u/Otter-Rutabaga7981

Hi there! [Photo rule: Photos included to show condition only, but I am NOT asking about the condition. I'm asking about insurance coverage, so I tagged it "general enquiry." No photos are NSFW as they show abdomen, arms, neck, with any potential borderline NSFW areas covered.] Anyway, I have chronic spontaneous urticaria and chronic inducible urticaria (symptomatic dermographism mostly) in combination with a few other non-skin conditions. I've been assessed by and am monitored for the urticaria by my derm, allergist, and GP, but my derm manages my medications.

Context: I have been on 300mg autopen of Dupixent since August 2025, every other week for CSU, as well as 40mg cetirizine daily. (I've tried to scale the cetirizine back, but I have breakthroughs when I go below 30mg. Before Dupixent we also tried montelukast but I did not tolerate it.) The dupixent + cetirizine went great until about April, and then I started having breakthroughs within 5 days of taking the shot, instead of 3 days before the next shot, which was the initial pattern. It got to the point that my derm gave me Dupixent samples to get it back under control, and she put me on an 8-week trial of once weekly Dupixent at 300mg instead of twice weekly. I just finished that trial, and while I'm still having some breakthroughs, it is not as bad.

Insurance coverage: I have a derm appointment coming up, and I think she will be moving toward trying to get my insurance to cover once weekly 300mg pens instead of every other week, even though I'm on dupixent for CSU which is FDA-approved for every other week. (I have EoE which is a once weekly prescription, but because I'm in histological remission now on a strict allergy diet and every other week Dupixent, my GI cannot prescribe it once weekly.)

Question: Doctors, have you had any luck with prescribing things off-label for refractory skin conditions? Or am I likely to spiral into a situation where I don't have any Dupixent at all while they process the request? I'm just trying to psychologically prepare myself for a return to full-body hives over the next few weeks, if that's the case.

Thanks for any insight you can provide.

Example photos over past month:

June 3, three weeks into 8-week once weekly dupilumab trial.

June 11, four weeks into 8-week once weekly dupilumab trial.

July 2, eight weeks into 8-week once weekly dupilumab trial.

July 2, eight weeks into 8-week once weekly dupilumab trial.

[This post is about ANY off-label prescription as I'm eager for any and all information, even though I'm specifically on an off-label dosage for Dupixent.]

Hi there! I've had hives (spontaneous and dermographism) on and off since I was 13, with a years-long flare in my 20s and daily hives starting again in 2023. (I'm now 35, though I wasn't formally diagnosed with chronic urticaria until last year as community doctors had just told me to take 10mg zyrtec and wait; and a previous allergist ascribed them to allergies based on a skin test, but I had actually just developed hives during the skin test from...being touched during the skin test. Anyway.) I have 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 (40mg cetirizine, which I'm still on) and briefly montelukast (that one did not go well). Though I also have an EoE diagnosis where the dupilumab dosage is usually once weekly, I take it every other week because it is prescribed and managed by my derm for urticaria.

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 a medication prescribed more frequently than recommended for their condition, or off-label use generally? Regarding insurance? And copay support programs? 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? I am in the USA.

^(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!

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? I'm in the USA.

^(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!