Dupilumab and Swelling: What Users Say

• Nic...
• February 21, 2020

Dupilumab for Eczema "I was one of the first to be put on Dupixent when it was approved - back in June of 2018. It worked very well for quite a while. I had severe eczema on the back of my neck, elbows, back of knees, and around my eyes. It cleared up pretty quickly after using Dupixent for a couple of months. Now, however, for about the last 2 months, I have experienced the side effect on my eyes. My eyelids are constantly red, inflamed, and itchy. My eyes are constantly tearing. My dermatologist gave me a prescription eye drop to take - it has not worked. He said he does not think it is a side effect of Dupixent, that he believes it is simply an eczema flare-up, possibly due to the weather in New Jersey. The Dupixent people disagree - they think it is a side effect of Dupixent. So my dilemma is - do I stay on Dupixent and continue the eye problems or go off Dupixent. To be perfectly honest - the last month or so, it seems the Dupixent has not been working as well."

• Mic...
• January 22, 2019

Dupilumab for Atopic Dermatitis "Took the loading dose of 600 mg, and my eyes got red, itchy, and puffy. Advised my dermatologist, and he gave me a Rx for an eyedrop called Bepahamide. This is a combination of steroid (prednisolone) and antibiotic in one eye drop. Both eyes, twice a day for 10 days. Eyes got a little better. Took the second dose (300 mg). Eyes got worse. Went back to the dermatologist, and he gave a second course of the same eye drop with no improvement. Went to my ophthalmologist. He did a complete eye exam. The ophthalmologist had to look up Dupixent when I told him it was one of the side effects of this medication. He suggested an antihistamine OTC eye drop called Zantidor. Been using Zantidor, and still, my eyes have not cleared. Saw noticeable improvement in my skin after the first 2 doses, but unfortunately, stopped using Dupixent due to severe eye irritation. Now what? My eyes aren't getting better, and the dermatologist has gone back to topical corticosteroid. Can someone please tell me what to do about my eyes?"

• Mar...
• Taken for 1 to 6 months
• July 28, 2018

Dupilumab for Eczema "My first few doses were helping a lot, taking the itch away and clearing my skin. My 4th dose made my eyes very red, my dermatologist referred me to an ophthalmologist to check the pressure in my eyes. Pressure was okay, only some inflammation in the whites of my eyes. So I continued the Dupixent injections, red eyes and all, then I started getting small, red, pimple-like spots on my face along with redness. When my joints started aching after the 6th dose, I stopped Dupixent. It has been approximately 2 months, and the redness on my face is finally going away, my eyes cleared right after stopping Dupixent. I seem to think the dose was too strong for me. But there’s only 1 strength. I’m still itching and having breakouts and don’t know what to do at this point as nothing seems to work."

• Too...
• Taken for 1 to 6 months
• July 29, 2017

Dupilumab for Atopic Dermatitis "Started on Dupixent six weeks ago. Skin cleared up, itching was reduced 85%, big relief, but within two weeks after my first dose, my eyes started to bother me. Itching, swelling, redness, dry eye, conjunctivitis. Way too many adverse side effects. Med does good, but has alarming bad side effects to the eyes. Went to Dr., told me to stop taking shots."

• A_C...
• Taken for 1 to 6 months
• April 20, 2023

Dupilumab for Prurigo Nodularis "I was diagnosed with prurigo nodularis recently, and after my doctor tried all options and nothing worked, he had me try Dupixent. I was hopeful and have been on the shots for 3 months. I have seen some improvement with it clearing, or it tends to clear quicker than before, but after each injection, I started noticing different things such as my nose would bleed, which has never happened, which led to serious inflammation and scabs inside my nose, continuously stuffy as if I have a cold. I was tired shortly after my injection, and the following day, I've had constant headaches, itchy, scratchy eyes. I developed a rash on the behind that was extremely painful and odd, and I've had a lot of muscle aches and generally don't feel good at all. Dupixent is not for me, and I have stopped treatment."

• Anonymous
• Taken for 1 to 6 months
• July 17, 2017

Dupilumab for Atopic Dermatitis "I'm 18 years old, and I have had eczema since I was a baby. I've been on many medications, and when I heard about Dupixent, I had really high hopes for it. I have been on this medicine for 4 months now, and my dermatitis has gotten worse. My face and neck are constantly burning, and my eyes are swollen and red. I haven't had a good experience with this medication, but it was worth a try."

• Red...
• Taken for less than 1 month
• May 8, 2021

Dupilumab for Asthma, Maintenance "I had my first 2 injections for my asthma. I really needed it to work, I need to get off inhaled steroids. I've been on the strongest dose of Advair, 4 puffs a day for 19 1/2 years. I started having reactions in my eyes the next day. It’s been weeks and not at all better. Red, sore, lump, burning. I’m now on steroid eye drops. Now applied for Nucala. Hope that works!!!!"

• Joa...
• Taken for 1 to 6 months
• April 9, 2018

Dupilumab for Eczema "Another disappointment as I was told today to go off this medicine. Definitely saw great things happening to my skin until my eyes went crazy, crusting, tearing, swelling, and flaking. I pray they can correct this side effect of the medicine."

• mur...
• October 18, 2018

Dupilumab for Atopic Dermatitis "Absolutely, helped me, the drug has improved my life! The problem is with my eyes, weeping, red, inflamed, itchy, etc. Actually, becoming unbearable. (I have been on Dupixent since March 15th, 2018) deciding what to do. (Actually, the Swiss health care may not pay anymore)... interesting, wow people so underestimate this disease... just so, so underestimated how horrible it is for families, etc."

• c-k...
• Taken for less than 1 month
• May 4, 2023

Dupilumab for Eczema "One week after the starter dose, I lost all my energy, and all my muscles and joints completely shut down. I had cold sweats and could not swallow or eat. The injection sites are a 4 to 5-inch circle of inflammation. It was absolutely one of the worst experiences of my life, and I thought I was going to die."

• Ang...
• July 13, 2021

Dupilumab for Atopic Dermatitis "The worst medicine ever! Do not take. I now have dry eyes and severe joint pain. Stiffness and swelling of the hands. The most at night. The pain is now throughout my body. I am young and active, and this medicine has slowed me down."

• caf...
• October 5, 2017

Dupilumab for Eczema "I have been suffering from eczema for close to 6 years now, and I am now 52 years old. Most of my problems have been on my right hand, but it gets so severe my hand can't function. After my 4-week injection, I started to see flare-ups in new places: legs and around my waist, as well as serious inflammation on my upper chest and back of my neck (all new to me), and believe me, I did start to panic. Actually, my hand looked better than the other places, so I was happy and sad. I know someone else here posted the same experience. Anyway, had a 6-week injection yesterday, and now I am seeing results everywhere. I was losing hope, but I am now seeing light at the end of the tunnel. I will definitely provide updates a month later."

• Sic...
• Taken for 1 to 2 years
• July 19, 2022

Dupilumab for Asthma, Maintenance "I started Dupixent in 2020 and thought everything was good until April of 2022. April 11, 2022, I called for my refill. I finally got it refilled, and it became the worst day of my life. Since then, I haven't gotten any refills because Dupixent refuses to pay Ingenio. I've gotten several $3349 bills, phone calls, emails, and texts. I've called all parties involved asking for management, NOTHING. Dupixent is telling me one thing while telling Ingenio something else. When I called Dupixent for the refill on 4/11, the rep from Ingenio said she wanted us on a recorded line so they would be liable in case something went wrong. I've asked for that recording and, of course, I have yet to get it. Dupixent and Ingenio are both horrible companies that don't help. I would not recommend this product for anyone. It put spots on my legs. My knees became so weak they would swell, and I couldn't walk. Don't use it for your safety."

• Ash...
• Taken for 1 to 6 months
• June 4, 2023

Dupilumab for Eosinophilic Esophagitis "I use the pen, and it is definitely a bit spicy. I take it on Sunday mornings and have found if I take it out of the fridge the night before, it helps a lot. It’s towards the end of the injection that I have to wince a bit. It’s just a sharp kind of pain, but it’s not unbearable. Once it’s done injecting, the pain pretty much stops immediately. That being said, the area is swollen for a bit, sometimes I get a big red welt that looks like an allergic reaction, but it’s not. Just an injection site reaction that seems to be normal with this medication. It’s gone by the next day. The injection site does not like band-aids. I’ll put one on for a bit just to catch any minor seepage or blood from the injection, but I’ll take it off after 15 minutes, otherwise, the redness and swelling are 10 times worse. All that to say, it’s done wonders for me. With the first dose, my eczema cleared up, and I haven’t had any more “allergic reactions” or issues eating really anything."

• Mis...
• Taken for 1 to 6 months
• April 25, 2022

Dupilumab for Atopic Dermatitis "Started Dupixent a few weeks ago. From the start, it seemed to keep the hives away. So hopeful to finally find something that worked! Not difficult to administer the injection at all. However, after just having my fifth injection, I find the side effects are intolerable. Weight gain, swelling in fingers, legs, and ankles. Rash on face started yesterday. But the very worst part is the eye problem. I hate to research illnesses and symptoms, but it has been so helpful to come here and understand that others are experiencing the same issues. At first, I wondered if I might be losing my mind - my eyes are so irritated and the other miseries... I really, really hope this drug does help folks. I think it's just a matter of who is susceptible to the side effects."

• M G...
• April 19, 2023

Dupilumab for Chronic Rhinosinusitis With Nasal Polyps "I took Dupixent for about 6 months, once every 2 weeks, at 300 mg per shot. It reduced my nasal polyps and helped me avoid another sinus surgery. It also helped with my asthma. However, after about 6 months off the meds, my asthma has returned, and I feel like my polyps are growing back, though I haven't had them checked out yet. I figure I'll do another 6 months on the meds again within a year or so from now to manage my polyps. Side effects were site injection pain/sensitivity and a little swelling. It was enough of a bother to encourage me to stop taking it once it had the desired effect, and I wish there were a better way to administer it."

• Jan...
• May 6, 2023

Dupilumab for Eczema "Redness, swelling, itching at the site. Can spread up to 10 in diameter. Upset stomach a couple of days after injection. I’ve been on Dupixent since 12/22. Otherwise, when it comes to the eczema, my skin has really been good."

• Ste...
• October 5, 2022

For Eczema "I've had eczema my whole life, which got particularly bad in the last 5 years (25 - 30 years old). It got unbearable after I gave birth, so I went on Dupixent. I was told it was a risk while I was breastfeeding, but I consented to it anyway. My son has been perfectly fine, he's now one and a half, and I've breastfed the entire time. My eczema cleared up perfectly, it was a miracle drug for about a year. My eyes were red, itchy, and weepy the whole time, but it was better than what the eczema did, so I was happy. However, after 10 months, I could barely open my eyes, they were so swollen, itchy, and sore. I saw an optometrist who thought I might have keratitis, false alarm, but that scared me into stopping. It's been a month since I last took it, and my eczema is starting to come back, and my eyes are still pretty red and weepy, although much improved. I'd still do it all again. I may even continue taking it, honestly, my eczema is completely gone while using. No other side effects."