Dupilumab and Itching: What Users Say (Page 2)

• sur...
• Taken for 1 to 2 years
• June 18, 2019

For Atopic Dermatitis "I started Dupixent in August 2017 to replace the cyclosporine, and it helped cosmetically with my skin but does very little to stop the itch. My AD is severe, and after reading the trials, it was only about as effective as cyclosporine but without the side effects. I scratch throughout the day - not 24/7 but enough to suffer from sleep deprivation and the social stigma of scratching and having skin come off due to how vigorous I scratch. Sheets changed weekly with blood spots from the bleeding."

• Cal...
• August 23, 2017

For Eczema "I have now been using Dupixent for about a month. I've had eczema for my whole life (all 48 years). Treatments I've previously used were cortisone creams (Diprolene & Clobetasol), antihistamines, regular application of emollients, anti-itch creams, bleach baths. All just reduced flare-ups but nothing ever made my eczema truly better. It has always been present even when most allergens were not present (i.e., in the winter). Dupixent is supposed to take several months to work, but I noticed that my skin was clearing up 4 days after the initial loading dose. Since then, my skin has continued to show improvement with dramatically reduced redness and progressively less itchiness."

• Sha...
• March 5, 2019

For Eczema "I just developed eczema within the last 3 years and would literally cry because nothing would help. I have developed very low self-esteem and would not go anywhere. I started the injections about 2 months ago, and the rashes have subsided. I feel when I get into the week in between my injections, I start getting itchy and red. Steroid cream helps at this time. I feel this medicine would be better if it was weekly instead of biweekly. My eyeballs literally itch like crazy after the injections, but that goes away after a couple of days and subsides after a dose of Benadryl. I still get pretty dry skin, but nothing lotion does not help. I am not scratching myself until I literally scratch all the skin off, which I was doing previously! I will say that with this injection, I am feeling 80% better. I do not think I will ever be 100% again, but this is WAY better than a year ago!!"

• Dee...
• Taken for 6 months to 1 year
• September 6, 2018

For Atopic Dermatitis "I am 38 years old and have had eczema on and off most of my life. It started getting really excruciating about 3 years ago. Sores all over from scratching. Couldn't sleep. Couldn't sweat. Depressed because I didn't want to go out. The flare-ups got so bad that my patients would ask me if I was okay (I'm a nurse, so I have to work through the flare-ups, which were constant). I was put on high doses of oral steroids, antihistamines, even intravenous steroids, and nothing helped. This drug has changed my life. I've been on it 9 months, and my skin is 75 percent clearer. The itching is 90 percent better. I would not want to be without this medication. It is truly a blessing. I wish I could thank everyone who worked on getting this drug approved!"

• Pin...
• Taken for 1 to 6 months
• April 24, 2018

For Atopic Dermatitis "I have had AD for at least 67 years of my 70 years on this earth. My life as a child was hell because of weeping, medicated baths and teasing by other children. My adult life has also been equally affected by the use of corticosteroids on my skin, which is now permanently affected due to chronic steroids. When my new dermatologist brought up Dupixent about six months ago, I was skeptical and scared. I started March 22. I STOPPED itching in 24 hours. It has been a MIRACLE. Scratching is now due to habit but not itching. My skin has lost redness. I am glad about my success but sad when I read about my fellow ADs who continue to suffer despite Dupixent."

• Anonymous
• Taken for less than 1 month
• July 29, 2017

For Atopic Dermatitis "I am 20 years old, and when I say I have tried anything and everything to calm my skin down from having horrendous eczema flare-ups, I mean it. I have eczema head to toe and have had it my entire life (all year round). I have just taken my first dose after getting the booster (double) shot on Dupixent, and I am amazed with how my skin is! My face has cleared up, and my arms look amazing! I can sleep through the night now! Before this, I would wake up with my bed covered in dead skin I had scratched off, even if I took 3 Benadryl! I would still wake up at night from itching!!!!!"

• Anonymous
• Taken for 1 to 6 months
• November 29, 2018

For Eczema "Cleared up some eczema but caused more on my face and headaches for two straight days after I gave it to myself. The injection itself hurts really bad and burns. Gave me a yeast infection in my mouth, which apparently is a common side effect. My eyes are itchy, red, and dry! All in all, I hate it! And will never use it again."

• Dan...
• February 21, 2021

For Eczema "I received my 1st injection of Dupixent. I developed itchy eyelids. Three days later, I had a red rash on one of my arms. That went away. The eczema itch really hasn't changed any. In fact, the eczema looks worse, I am not that impressed with this drug. This is rather disappointing."

• Ano...
• Taken for 1 to 6 months
• November 5, 2022

For Chronic Rhinosinusitis With Nasal Polyps "I thought Dupixent was a miracle drug. It completely cleared up my sinus polyps and asthma, however, after the first two treatments, I developed an allergy at the injection site. Even the first two injections that worked were severely painful. I tried arms, thighs, and belly. In addition to pain, after the first two treatments, I developed a reaction on my skin at the injection site. At first, it was a small area, red and itchy. As I continued treatments, the red area increased from about 2 inches to about 4 or 5 inches in diameter in an amorphous shape with a dark red border around it. Eventually, that reaction came with bruising and severe muscle ache at the site. When I tried to inject in my belly, the pain was so bad that for a week, I couldn't bend over to even pick something up that I had dropped. Yes, it cleared up my polyps and asthma, returned my sense of smell, and my eosinophil count dropped. But my intolerance for Dupixent didn't outweigh the benefits. Everybody is different. Good luck..."

• Cha...
• August 26, 2018

For Atopic Dermatitis "I suffer from atopic dermatitis and was on Dupixent for 7 months with no change. It calmed down the itching some, and that's all. 4 months into taking the injections, my joints started to hurt and continued to get worse. The Dr. stopped the Dupixent, and my joints began to feel a little better. So I still suffer from AD with no medicine that helps. Glad for those that it does help."

• Kri...
• January 22, 2018

For Eczema "Super annoyed. Hives stopped. Rashes 90% clear two months in. I actually started to think I was going to get my life back. Then my eyes started being attacked - itching, burning red eye, puffy/swollen eyelids, swollen cornea. I’m miserable, and I have to stop. It’s really a terrible choice between eyes of fire and hives/rashes."

• Hol...
• Taken for 6 months to 1 year
• July 2, 2018

For Eczema "I have been on Dupixent since Oct 2017. It has changed my life! I am 58 and had eczema since I was six months old. The last two years before starting the injections, I was in a constant flare over my entire body. I have tried everything and went through tubs of medicine. My dermatologist kept saying something is finally coming! I am a nurse in a hospital and was nervous about infections. I have bone loss from the prednisone I took off and on, and the steroid creams. I also had serious infections related to my disease and allergy shots. I slept horribly. I am 95% clear. I can sleep and don’t worry about spending the night somewhere and getting blood on sheets. I exercise without being itchy from sweating. I am so thankful. It took six months and a lot of persistence to get my insurance to cover the medication. I have had peeling lips and red, itchy eyes, but they are getting better."

• CNs...
• July 28, 2021

For Eczema "My adult son had a reaction to Dupixent that has never gone away. He had eczema on his hands, feet, arms, and legs. He began taking Dupixent in high school, and, while all of his body eczema went away, he began getting it more and more on his face. At first, the doctor said it was a reaction to sunblock, but he continued to get eczema only on his face when not using sunblock at all. Then that doctor stopped practicing medicine. My son had never had any face eczema before Dupixent. NONE. It is obvious this was due to the Dupixent. He uses all non-toxic products for washing both body and clothing. His face got worse and worse. I have photos. Even though he has quit Dupixent for about a year, his face continues to break out in terrible, painful eczema. It flares up especially in the heat, and plain tap water can even irritate it. He has burning, itching, and red scaly blotches all around his forehead and eyes. It's not only uncomfortable, but it's also embarrassing."

• LBa...
• Taken for 1 to 6 months
• November 9, 2019

For Atopic Dermatitis "My daughter was born with eczema, tried lots of creams, and nothing has worked. As she grew, became a teen, it has got out of control. We heard about the shot and couldn’t wait for it to be approved for kids. She is 15. She noticed not itching within a few weeks, but had big patches on her face, and her neck is covered in redness and flaky. They wanted us to continue with shots, and we did from August to October. We had to stop them. Her neck and face have never been so broken out. Hate it didn’t work. Now on to cyclosporine."

• Anonymous
• Taken for 1 to 6 months
• August 28, 2017

For Eczema "I am a 30-year-old female who has had eczema my whole life, but it has gotten severely worse in the past 3 years. I have been on this medication for about 2 months now, and so far, it is doing well. I noticed results almost immediately and no longer cringe when I shower. But in the past 2 weeks, I've noticed a small flare-up on my face coming back, which I hope is only due to the change of season. The flare-up is very small compared to what I experienced in the past and not as itchy all the time (there is some itchiness at night) as my flare-ups have been in the past."

• War...
• Taken for 1 to 6 months
• January 9, 2022

For Eczema "DO NOT TAKE DUPIXENT! I was fine for the first few months. I then ended up with blepharitis (severely itchy eyelids), a terrible bright red patchy rash with white heads on my face that has only almost disappeared after six months, and then significant hair loss in two places in the back of my head. If you do an internet search for people with these symptoms. The photos are terrible and exactly what I experienced. Hope my hair grows back... If I could give this med a minus rating, I would."

• Baz...
• Taken for 1 to 6 months
• May 6, 2019

For Eczema "I have a lot of pressure in my legs, and they are very painful. The skin is very dry and scaly. The eczema is now worse on parts of my body compared to before treatment, skin still itchy. I also have ITP (immune thrombocytopenic purpura), which means my white blood cells attack red blood cells, and this has made my blood even thinner, so I am bleeding all the time when I scratch. ITP makes my nails brittle and sharp, so I cannot help with the problem of scratching my skin. I believe this medication makes my blood even thinner. Need to get off it and back to methotrexate, please."

• Jay...
• Taken for 1 to 6 months
• January 15, 2022

For Eczema "I had 8 doses of dupilumab over fortnightly increments, and it didn't work for me, so the dermatologist opted to stop the treatment in November 2021. Since stopping, my eyes are constantly itchy and watery, and I have developed alopecia."

• JoJ...
• Taken for 1 to 6 months
• March 22, 2018

For Eczema "I have been on Dupixent for a month now, and I have to say my life is anew. I suffered so badly from eczema (for all of my 48 years) on my feet that I couldn’t walk for 4 months out of the year. The eczema on my hands made it so I couldn’t button my children’s sweaters or wash dishes. Dermatologists and allergists were no help at all. They just plied me with Triamcinolone and Prednisone, to no avail. Patch testing was a wash. After taking the loading dose, I saw an immediate difference in how itchy I was - not one fire ant remained. It is amazing to not feel something that has been part of your existence for decades. My skin has been healing for the last month: smoothing out, losing the thickness of over-steroid ointment usage, losing the red, angry inflammation, peeling like I’ve had a slight sunburn. This drug has been a Godsend to me."

• mur...
• October 18, 2018

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."

• Fin...
• Taken for 1 to 6 months
• January 3, 2018

For Atopic Dermatitis "After having constant eczema on hands, legs, arms, chest, neck, and face, I have found a doctor that was willing to do more than just prescribe steroid creams. I was constantly itching too, it was really affecting my quality of life. I do have allergies which don’t help the situation, but my wonderful dermatologist (the third one’s a charm!) suggested I try Dupixent. I just gave myself the fourth shot this evening. I was nervous about doing the shots myself, but they really are not hard. I prefer the stomach over the thigh. It seems to hurt more when I have done it in the thigh. The main thing that I noticed after the initial two-shot dose was the itching calmed down dramatically. I have also seen an almost 80% clearing of my skin! Awesome drug!"

• Sam...
• Taken for 1 to 6 months
• April 23, 2018

For Eczema "I love Dupixent! Before I started injections, I was beyond miserable. If there’s a worse word for it... I’ve been using Dupixent since January 17, 2018, and within the first day of taking it, I noticed a drastic change. The itch started to cease quickly, and all of my eczema patches started to dry up and peel off. After about a month, many of my active spots healed. The hyperpigmentation on my face, hands, and legs has lightened up. My derm said hyperpig can take a year to go away. I’m fine with that because I never thought I’d be able to look at myself in the mirror and not cry. I rejoice quite often because I have a normal life again. I can cook, clean, and go to work consistently without having to book an appointment. I do keep breaking out around my eyes, the temple of my head, and neck, but it’s not nearly as bad as it was 4 months ago. My eyes itch really badly sometimes, but my doctor gave me something for them. I’ll take itchy eyes over a complete body of hives anyway!"

• ric...
• Taken for less than 1 month
• March 24, 2021

For Eczema "This stuff, after two weeks, had little effect on my rash. It did, however, make me itch all over my body. I live on Benadryl to get by. So, for $10,000, all I got was constant itching and no evidence of curing my rash."

• No ...
• Taken for 1 to 6 months
• January 31, 2021

For Eczema "I've had eczema on my legs, feet, and heels. I got the Dupixent injection four months ago, and it cleared up. But recently, I started itching again and starting to see the side effects: peeling, cracking, and dryness of the inner and upper eyelids. Just a few hours ago, my left lower eyelid (above my cheek) started getting loose and soft. My dermatologist told me there would be eye side effects. I've been waking up with my eyelids stuck together and crusty, I have to use a warm compress. From what I read, the main active medicine that clears the eczema is what makes the eyes break out. Not sure how long the side effects will last, it's only my first shot."

• GF1...
• Taken for 1 to 6 months
• November 15, 2017

For Eczema "I have had eczema my whole life. I started using Dupixent about 3-4 months ago and saw significant results within a few weeks. Recently, however, the redness and itchiness have been returning, and I am concerned. I read in the studies that 20% of the patients in the trial saw results initially (within 3-4 months) but then developed an immunity to the drug so that it was no longer effective. I hope that this is not the case for me. Hoping this is just a minor flare-up."