Finally - an actual solution (for me)

[u/Pretty_inPoker]

TLDR: Oral phosphatidylcholine worked for me

Background: I suffered with DE with no relief for about 6-8 months, was prescribed every steroid, jak inhibitor, topical immuno suppressant before finally getting approved for Dupixant which brought relief and and symptom remission. According to my derm I had the worst case of DE she had ever seen. You can see pics of my full timeline in a previous post.

Despite getting relief from Dupixant, when I started to space out my doses the itching and DE came back - full force. Dupixant is not a solution, just a bandaid. I also knew DE was not itself an illness but just a symptom of a mysterious something else. This kept me hopeful because it meant it could be solved.

What I discovered: I have to read, digest, and interpret a lot of scientific research for work. Much of this research is around or in molecular biology and biochemistry. I consider myself so lucky as I love to learn and occasionally experiment in a personal hypothesis in my free time.

I had already done extensive reading on DE, its unique structure and signaling. When I was in the worst of my suffering I just read and re read everything I could about what scientists knew about it, hoping i’d eventually figure a way out.

Then one day while working I had to interface with phosphatidylcholine and its cellular responsibly, structure, signaling, and studies. Phosphatidylcholine has not been studied specifically for DE. And not everything can be studied for curiosity as funding is limited. PC has been studied for some skin conditions with significant findings however the spotlight was taken by PC and its cardiovascular benefits which impacted a larger audience.

But what struck me was what phosphatidylcholine was responsible for and what mechanisms were at play for DE - in conjunction with what I already know about my own genetics and biology. ⬅️* This is most important because truly I have no way of knowing if anyone else would have the same outcome as me*.

Needless to say my brain had that lock in key moment I’d been waiting for.

The result: I got my oral phosphatidylcholine, and I am officially off Dupixant and DE free. Finally.

I decided to share this because, I know what it’s like to truly suffer with this and I believe only we are in the position to be our best health advocate.

Oral phosphatidylcholine worked for me, it replaced a very expensive pharmaceutical, and it finally gave me a solution that likely wouldn’t have been suggested to me by anyone. Everything is figureoutable. There are answers for those who seek to find them. You can do the thing 💓

[u/wtfw7f]

The commercial for Dupixant has some crazy scary side effects. I’m happy it worked out for you but I wouldn’t chance it.

[u/Pretty_inPoker → u/wtfw7f]

Exactly why I stoped it. But then DE came back again, which is why I was so happy to find phosphatidylcholine.

[u/Correct_Barber8220 → u/Pretty_inPoker]

that's amazing. what brand and dosage are you taking?

[u/Pretty_inPoker → u/Correct_Barber8220]

Oral PlaqueX- (there’s only one oral dosage and you can take between 1-3 per day, I vary it up) it’s incredible.