My Doctor Told Me To Google This
August 17, 2023 8:29 AM Subscribe
Two years ago I started allergy shots after a diagnosis of eczema on top of the allergies I already knew I had. I'm now in what the allergist's office calls the "maintenance phase" of my shots, and while my other allergy symptoms have improved my eczema mostly hasn't. After my last followup they mentioned that Dupixent could be an option for me, and said, and I quote, "so go home and look it up." What do I need to know?
This question was me. To recap: I have had (known) environmental allergies for years. In 2021 after the onset of new symptoms (rashes, hives, extreme itching) I saw a series of doctors and got a diagnosis of eczema. As I noted in that previous question, my allergist said that there was about a 75% chance that a course of immunotherapy (allergy shots) would reduce or eliminate my eczema, leaving a 25% chance that the primary trigger wasn't those known allergens. I opted for the shots two years ago.
Now, two years in, my old (pre-eczema) symptoms are indeed much better, but I still get bad eczema flares. I have a couple topical treatments I'm supposed to be able to use only for a few weeks at a time and then stop using without my symptoms returning, but I've found that I inevitably have a flare within a week of discontinuing them. At my last follow-up appointment the NP asked if I noticed an improvement in my symptoms. I told her basically what this paragraph says, and she then asked me a bunch of very specific follow-up questions (what do I use, how often do I use it, what happens if I don't take it, how bad are the symptoms, how's my quality of life, do I use hypoallergenic, dye- and fragrance-free products, etc). After all that she said I might be a good candidate for Dupixent and that all the questions were basically the screening that they have to do before they can petition my insurance for approval to prescribe it (and my answers were all the right answers for approval). But then she said the most ominous thing: "Here's an information sheet. Go home and look it up!"
I've Googled and I didn't get the impression it's terrible. I saw that <10% of patients end up with conjunctivitis or other similar eye symptoms, but that for most of them the problem does go away. I didn't find anything else that seemed hugely problematic, and I feel like I'm missing something. Dupixent is a "biologic" and it sure seems like any time anybody mentions drugs in that category the dramatic music sting from a soap opera plays, but at this point I don't know that the common risks concern me too much. (Assume I have an army of doctors who don't seem to contradict each other and that I see everybody on schedule). Are there questions I need to be asking? Is there some horrible side effect I managed to overlook?
This question was me. To recap: I have had (known) environmental allergies for years. In 2021 after the onset of new symptoms (rashes, hives, extreme itching) I saw a series of doctors and got a diagnosis of eczema. As I noted in that previous question, my allergist said that there was about a 75% chance that a course of immunotherapy (allergy shots) would reduce or eliminate my eczema, leaving a 25% chance that the primary trigger wasn't those known allergens. I opted for the shots two years ago.
Now, two years in, my old (pre-eczema) symptoms are indeed much better, but I still get bad eczema flares. I have a couple topical treatments I'm supposed to be able to use only for a few weeks at a time and then stop using without my symptoms returning, but I've found that I inevitably have a flare within a week of discontinuing them. At my last follow-up appointment the NP asked if I noticed an improvement in my symptoms. I told her basically what this paragraph says, and she then asked me a bunch of very specific follow-up questions (what do I use, how often do I use it, what happens if I don't take it, how bad are the symptoms, how's my quality of life, do I use hypoallergenic, dye- and fragrance-free products, etc). After all that she said I might be a good candidate for Dupixent and that all the questions were basically the screening that they have to do before they can petition my insurance for approval to prescribe it (and my answers were all the right answers for approval). But then she said the most ominous thing: "Here's an information sheet. Go home and look it up!"
I've Googled and I didn't get the impression it's terrible. I saw that <10% of patients end up with conjunctivitis or other similar eye symptoms, but that for most of them the problem does go away. I didn't find anything else that seemed hugely problematic, and I feel like I'm missing something. Dupixent is a "biologic" and it sure seems like any time anybody mentions drugs in that category the dramatic music sting from a soap opera plays, but at this point I don't know that the common risks concern me too much. (Assume I have an army of doctors who don't seem to contradict each other and that I see everybody on schedule). Are there questions I need to be asking? Is there some horrible side effect I managed to overlook?
I don't have an answer to your main question, but the best advice I had regarding topical corticosteroids is to continue applying them for a week or two after the flare-up has completely gone. It's made a considerable difference to my eczema flare-ups.
posted by pipeski at 8:44 AM on August 17, 2023
posted by pipeski at 8:44 AM on August 17, 2023
Dupixent is crazy expensive. Like $20-40k a year, so convincing your insurance to cover it may be a challenge.
My dermatologist prescribed me Dupixent and gave me some free samples. It helped without major side effects. But based on my understanding, he then had to fight the insurance company's doctor in hand to hand combat for approval, which he lost, so I'm not on it anymore.
posted by justkevin at 9:14 AM on August 17, 2023 [1 favorite]
My dermatologist prescribed me Dupixent and gave me some free samples. It helped without major side effects. But based on my understanding, he then had to fight the insurance company's doctor in hand to hand combat for approval, which he lost, so I'm not on it anymore.
posted by justkevin at 9:14 AM on August 17, 2023 [1 favorite]
Response by poster: continue applying them for a week or two after the flare-up has completely gone
Difficulty level: I'm not supposed to use topical steroids (which are only a part of my regimen) for longer than two weeks at a stretch. It is thus not possible for me to use steroids for a full two weeks after I've already used them for however long it takes to knock a flare down. They've said I can use the other two topical treatments (Protopic/tacrolimus and Eucrisa/crisaborole) pretty much without limit, but they've also said I should be able to stop using them after two weeks and not have another flare so quickly. At the most recent visit the NP said she wanted me to try using Eucrisa by itself with steroids only as needed, as many patients seem to do just as well that way as they do with Protopic and Eucrisa. It's still really frustrating to have apply stuff every day, even if I'm down to only one medication plus a moisturizer. I was supposed to be able to get to the point I didn't have to use any medication on a daily basis, and it just hasn't happened.
posted by fedward at 9:49 AM on August 17, 2023
Difficulty level: I'm not supposed to use topical steroids (which are only a part of my regimen) for longer than two weeks at a stretch. It is thus not possible for me to use steroids for a full two weeks after I've already used them for however long it takes to knock a flare down. They've said I can use the other two topical treatments (Protopic/tacrolimus and Eucrisa/crisaborole) pretty much without limit, but they've also said I should be able to stop using them after two weeks and not have another flare so quickly. At the most recent visit the NP said she wanted me to try using Eucrisa by itself with steroids only as needed, as many patients seem to do just as well that way as they do with Protopic and Eucrisa. It's still really frustrating to have apply stuff every day, even if I'm down to only one medication plus a moisturizer. I was supposed to be able to get to the point I didn't have to use any medication on a daily basis, and it just hasn't happened.
posted by fedward at 9:49 AM on August 17, 2023
Best answer: My partner has been on Dupixent for a few years and it made a major difference for him. After 3-4 years, he started flaring a bit more, but it's still much better than his eczema was on all previously attempted treatments, of which there were many. He is still religious about moisturizer, has a couple of topicals that he uses when he flares, and is on an oral antihistamine.
He does occasionally get conjunctivitis as a side effect, but it comes and goes and it seems to just be pinkish/reddish eye, not the other parts of it when it's viral/bacterial (no discharge, crustiness, etc.). He doesn't do anything to treat it.
The main downsides seem to be that there's always some drama with insurance/mail order pharmacy that he needs to resolve and that traveling can be tricky because someone needs to be able to receive the monthly mail order packages and it's administered every 2 weeks and needs to be kept refrigerated. This sometimes interacts with insurance drama where it can require multiple phone calls to get an early shipment so that we have doses ahead of any travel. I think he has found it helpful to have a kind of fancy dermatologist who is particularly good at navigating the insurance bureaucracy and can usually provide samples when things go sideways.
As someone with a different skin issue that requires ongoing management... yes it sucks to have to apply something every day, but there's all sorts of stuff that I already do every day (brush my teeth, apply sunscreen, take a shower, etc.) and I accept that this is one more thing that just goes on the list. Personally I've found that the topicals are least annoying and most effective if I put them on after I take a shower, moisturize over them with a thick barrier cream, and then put on pajama-like clothing that covers the area I've treated because it keeps it from accidentally transferring to things and keeps me from rubbing it off if I'm itchy. Your mileage may vary based on the nature of your topicals and the locations you're treating.
posted by A Blue Moon at 10:10 AM on August 17, 2023 [1 favorite]
He does occasionally get conjunctivitis as a side effect, but it comes and goes and it seems to just be pinkish/reddish eye, not the other parts of it when it's viral/bacterial (no discharge, crustiness, etc.). He doesn't do anything to treat it.
The main downsides seem to be that there's always some drama with insurance/mail order pharmacy that he needs to resolve and that traveling can be tricky because someone needs to be able to receive the monthly mail order packages and it's administered every 2 weeks and needs to be kept refrigerated. This sometimes interacts with insurance drama where it can require multiple phone calls to get an early shipment so that we have doses ahead of any travel. I think he has found it helpful to have a kind of fancy dermatologist who is particularly good at navigating the insurance bureaucracy and can usually provide samples when things go sideways.
As someone with a different skin issue that requires ongoing management... yes it sucks to have to apply something every day, but there's all sorts of stuff that I already do every day (brush my teeth, apply sunscreen, take a shower, etc.) and I accept that this is one more thing that just goes on the list. Personally I've found that the topicals are least annoying and most effective if I put them on after I take a shower, moisturize over them with a thick barrier cream, and then put on pajama-like clothing that covers the area I've treated because it keeps it from accidentally transferring to things and keeps me from rubbing it off if I'm itchy. Your mileage may vary based on the nature of your topicals and the locations you're treating.
posted by A Blue Moon at 10:10 AM on August 17, 2023 [1 favorite]
Best answer: I've been on dupixent for a few years now. As far as I'm concerned, it's a miracle drug. I had really bad eczema + hives, as well as a bunch of other allergic/mast cell-mediated symptoms, and dupxient essentially cleared it all up for me.
I've had two different insurance plans agree to cover it just fine, and the company offers a copay waiver if you qualify, so I get the drug for free.
Main side effect for me was the dry eyes, which was very alarming when it started happening as I didn't understand it. My eye doctor said if you've taken accutane in the past, then you're at higher risk of having dry eyes from dupixent. But a simple 10 minute warm compress 3x/week + taking fish oil supplements cleared that up for me, and I don't really have any issues with dryness anymore. I do keep some preservative-free eyedrops around just in case, though.
Another weird possible side effect that I asked my docs about and didn't really see online was that I grew moderately more body hair after taking it? But I never had much to begin with, so I'm still far below average for hairiness. Some areas were annoying (nose hair), but then also my eyebrows are a lot more full now? So it kinda evens out for me, and my providers didn't seem concerned about it.
Lastly, I do hope to wean off of it eventually. It's a fairly new drug, so longterm effects really aren't known (although i was nonfunctional before taking it, so it'd have to be a pretty bad longterm effect for me to stop taking it immediately). My plan was to get on allergy shots and then wean off dupixent, but you've already completed allergy shots so I'm not sure what the longterm plan there would be. I still have to moisturize religiously, use all hypoallergenic products/fabrics, and use hydrocortisone as needed during flares, and I expect to always have to manage eczema like this.
posted by bongerino at 11:16 AM on August 17, 2023 [2 favorites]
I've had two different insurance plans agree to cover it just fine, and the company offers a copay waiver if you qualify, so I get the drug for free.
Main side effect for me was the dry eyes, which was very alarming when it started happening as I didn't understand it. My eye doctor said if you've taken accutane in the past, then you're at higher risk of having dry eyes from dupixent. But a simple 10 minute warm compress 3x/week + taking fish oil supplements cleared that up for me, and I don't really have any issues with dryness anymore. I do keep some preservative-free eyedrops around just in case, though.
Another weird possible side effect that I asked my docs about and didn't really see online was that I grew moderately more body hair after taking it? But I never had much to begin with, so I'm still far below average for hairiness. Some areas were annoying (nose hair), but then also my eyebrows are a lot more full now? So it kinda evens out for me, and my providers didn't seem concerned about it.
Lastly, I do hope to wean off of it eventually. It's a fairly new drug, so longterm effects really aren't known (although i was nonfunctional before taking it, so it'd have to be a pretty bad longterm effect for me to stop taking it immediately). My plan was to get on allergy shots and then wean off dupixent, but you've already completed allergy shots so I'm not sure what the longterm plan there would be. I still have to moisturize religiously, use all hypoallergenic products/fabrics, and use hydrocortisone as needed during flares, and I expect to always have to manage eczema like this.
posted by bongerino at 11:16 AM on August 17, 2023 [2 favorites]
Response by poster: I think he has found it helpful to have a kind of fancy dermatologist who is particularly good at navigating the insurance bureaucracy and can usually provide samples when things go sideways.
Lucky for me, my allergist's office has treated multiple sitting U.S. Presidents, consults for every professional sports team, and has a constant roster of a Who's Who of important people in DC (not to mention all the people who are convinced they're important and don't take no for an answer) so I have faith that they'll be able to navigate my insurance just fine. There is no fancier allergist in DC.
(Any DC locals who've had a referral to an allergist are now saying, "oh, you go to Dr. Nsouli too." I've bonded with friends over this.)
posted by fedward at 12:24 PM on August 17, 2023 [1 favorite]
Lucky for me, my allergist's office has treated multiple sitting U.S. Presidents, consults for every professional sports team, and has a constant roster of a Who's Who of important people in DC (not to mention all the people who are convinced they're important and don't take no for an answer) so I have faith that they'll be able to navigate my insurance just fine. There is no fancier allergist in DC.
(Any DC locals who've had a referral to an allergist are now saying, "oh, you go to Dr. Nsouli too." I've bonded with friends over this.)
posted by fedward at 12:24 PM on August 17, 2023 [1 favorite]
Response by poster: My primary care doctor's office made me come in for a prescription refill and since I had the doctor in front of me I asked him about it. He seemed to be of at least two minds about it. He said he's worried about suppressing any part of the immune system, but he also said his mom takes it and loves the improvement it's made for her. He concluded by saying that if my other doctors recommend it, and my symptoms aren't otherwise resolved, I should do it.
My allergist has already submitted the documentation to my insurance company and received approval so that part's taken care of, at least. I still don't know what my out of pocket cost is going to be.
posted by fedward at 1:24 PM on September 1, 2023
My allergist has already submitted the documentation to my insurance company and received approval so that part's taken care of, at least. I still don't know what my out of pocket cost is going to be.
posted by fedward at 1:24 PM on September 1, 2023
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1. I've now had three rounds of skin testing (one years ago, one in 2021, and one early this year to see how well the course of immunotherapy had been working). At this most recent appointment the NP looked at my records and said I'd started out "super-duper allergic" (reactions beyond their testing charts) and that for the one thing I was most allergic to, I was now just "very allergic." She said that they were going to keep me in maintenance phase for a while longer and test me again at some point, because maintenance phase was the most "bang for the buck" and my sensitivity should keep going down.
2. The eczema flares usually respond more quickly to topical medications now than they did two years ago, but the fact I still need multiple topical medications and get flares so quickly if I stop is a factor in the recommendation for Dupixent.
3. I was a camp counselor in college and had conjunctivitis at least once a summer. If that's the worst side effect I have to deal with, I'm 100% OK with it because I know how to manage it until it goes away.
posted by fedward at 8:39 AM on August 17, 2023