Dupixent (Dupilumab) & More: Medications for Eczema

I have tried all of the typical prescription medications for eczema, except for JAK inhibitors. This is my next step if my continued explorations don’t resolve my eczema. Through working with several doctors (PCP, dermatologist, allergist, primarily), I’ve tried the following medications, as far as I can recall. These include Eucrisa, numerous topical steroids, Tacrolimus/Protopic, Cyclosporine, Dupixent (dupilumab), Elidel, and Prednisone. I’ve also tried over the counter topical steroids.

Eucrisa

I found Eucrisa burned certain areas, particularly my eyelids. I’m not sure if this is because the skin on the eyes is thinner. Or maybe, this was just where my eczema was most severe at the time I was prescribed it. I also tried it on my hands. Overall, Eucrisa didn’t work. The positive effects didn’t seem to be as extensive as with topical steroids. The price was also higher with my insurance than was the price for steroids.

Triamcinolone acetonide cream & Betamethasone valerate (Topical Steroids)

I’ve tried just about all of the super strong topical steroids. I used these extensively (for effectively a month straight with permission from my dermatologist) before my wedding to achieve semi-clear skin. Oh, what a glorious month it was!! Man is life good on (topical) steroids. I fully felt like myself again while using these. My skin was so soft. I didn’t shed skin everywhere. Back then, I could move my limbs freely without my skin cracking. I went for runs, did yoga, and I sweat without aggressively itching and scratching.

Why stop the steroids??

This doesn’t last. Not all the time, but sometimes, after just a few applications, and always, once I stop, my skin comes back bumpy. The bumps break open, and I’m covered in puss. And/or, I get a deep, deep itching sensation that feels like it’s down to the bone everywhere I’ve applied steroid. This is particularly bad on my arms. This is a super deep itch which makes little sense because visually my skin is clear. Because this happens most often on my arms, I still occasionally use my topical steroid prescription to treat particularly angry or stubborn patches on hands, occasionally face, and behind my knees.

My allergist thinks I’ve developed an allergy to steroids. Switching the type seems to help with that deep itching a bit. However, note even if I’m “treating a stubborn patch” with steroids, my skin has never been fully clear since my severe eczema started. Steroids just help me, for example, bend my elbows without cracking the skin there so I can unload the dishwasher and if I’m lucky, do yoga. For this basic daily life help, I am forever grateful to topical steroids. I just wish one could use them more often. I wish they didn’t (occasionally) make me want to itch like 10 layers deeper than should be normal. It’s truly the worst itch.

Prednisone

The only time I actually have had some respite was after taking prednisone. I had a tiny patch on my hands at the time and patches on my eyes and a very aggressive doctor. I took Prednisone in May and was clear until October (wowza!). The only problem is, Prednisone can mess with your bones and it really messed with my sleep. I was wired the entire time I was taking it. No doctor has felt comfortable prescribing it to me since given its side effects; it’s just not worth it in their eyes, and frankly I’m OK skipping taking it again too.

I should add, after this brief respite, when the small patch on my hand came back (more on my eczema spread story here), I wish I’d just gone back to my doctor right away and done another course of strong topical steroids. Who’s to say whether that would have worked since nowadays the steroids just seem to make my eczema more angry overall? I do sometimes wish I’d just done more of the “heavy duty” treatments earlier when my eczema was still manageable (and not impacting my sleep, my relationship, my work, and effectively my entire life) … back when my skin wasn’t completely damaged, and I hadn’t developed all of the bad habits I’ve since developed on account of my severe eczema.

Tacrolimus/Protopic, Cyclosporine, and Elidel/Pimecrolimus

Following steroids, my insurance required me to try essentially all of the other available medications before they would approve me starting Dupixent (dupilumab). As far as I recall, this list included Tacrolimus/Protopic, Cyclosporine, and Elidel/Pimecrolimus for me (it may be different for you depending on your insurance). I did not take methotrexate because I was going through this list during the COVID-19 pandemic. My doctor didn’t want me trying cyclosporine, an immunosuppressant, either, during this time, but we ended up trying it as a sort of last resort.

All of these medications were extremely mediocre for me. Cyclosporine has many side effects and frankly I was uncomfortable while taking it. It also didn’t do anything for me. One of my worst days with eczema was while I was taking Cyclosporine. It was over the holidays, and I was home visiting friends and family. I was so excited one day because I was finally getting to meet a friend’s new boyfriend, who she was absolutely smitten with, the next day. Unfortunately, that day I woke up and my inner elbow was so cracked and dry and sore that I could not bend it enough to feel I could safely drive (crazy I know). I talked to my doctor and quickly stopped Cyclosporine thereafter; it clearly was not helping!

Dupixent (dupilumab)

This failed march across so many medications finally led me to Dupixent (dupilumab) or what the internet likes to call “eczema injections”, which is pretty funny.

I should note, I was extremely wary of Dupixent (dupilumab). Having to give yourself an injection just makes you feel like you’re unwell and sick. I was also wary because at the time, the medication was new, and I seem to always get side effects from medications (read: not sleeping on Prednisone, deep itching from topical steroids, etc.). I knew I would be trying for children soon and the data on pregnant women was lacking if existent at all. But, finally, after much research, I decided to give it a shot.

Do I wish I had started Dupixent (dupilumab) sooner? No.

I was so hopeful at the time that one of the “milder” treatments would work for me. Though, talk to your doctor, but Cyclosporine is frankly anything but mild. It’s crazy that insurance requires trying it before something far more targeted, like Dupixent (dupilumab).

Dupixent (dupilumab) was my “last hope” at this point in my eczema journey, and it felt good to keep it on the shelf as a last resort while I failed and failed other treatments. My cyclosporine, Elidel, etc. days were some dark days.

I know I sound like a commercial saying this, but I saw starting Dupixent (dupilumab) as a sort of potential Renaissance/new life.

There was a whole insurance rigmarole with a specialty pharmacy to actually get me the medication. I was also lucky in that about a month or two after I started it, I got to backpack around Europe. Backpacking around Europe = amazing! Backpacking around Europe in the summer while trying to keep a small cooler of injectable medication refrigerated or room temperature at minimum at all times = very challenging.

Despite my slow and rough start to using Dupixent (dupilumab), we eventually began to get along.

How did Dupixent work for me?

There was a period between roughly July and October that year when I had minimal symptoms, could move my body freely without pain (read: skin cracking), and only had to use lotion once a day. What a time!! Unfortunately, once cold weather hit in November or so, I was back on the bad skin track. Eventually my skin returned to how it was before I started the medication.

Who knows why this is. My personal hypothesis is that my skin was just better that summer because I was backpacking in Europe. My skin saw the sun way more often than it does when I’m working my desk job. It could also be that that summer was relatively stress-free. Once the Fall came around, I was greeted with a cross-country move, buying a home (and moving into said home), and planning a wedding. All exciting things, but likely not great for my skin. I just wish Dupixent (dupilumab) could have helped me get through that period a little more gracefully.

Dupixent (dupilumab) works great for some people. Not as an eczema cure, but as a maintenance treatment.  So, while I’m not taking it anymore, I figured it wouldn’t hurt for me to share my tips for taking Dupixent (dupilumab) here.

Note: my insurance required me to use the syringe, not the auto injector. So, some of the below pertains to my experience with the Dupixent syringe, specifically.

Dupixent (dupilumab) Usage Tips: From a Patient’s Perspective

• Dupixent (dupilumab) has to sit on the counter for 45 minutes before you can inject it. This requires some advance planning if you have a packed day. I set a lot of alarms called “Dupixent” while I was taking the medication.
• I get paid every other week. I decided to take the injections on the weeks I didn’t get paid (because I’m a masochist?) so I would remember when to take them. I also kept a calendar, of course. But, sometimes you just forget to mark off whether you actually took the medication or not. I did have a note in my phone which indicated where I took the last injection. This was helpful as you aren’t supposed to inject into the same spot more than once. This was effectively my calendar.
• I ended up liking using my leg as the injection site rather than my stomach. Pinching your own stomach fat and putting a needle in it was just a bit weird to me.
• It’s not like you’re injecting Dupixent (dupilumab) every day. I found myself having to read the instructions every time for the first few months to make sure I was doing it right. I finally got comfortable enough after month 4 or so (so injection #8 or so).
• I won’t lie, Dupixent (dupilumab) hurts going in. The liquid is pretty viscous so the shot can take a while. Or, maybe I’m just not at skilled at giving injections as an actual nurse; I can’t see how I could have injected it any faster, though. The liquid never burned or anything, it was more the pain of having a needle in your muscle for an extended period of time. If you’ve ever had allergy shots at high doses, I’d say Dupixent (dupilumab) is more comfortable than those. You’re just giving yourself the injection, so you can’t really look away and try to ignore the fact that there’s a needle in your body. More power to you if you have someone in your household who’s comfortable giving you your injection, though!
• Because it hurt, I would repeat a little mantra to myself while the medication was injected: “This is helping me. This is helping me. This is helping me.” And of course, I would take deep breaths. This did seem to help a bit.

Major Disclaimers

Note – AGAIN, these are solely my experiences, and I’m writing about them in some cases years after I experienced them. Obviously listen to your doctor, and ask them good questions about your various options.

One more time – I’m not a doctor. You may have a wildly different experience with these medications. Talk to your doctor. Talk to your doctor. And finally, talk to your doctor.

AGAIN, PLEASE NOTE: As with all of my posts, this is not medical advice. I am not a doctor. All of the below is solely my own experience with each of these doctor-prescribed medications. These opinions and views are purely my own.