Dupixent?

The condition started with me in the fall of 2023 and was actually detected shortly after that. Through the discomfort and the ups and downs and various creams and ointments and prednisone cycles, I just started the Dupixent treatment December 1st with bimonthly follow ups. Prior to starting the treatment it did seem to be in a state of remission, however flare ups were anticipated and the program started. I have been told that it takes 2-3 months for Dupixent to have effect and I am now hopeful that will be the case as I approach the first month.

@camtastic
I am hoping the Dupixent works for you. I have the same condition andI am highly sensitive to the side effects of Prednisone. Dupixent is patented so I understand there is no generic. Cash price is $3500 per moth and my insurance says $1200. Still not really affordable. BIG PHARMA is greedy.

@anc50
Still to early to determine success or failure and maybe due to my age and coverage the Dupixent is affordable. The odd thing for me was that while the decision was to try the Dupixent well before the first injections my condition seemed to be in remission so now I’m not even sure how effective it is or will be. How long have you been afflicted and I agree with you that the prednisone, while definitely effective, is not a long term answer.

After two years with some relief using Dupixent for my BP, I just started an additional treatment: Tacrolimus Ointment. After just a few days I am surprised at the relief and disappearance of welts/lesions. Has anyone else tried this ointment.? In pill form it is used to moderate organ transfer rejection. It is also an autoimmune ointment and not a steroid, many of which I have tried before.

@kaykiltubrid Thank for the input. I have mucus membrane pemphigoid only in my mouth but I do have the itching. I was prescribed dupixent also waiting to get approved. So glad to see someone comment on taking it and if you had side effects because im scared to take anything. I was already prescribed 2 different prescription mouth washes. Its crazy how this just came on. I do have a question ive been really exhausted all the time. Has this effected you in this way?

Hi there,
I'd weigh the options carefully before going on Dupixent if I were you. My doctor suggested I go on it to resolve some ongoing eczema, but upon doing some research it sounds like a significant number of people are having serious systemwide side effects; here's just one of many Reddit pages that I found on that: https://www.reddit.com/r/eczeMABs/comments/xyrro5/permanent_damage_from_dupixent/.

@geekygirl9 wow so sorry for all you are going through. I definitely are scared now I don't know what to do now. Prayers for healing 🙏

@ali119 prayers for you, too! To be fair I also read that there are a bunch of people that swear by Dupixent and say it gave them their lives back, and mucus membrane pemphigoid definitely sounds like something that would need to be treated very aggressively, so go ahead if that's what you gotta do, just thought you should be aware of the risks.