Omalizumab and Swelling: What Users Say

• Twe...
• Taken for 1 to 2 years
• April 9, 2013

Omalizumab for Asthma, Maintenance "I have been taking Xolair injections for about a year now. My family doctor suggested that we try it because for the past 12 years I had such bad reactions to dust, mold, and any animals. After years of the typical allergy shots at the doctor's office, and having reactions from them - face swelling, throat shutting off, using the EpiPen - it was a weekly thing. Going to the grocery store and praying that the person in line did not have a cat at home, yikes! Well, Xolair is AMAZING! My family doctor 'diagnosed me with asthma' so I could get this medication. Though I only have asthma from the allergies, this medicine REALLY WORKS! Thank you for giving my life back! I can go all month now without an EpiPen injection!"

• San...
• Taken for 6 months to 1 year
• August 5, 2015

Omalizumab for Urticaria "I had CIU for a year and a half before my first Xolair shot. For six months, I never went a day without hives, experienced lip swelling and face swelling once (never want that experience again). I was told by my allergist that I had exhausted all types of therapy, so Xolair was my last and only option. My first shot was in January, three days later, I was hive-free. I took monthly shots for six months, no hives, so we decided to try six weeks between shots, no hives. It is August now - no hives! Yes, it is expensive, but not being covered with hives from my head to my toes makes that worth it. I would agree that it has made me gain about 10 pounds, and I work out just about every day. I look like I am pregnant but am not ready to give up yet."

• San...
• Taken for 6 months to 1 year
• August 5, 2015

Omalizumab for Urticaria "I had CIU for a year and a half before my first Xolair shot. For six months, I never went a day without hives, experienced lip swelling and face swelling once (never want that experience again). I was told by my allergist that I had exhausted all types of therapy, so Xolair was my last and only option. My first shot was in January, three days later, I was hive-free. I took monthly shots for six months, no hives, so we decided to try six weeks between shots, no hives. It is August now - no hives! Yes, it is expensive, but not being covered with hives from my head to my toes makes that worth it. I would agree that it has made me gain about 10 pounds, and I work out just about every day. I look like I am pregnant but am not ready to give up yet."

• Mer...
• May 2, 2016

Omalizumab for Urticaria "I'm on Xolair for chronic idiopathic urticaria. This shot has changed my life! I just had my 6th one today, I only get breakthrough hives about once a week, and it's not very bad. My dermatographia and angioedema are completely gone. I've been able to get off most of my antihistamines and prednisone as well."

• Chr...
• November 29, 2017

Omalizumab for Urticaria "I am beyond disappointed that Xolair had no effect on my chronic urticaria. For 18 years, I have suffered with the disabling disease. My hives are so bad, I cannot even wear clothes because anything touching my skin causes unbearable pain, swelling, redness, and my eyes become bloodshot/swollen, and pus comes out of them. I also have full-blown lupus, and I am human leukocyte antigen (HLA) B27 positive (HLA-B27 positive). My life is completely ruined and over. Can't work, have zero support from anyone, live in poverty (thank you, SSD), lost my home... horrible situation. Xolair did nothing. Not one thing! Pain, redness, swelling, itching still there after two months with two treatments of two shots a month. Beyond depressed. It is hard to live like this."

• Dli...
• June 14, 2018

Omalizumab for Urticaria "I started getting large, itchy, and painful hives 5 years ago. I have had multiple allergy tests. I was put on Xolair, and it worked wonders. I lost my insurance, so now I cannot afford Xolair without insurance. My condition has worsened. This past month, I have gone to the ER. The hives are the least of my concerns now. My tongue, lips, throat swell, and I go into full-blown anaphylaxis. The only thing that helps is epinephrine, a steroid, an antacid, and Benadryl, all given intravenously. It’s sad. I will keep searching for help. A nurse in one ER spoke with me once I had stabilized. He recommended that I read a book called Eating for Your Blood Type as well as histamine intolerance. I now avoid fast foods and all sorts of pickled and cured foods, as well as any foods that sit around because they contain additives and preservatives. I’m afraid to eat now, and I’m craving sugar like mad. I believe I am histamine intolerant and may have some mast cell condition situation."

• Puf...
• Taken for 1 to 2 years
• December 19, 2019

Omalizumab "I had severe edema. My lips, eyes, and face would swell constantly. I was on 60 mg of prednisone almost every day. It worked, but I had terrible side effects. Xolair was a life changer. I haven't had a swelling episode since my first shot. It's been a little over a year, and the only side effect I've had is I get a little tired the day of the shot. I wish it worked for everyone like it does for me. ❤"

• Tre...
• October 31, 2016

Omalizumab for Urticaria "I developed hives and unknown swelling since I was 18. My life was miserable. I was always in the hospital. I hated it so much. I was so depressed all the time. I felt like I wasn't living. Xolair really gave me my life back. I have been on it for 5 months. So far, so good :) I wish I could hug whoever made this drug!!!"

• Mad...
• November 16, 2017

Omalizumab for Urticaria "I was very hesitant to start this medication because of all the warnings I came across online. After 4 months on this medication, I can honestly say it has 100% improved my life. I had hives and angioedema covering most of my body. The pain and hives would come and go and change from day to day, but I was for the most part homebound because of it. I was taking Benadryl (like Tic Tacs), Zyrtec, Singulair, Fatidomide, and Prednisone for the really bad breakouts. Within the 1st week after the 1st shot, I saw significant improvement. Now I only have some breakouts right around the 28th or 29th day of the next shot that is due. I would highly recommend this medication for chronic urticaria."

• Anonymous
• Taken for 1 to 6 months
• June 21, 2016

Omalizumab for Urticaria "In early November 2015, I started breaking out in unexplained hives. It started with huge welts larger than my palm, and I'd get them all over my body, some small, some big. From my scalp to the bottom of my feet, welts have shown up, and my lips and fingers have swollen so badly. Xolair has made a marked difference for me. It hasn't completely cleared me up, but the amount of hives has dramatically decreased. I still get angioedema though, but I don't panic like when it first started happening. I'm hoping as time goes on 1 - the hives will just go away completely (haha we all wish for that, right?) and 2 - if the hives don't go away, the shot will continue to lessen the severity of the breakouts."

• ban...
• Taken for 2 to 5 years
• December 13, 2018

Omalizumab for Urticaria "I have been on Xolair since November of 2016. Overall, this has been a very effective treatment for me. Besides a few 1-2 month flare-ups, I have seen a significant improvement. Untreated (and during flare-ups), I break out in hives 2-3 times a day every day, frequently with swelling in my face, lips, hands, and feet. Xolair has decreased this to almost no hives."

• ban...
• Taken for 2 to 5 years
• December 13, 2018

Omalizumab for Urticaria "I have been on Xolair since November of 2016. Overall, this has been a very effective treatment for me. Besides a few 1-2 month flare-ups, I have seen a significant improvement. Untreated (and during flare-ups), I break out in hives 2-3 times a day every day, frequently with swelling in my face, lips, hands, and feet. Xolair has decreased this to almost no hives."

• Moo...
• November 3, 2016

Omalizumab for Urticaria "I'm 58 and female. After a hive-free life, I left my home in the S.J. Valley, where the air is terrible (pollen and allergens are bad) to go to Hungary. I had no problem there, but as soon as I got back, I had lost all immunity to the valley, and hives came. After 9 months of hives, huge and tiny, itching, burning swelling hands, bottom of feet itch and swell, 2 trips to the ER for anaphylactic shock, epipen, prednisone, Benadryl, 2 Kenalog shots, Singulair, Zantac, Xyzal, Zyrtec, and Xanax, after much research, I found Xolair is the only med approved for hives. I FINALLY got started. I am getting 150mg every 2 weeks rather than 300mg p/mo. It seems slow but gradually better. Still get rash, hives shrunk size and amount, only need 2 pills/not 12. Hopeful."

• Hon...
• June 12, 2018

Omalizumab for Asthma, Maintenance "Highly recommend Xolair. Was in the clinical trials for Xolair well over 10 years ago. Before Xolair, I was a severe asthmatic who could be found in the hospital almost monthly due to allergic asthma. I received 2 injections every 2 weeks... until I became allergic to it. The company requested - and received - my DNA in order to help them understand why I became allergic and to help others in the future. Xolair was a miracle drug for me - and still is. We don't know why, but it seems to have had a residual effect of some sort with me. A year after stopping the injections, I was stung 2-3 times by yellow jackets. I would have immediately gone into anaphylaxis without the residual effect of the Xolair. Instead, I drove myself to the ER (EpiPen ready to use) without any problems. There was a 'typical' reaction of swelling and pain around the site of the stings with no other reactions."

• Lon...
• June 25, 2017

Omalizumab for Urticaria "Chronic hives for 1 year - took all the antihistamines and prednisone. The only thing that kicked the hives was a prednisolone pack that I recently took after the Xolair shot did not work. I have had 8 Xolair shots (monthly injections), and at first, they were very effective. After the 6th one, I had recurring hives and angioedema return, so I am back on a large dose of Allegra and am nightly taking hydroxyzine. Xolair seems to help with the size of the hives and the amount when breaking out. Weight gain is definitely noticed, but due to prednisone prior to the shot, I can't be certain it is all due to Xolair. Will continue on Xolair and perhaps look at a Kenalog shot."

• Jul...
• May 20, 2015

For Urticaria "Yeah, well... we ended up at the end of the road with the Xolair for my daughter's treatment for her chronic hives. Every day of being miserable, covered in hives that itched, burned, and were severely painful, along with swelling of many parts of her body to excruciating levels. She started the Xolair injections in January 2015. For the first three months, they worked wonderfully. She only had minimal hives. After the April injections, she flared up that same night and has every day since. I thought at first they gave her the wrong shot in April, and then for the May shot, we'd be able to know for sure if they gave her the wrong thing. Well, we had the May injections last week, and the same thing. She's covered in hives."

• Jea...
• Taken for 6 months to 1 year
• July 24, 2015

For Urticaria "I've had CIU for 15 years, have been to docs from Boston to Colorado, and more cocktails of different medications on and off label. The hives took away lots of my life! Welts and angioedema. Started Xolair ten months ago. Very few hives for several months, then they were all gone. After 5 months, I came off all other antihistamines. Now hive-free! Still get one shot once a month."

• Obi...
• January 12, 2020

Omalizumab for Urticaria "I took Xolair for over 1 year; at times I would get hives. My issue: I still had to take Zyrtec, Allegra, Singulair, Zantac, and Benadryl at least 2, sometimes 3. I used to have lip swelling, and that definitely improved; however, my last shot was Dec 6. Our insurance changed, so I have not had a Jan shot, and this morning I have broken out again. My problem with the shot: if 3 or pills work, why pay so much for it? I have had hives for 29 years."

• yov...
• April 4, 2015

For Urticaria "I have had pretty severe CIU for a couple of years now. Before the Xolair, I was taking cyclosporine BID, Plaquenil BID, Allegra BID, ranitidine BID (and other various doses and combinations of antihistamines to no avail), prednisone PRN (whenever I developed angioedema, which was a few times a month), and I was about 50% controlled (once or twice daily, mild to moderate outbreaks with severe outbreaks about 1x/week). I was able to add Xolair last June. It took a few months, and I have not been able to get off any of my other medications, but I am at >90% control. I feel like I have my life back. =) I am still hoping I will be able to get off some of this other stuff, but at least I feel normal again."

• Abb...
• Taken for 1 to 2 years
• December 7, 2015

Omalizumab for Urticaria "Urticaria: I'm 34 years old, Indian male and working in UAE for the past 3 years. Suddenly, one day, I developed hives and swelling on my lip, then consulted a dermatologist and started to live with an antihistamine tablet called Lezine. All three reports, blood, urine, and stool, were normal. But these hives used to come on my body almost once a month, but they were not severe ones. It used to be on my thighs, legs, and shoulders, sometimes on my lip. I was not able to trace the reasons. I did an IgE component test, it was expensive, however, this was also normal. Today, I finally planned to go on Xolair injection, took 2 shots same time, i.e., 300 ml, thank God my insurance approved this expensive injection. I will update you guys accordingly about the effect."

• Jol...
• Taken for 1 to 6 months
• January 8, 2023

Omalizumab for Asthma, Maintenance "I was on pre-filled injections twice a month for 6 months to treat my pulmonary aspergillosis and improve my IgE levels. This drug has ruined my life. Not only did it not help my breathing or IgE levels (went from a 1300-3000), but I went from 95 lbs to 112. I can’t stop eating since I got this. Plus, my legs, arms, and face swelled up, and I had heart palpitations. I discontinued the injections in November, and I’m still swollen and ravenous constantly. I’m trying to lose weight and control my hunger, but it is impossible! I read this stays in your system up to 6 months after stopping, so that could be why. I have no idea what this has done to me, but I’m furious that severe weight gain is not listed as a side effect. I went from a disciplined, extremely healthy person to being a completely out of control binge eater. I do not recommend this treatment to anyone!"

• tay...
• Taken for 1 to 6 months
• July 16, 2019

For Urticaria "Have had severe hives/swelling for every day now for 4 months. I am now on four 180 mg fenofexadine a day, 2 rapatadine 10 mg a day, 2 montelukast 10 mg a day, and 2 ranitidine 350 mg a day to control it. I had no swelling since I upped the dosage but still hives every day. Now had to get 2 injections every 4 weeks for 8 weeks. After reading reviews and seeing how it worked for others, it's done nothing but make my hives worse. After two 150 mg injections, 1 in each arm, the days after I've been 10 times worse. I hope the next time it helps or I think I'll stop the injections. The hives are not always itchy but worse now that it's hot and muggy. Also, hives always appear at night."

• Miz...
• Taken for 6 months to 1 year
• October 23, 2020

For Urticaria "I love these shots. I didn't even realize how poorly I was breathing or how swollen I was all over. Removing the edema has helped remove excess pressure from arthritic joints, so they even feel better. I had to miss 6 weeks due to a pharmacy glitch, and I can definitely tell now. I look puffy. I am breaking out in hives again. Migraines and hemifacial spasms, all the old symptoms have returned. I can't wait to get my shots tomorrow. I never wanted to go get my allergy shots. They did nothing for me. These are a lifesaver."

• hiv...
• Taken for 1 to 6 months
• May 29, 2020

For Urticaria "My hives began back in 2000, and at that time it was discovered that I had Hashimoto's thyroiditis. My levels were all over the place, and I began Synthroid as well as a bunch of courses of prednisone (the only thing that really helps), antihistamines, you know the drill. I also deal with angioedema and have had routine trips to the ER because of the severity of it all. My hives typically last about 1 1/2 years each time before they go into remission. This is my fourth round of hives as I also flared up after my sons were born each time, again, I believe thyroid got out of sorts after they were born. The last time we overlapped prednisone and hydroxychloroquine for about 3 months, and I got back into remission. This time my allergist wanted me to try Xolair, which doesn't seem to be helping even after 3 doses. Does anyone else have either the angioedema with their hives or Hashimoto's? If so, is the shot helping for you?"

• Joy...
• Taken for 1 to 6 months
• July 29, 2021

Omalizumab for Urticaria "My hives and angioedema flare up worse after the injection, and I have to go on steroids."