septic osteomyelitis. I was on allergy shots (immunotherapy) between 7-14 which cleared my skin, but eczema came back with a vengeance when I was 20. Did full course of oral and topical steroids, which nearly developed into TSW. I was on Dupixent biweekly, but got switched to weekly due to ongoing flares.
- Being on Dupixent weekly is very painful. I have a low body fat percentage, so not a whole lot of skin to squeeze when I inject. Dupixent can be taken out of the fridge for up to a week before using — I take it out a day or two in advance, this significantly helps with injection pains.
- Skin afflicted with eczema is *fundamentally* different. Our skin cells are ‘further’ apart — think of skin cells as a brick wall, the cells being the bricks and lipids being the mortar. Our ‘mortar’ is the issue, we lack strong lipids in our skin which cause major moisture retention issues. This allows irritants of all sorts to easily pass through our skin, BACTERIA INCLUDED. Let me be a cautionary tale.
- See point above, staph colonizes our skin as a primary bacteria. I’ve seen posts saying to treat eczema as a staph infection, and many of the tips are very helpful — SkinSmart eczema spray works very well for day to day maintenance, and hibiclens soap is great for a biweekly skin ‘reset’ for me. I haven’t needed to use hibiclens since I haven’t flared in months (knock on wood), but use very sparingly since it is a medical grade antibacterial wash. Implement little things as such to prevent infections as much as you can.
- Point above AGAIN. I’m on Dupixent because JAK inhibitor medications such as rinvoq and opzelura have increased risk of infections as a side effect. That doesn’t mean don’t go on them, but biologics, at least to me, feel safer.
- Basic, but moisturize within 5 minutes post bath or shower. My skin can now tolerate scented products, but Vaseline works great for me (if sensitive to lanolin and sheep byproducts, do NOT use aquaphor). I also really like Eucerin’s baby eczema lotion. It’s an ultra thick formula, so very good for cold months.
- It can be, but it is NOT always a diet issue. I have celiacs, so trust, I’ve *been* off of gluten. My long term boyfriend has a dairy allergy, so I rarely eat dairy when we cook together, and just don’t eat a ton of dairy in general. Elimination diets can work, cutting out excess sugar has been helpful for me since Dupixent can cause fungal sensitivities (and fungus thrives on sugar!), but eczema isnt inherently a diet or gut health issue. Again, it can be, but my diet had no part in how severe my eczema is.
- Get sunlight (safely) if able. Go to a pool! Chlorine actually helps my skin a lot, which is why bleach baths (putting a capful of bleach into a full tub, it dilutes the bleach enough) are recommended.
- Dont ignore your mental health — stress can flare eczema, but eczema can cause depression, anxiety, loss of sleep, lack of focus, etc. Take care of yourself, and remember ultimately that your skin does not define you.
**EDIT**
I’ve noticed that I flare about once a month, always on my period. Definitely not as bad as they were pre-Dupixent, but I get perioral dermatitis every menstruation. Going on birth control has helped, but hasn’t fixed it fully!
Thyroid issues can be common triggers for eczema as well. Hashimotos and Graves both run in my family, however I’ve recently gotten my thyroid checked and haven’t gotten any results indicating of issues personally — but, this link has been proven.
If you have a child struggling with eczema, EMPOWER THEM! Teach them that kids may be mean, but kids don’t understand — I got bullied as a child, getting called ‘contagious’ or ‘diseased’. This anxiety of other people perceiving me horribly led to isolation as an adult when the flares came back, but looking back on it, the isolation was not worth it. Regardless of any skin condition, you (or your child) must learn self acceptance and self love!!!
The struggle is real, I pray every day modern medicine advances enough to find a cure to this!!!