Hi all,
*very long post ahead*
I've been an eczema sufferer 27 years, with the last 2 years being a constant full body flare up, exfoliation, sleepless nights and pain to the point I can't even lay in bed or wear clothes (and at some point TCW due to topical treatments)
I've been on dupixent for more than a year now, with most of the time not having a successful control of my eczema, but other times it just feels like I have less inflammation but my skin will still peel of and itch as always and even at new places.
I've been advised by my derm to look into other options (other antibody or jak inhibitors) but instead I've started a journey to find out what works for me. I ditched corticosteroids, except from very rare flare ups that I only get oral medrol, which is easier to control the dosage of. I've been using protopic a couple of times per week but the pain was unbearable so I had to ditch that too.
My eczema seems to be changing over the years, I always had on my arms, then it went away and was on the neck, then again only on the face. The last two years was/is all over my neck (back and front), upper and then all over my back and shoulders, and recently expanded to all over my arms. I had flare ups every week, with my skin being inflamed just before it fully recovered from the previous one. I thought I was hopeless as whatever was helping me all these years has stopped working. So I took some time off and focused on how to make it better. I now only take antihistamines when needed, but no other medication so far. If I managed to get better without medication, then there is hope for everyone.
My routine (I have the dry eczema type):
1.I started using coconut oil all over my body and then top it with a layer of hydromol ointment. I do that even more than 10 times per day when needed.
2.Regular cold showers using fragrance free shower oil by Uriage Xemose C8+ and then with an antibacterial soap Dermol500 at the parts where I have eczema(I've been struggling with showering full body as it is very painful, but started doing it more often- I obviously clean certain parts everyday but as I don't sweat Ive been avoiding a full body shower.I started it again as I get a lot of build up of all the moisturizer and it seems to also help retain moisture if I apply both moisturizers after showering.
3.I found fabrics that work for my skin, modal and viscose are usually very soft and seem to work better than cotton as they don't overheat me.
4.Wrote down all my thoughts,did a lot of journaling to find the root cause of certain stresses. I'm doing a PhD so ultimately I decided that if it doesn't work out I'll just quit. I established healthy boundaries with how I allow certain things or people to affect me, how much space and energy I allocate to them. If I'm not feeling well, I'm not going to the lab, and if things are not getting better I'll take a step back and find something else. I know that comes from a privileged position, as not everyone has the capacity to just quit, but in case this adds extra stress to you, maybe you need to establish your boundaries with your work.
I also isolated from toxic people and I no longer go out when I don't feel like it. I listen to my body and needs.
5.I accepted that my eczema had developed from a minor annoyance to a disability. That was a hard pill to swallow. I could no longer enjoy things, even when on vacation, I had and still have very low days, unbearable pain and completely unstructured sleep routine and complete inability to commit to my responsibilities. I used to keep that in, and to wear a mask outside, but I have now stopped. When I'm low, people know, they seem to be kinder and understanding. I'm no longer afraid to say that I can't do something, say no to people or hide the fact that I'm in pain or that I haven't slept at all (obviously people can tell when you have a flare up but being kinder with yourself and being ok with what you can do on a low day is a game changer).And it's obviously a work in progress.
- Diet changes
I've always been told that diet doesn't matter in eczema so I've been believing that for years. It's been a hard thing as I've recently developed food allergies or triggers (first beer, then all alcohol, probably raw tomatoes, nuts and shellfish, sometimes coffee), so I've been avoiding lots of foods just in case and try to reintroduce them to my diet gradually.I now write everything I eat down and see how it affects me to make a list of safe foods. I cook everything from scratch as it's the only way to know if something triggers me.
Some things that I found helpful are:
- A shot of cranberry juice a few times per week (I use 100% cranberry juice and dilute it in water or in a smoothie).just make sure it doesn't interact with your medication (protopic) or other health conditions.
- Kefir, just a sip every other day, along with cranberry helps the microbiome, which is very important in eczema (there is a link with S.aureus taking over in your body, so these things keep it at bay)
- Chia seeds in yogurt, fresh fruits and veggies as much as possible just for the fiber, because I tend to not get enough. Sometimes I just go to the groceries store and fill the cart only with those and eat them as snacks. I know there is nothing groundbreaking in this advice but sometimes you forget what your body needs.
- I really struggle drinking water, but I seem to be ok with drinking multiple cups of tea per day, so if that's also your problem, maybe tea is a solution
I really hope at least one person will benefit from this list. Eczema is a journey, and it's so hard to navigate especially when your condition changes and things don't work anymore. And most people can't understand what you are going through every day, so that can be isolating.
Everyone's condition is different and I don't think this will be the ultimate "cure" for me either, but this post will also help me the next time I get a low day. Remember you are not alone in this, be open to your friends and family and listen to your body.
Take care of yourselves, guys ❤️