I don't go much, what is the point? I have got more answers from you all. I know they see few patients with this. It's not a big priority. My 6th dermatologist was able to diagnose. That's grim. I take a benadryl so I can sleep, some salve. Going to try baking soda!

Oh, I am just sad to hear that most all of us are in a type of limbo w/this dreaded disease, & the specialists don't hear our pleas of the help we need! Life is hard enough without any treatment for this rare, no cure Hell on Earth! I mean please FDA release our last hope for possibly much-needed relief as this disease has consumed us sufferers of what lives we have left! I believe in 🙏s, but as of yet it must not be God's will. ❤️😢

I’ve been on Dupixent since October. It really has been helping with the itch. I’m still getting flareups but they don’t last as long.

I haven't given up. I follow the dermatologist's recommendations and so far what she prescribed is working. I like that she collaborates with me on the treatment.

If you want relief try this product "Powerheal" it helps to heal lesions..... I've healed 50-60% and am working on the rest... FANTASTIC.... NO ADHESIVE ONES...
Tom