Luck with insurance for off-label dosing? Refractory urticaria

Hi there! I've been taking Dupixent 300mg autopen every other week since August 2025, prescribed by my dermatologist for chronic urticaria after months of trying to manage it with antihistamines and even singulair (that one did not go well). Though I also have an EoE diagnosis where the dosage is usually once weekly, I take it every other week because it is prescribed and managed by my derm for urticaria. (Though last year she initially filed it under atopic dermatitis because she was worried I would be denied for CSU, since the FDA-approval for it was so new. She's since changed it to CSU, though, to prepare for what's going on below.)

DOSING BACKGROUND AND CONUNDRUM: Anyway, at first, the dupixent combined with the 40mg cetirizine was very effective for my hives. However, after a few months, they started breaking through again (which I have been told by someone off-the-record is somewhat common in refractory cases), until finally late this May it was quite bad again and I wasn't willing to keep existing like that. Therefore, my dermatologist put me on an 8-week off-label trial of 300mg once weekly, using samples from her office. While I am still having breakthroughs starting on day 4 after each injection, they are significantly reduced on this once weekly protocol (and no longer create huge plaques over massive planes of my body, which I consider a win). I see my dermatologist for a check-in on Monday and we will discuss whether to try to get insurance approval for 300mg once weekly under the CSU diagnosis.... Unfortunately, because my EGD showed my EoE is in histological remission right now (yay! I'm also on a strict allergy diet for 3 of the 6 most common EoE triggers), my GI isn't willing to prescribe it once weekly, which I understand.

THE QUESTIONS: Has anyone had luck getting Dupixent prescribed more frequently than recommended for their condition, or off-label? Regarding insurance, and the Dupixent My Way program? What does it take? I'm afraid my insurance is going to take ages or deny it, and then I'll start losing my "steady state" concentration and be back to (or worse than) where I started. What's the liklihood of them approving it?

^(Because I'm also trying to get into a clinical trial right now (though I'm not optimistic as its been nearly 2 months since my first call), I'm trying to put off switching to Xolair or Rhapsido so I remain "naive" to some of the heavy-hitters to improve my chance of selection. But if insurance won't approve the 300mg once weekly, I don't know what else I am supposed to do.)

Thanks for any thoughts you have, or any experiences you may be able to share!

Posted Jul 3, 2026, 6:12 PM UTC

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