Omalizumab and Itching: What Users Say

• Jan...
• Taken for 1 to 2 years
• June 10, 2020

Omalizumab for Urticaria "Xolair is honestly a miracle drug for me. I had been experiencing full body hives (autoimmune urticaria) for months and I had reached my breaking point as no antihistamine worked. Then came Xolair. It took some time to work, so you have to be patient, but once it did, my quality of life dramatically improved. I no longer experience hives, although I can tell when it is wearing off because I will start to itch a bit (nowhere close to what my hives were like before). I receive monthly injections."

• Tir...
• June 19, 2020

Omalizumab for Urticaria "I am female, now 56. Had experienced chronic urticaria lasting a few months, probably 3 times over approximately 20 years. The episodes occurred and disappeared on their own. However, 2 years ago, it came again and I tried the Zyrtec, Benadryl, Zantac, etc., I only had relief with prednisone. Eventually, I got approved for the monthly Xolair and have been going to the hospital monthly for 2 x 150 mg injections into the stomach. My concern was when do I stop taking these injections, given the hives may go away. I have been gradually delaying my injection by a week each cycle and have noticed that by week 8, a small amount of hives starts to appear. I know the discomfort of severe hives, so I am very reluctant to stop injections in fear of it returning, but I am now starting to have severe knee pain and struggle to lift myself when I kneel down. Other recent issues have been redness/rosacea on my face, which I now take different medication for and am unsure if it’s related to the Xolair. Is anybody else experiencing this?"

• Th3...
• Taken for less than 1 month
• June 30, 2015

Omalizumab for Urticaria "Yesterday I received my 4th shot. For the past 2 months, it seemed after week 3 I would start getting small patches of hives. This last month, on the 3rd week (week-10 days before I was due to receive my shots), my hives came in pretty bad. My ankles and feet start to itch, then it works its way up my legs to my mid-torso. I have to say I'm panicking since receiving my shot yesterday, and taking 2 Benadryl, even 4-5 hrs, and Zyrtec, I'm covered with itchy hives!! Can it be that our bodies become immune to the Xolair?? Please let me know because I feel like my freedom is taken away from me, right as I was so happy and confident being hive-free."

• Cha...
• Taken for 1 to 2 years
• December 4, 2019

Omalizumab for Urticaria "I was diagnosed with CIU 2.5 years ago, but have been suffering for over 6 years. I have been taking Xolair for almost 2 years now. In the beginning, it did wonders for me. I had no flare-up, almost no itchiness at all. It was a miracle. Then this summer, after 1.5 years of 350 mg/4 weeks, it stopped working. I am taking 100 to 150 mg of Benadryl every 6 hours, and still, the itching is driving me crazy. To be able to sleep, I need to strap an ice pack to my legs and arms to calm the itching. Anyone else is in the same boat? Thanks."

• Loc...
• Taken for 1 to 6 months
• September 19, 2019

Omalizumab for Urticaria "When I read Itchyallover’s review, it was as if I'd written it myself. It took effect 2 weeks before the 5th injection, but 10 days later, it stopped. The clinic nurse said it often wears off a few days before the next one is due. It took effect again 3 days after the 5th injection, but I've already had two bouts of CIU since then. I can’t rely on Xolair yet; that’s why I gave it a 6. I'm due for my 6th injection in 10 days, and I’ll review again if things improve. Only acupuncture plus a Chinese bitter herb drink twice a day has kept me sane. I avoid all dairy products, reduced sugar, and only drink green tea or water. Like “Itchyallover,” I have run through all my savings for acupuncture 3 times a week and the cost of herbs. I also take Warfarin, so I can’t take Prednisone. Give me the pain of every surgery I’ve ever had (ten), than 1 hour of itching; it reminds me of a biblical plague. My daughter describes it as 'a plague of locusts - under the skin'! There has been some research showing patients with chronic urticaria have low vitamin D levels, and studies show taking high doses of Vitamin D3 can reduce it. Some research on it, the study is 'Relationship between vitamin D and chronic spontaneous urticaria: a systematic review.'"

• 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."

• Sha...
• Taken for 1 to 2 years
• March 17, 2025

Omalizumab for Urticaria "It worked great in the beginning, a year ago. The longer I use it, it seems to be less effective. I've now had hives 24/7 for 3 weeks. No relief from itching, skin is bruised from scratching. I've experienced hair loss, a cough, and at times my tongue swells. I'm currently taking 150 two times. Dermatology doctor has increased it to 2 injections two times a month. March will be my first time to use this much. Further testing is being done now, March 2025, and it seems I may need to change medications. Testing is ongoing at this point. Along with Xolair, I've been taking antihistamines daily. It all helped in the beginning, but the doctor thinks I have something else going on."

• 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."

• nan...
• Taken for less than 1 month
• June 28, 2017

Omalizumab for Urticaria "I've had hives off and on since 2002. I am 52 years old, and I've been diagnosed with Hashimoto's and lupus. I was tired of hive breakouts and constantly taking Benadryl, so I decided to start taking Xolair. Within a half hour after the shot, my hands got red and itchy. I told the nurse, she seemed unconcerned. I got very tired, went home, and slept half a day! That night, I got three hives on my leg and arm. The next morning, I was achy all over and got dizzy with a headache. I report I also got some chest heaviness. I called the doctor, and he said it was not from Xolair. I can stop Benadryl, but he wants me to continue shots. So far, I can't stop Benadryl because I'm still itchy! I don't know if I should get the next dose because I don't want worse side effects. Want to eat again."

• CKa...
• Taken for 2 to 5 years
• November 22, 2020

Omalizumab for Urticaria "Xolair has changed my life for the better, and I have been asymptomatic since starting monthly injections. I had chronic idiopathic urticaria (CIU) and angioedema for the past 20 years. I had been trying high doses of antihistamines, NSAIDs, acupuncture, basically anything to stop the itching and swelling. At one point, I was put on prednisone, only to have the CIU come back after tapering off. Then I worked with the doctor to test Xolair. It has worked amazingly well. I get injections once a month, and for the most part, am asymptomatic. I have no side effects. Sometimes before an injection, I will have itching, but the next injection quickly alleviates symptoms. Xolair has been transformative at changing my quality of life. I am so much happier and healthier now."

• Alp...
• Taken for less than 1 month
• March 13, 2018

Omalizumab for Urticaria "I'm on here because my mom takes these shots for idiopathic chronic hives. It isn't working for her unfortunately. We live states apart, and I've had some similar allergic reactions to some of you, but I had some luck in discovering the foundation for it. It's a 'rare' but becoming much more common allergy to mammalian meat and all mammal meat by-products caused by a tick bite called Alpha Gal allergy. Itchy hands and feet and delayed reaction are big indicators for it. There is a simple blood test to find out, and then you have to avoid mammal meat and their products like the plague. You can still eat poultry and fish, etc., but for some severe cases, you have to be a strict vegan about EVERYTHING. You would not believe the amount of everyday products that use the fat from a cow or the blood of a pig, etc. pretty gross, actually. Once you eliminate most to all of these, life improves dramatically! Anyway, hope this helps some of you!!!"

• Alp...
• Taken for less than 1 month
• March 13, 2018

Omalizumab for Urticaria "I'm on here because my mom takes these shots for idiopathic chronic hives. It isn't working for her unfortunately. We live states apart, and I've had some similar allergic reactions to some of you, but I had some luck in discovering the foundation for it. It's a 'rare' but becoming much more common allergy to mammalian meat and all mammal meat by-products caused by a tick bite called Alpha Gal allergy. Itchy hands and feet and delayed reaction are big indicators for it. There is a simple blood test to find out, and then you have to avoid mammal meat and their products like the plague. You can still eat poultry and fish, etc., but for some severe cases, you have to be a strict vegan about EVERYTHING. You would not believe the amount of everyday products that use the fat from a cow or the blood of a pig, etc. pretty gross, actually. Once you eliminate most to all of these, life improves dramatically! Anyway, hope this helps some of you!!!"

• 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."

• Aly...
• Taken for 2 to 5 years
• June 13, 2018

Omalizumab for Urticaria "I had been getting hives head to toe for 3 years before trying Xolair. Honestly, it was so miserable. I had two allergists trying me on prednisone, Singulair, doxepin, something like that (in short, it was a crazy pill regimen), and that didn't even alleviate the hives in the slightest - just made me depressed and jittery. Until one day, I went to a new doctor and he let me try Xolair. Immediately after the first shot, my hives were 80% better, and by the second shot, 4 weeks later, I was 100% no hives. My skin is super sensitive in general, so sometimes I still get itchy, or if I go past my 4 weeks, some hives develop again. But it is so much better than waking up red, blotchy, and itchy every freaking day. Xolair has really changed my life. Although, I wish it was more definite when I can get off of it. I think you kind of just have to wait for your body allergies to change (meanwhile Xolair will still suppress the hives). All in all, I would still get on it if I had to do it again."

• 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."

• Itc...
• Taken for 1 to 6 months
• June 24, 2019

Omalizumab for Urticaria "I have had chronic spontaneous urticaria for 9 months. After going through all the OTC drugs and prescription drugs, I was started on Xolair injections 6 weeks ago and have had 2 shots. I have experienced no change in the severity of the hives nor the itching since starting the injections. I've been told Xolair can take 12 to 16 weeks to fully take effect, so I'm still hoping it will work. In the meantime, I'm losing sleep, tearing at my skin, and have become a recluse as I don't want people to see me scratching all the time. I started having acupuncture, cupping, and herbal treatment 2 weeks ago, and that helps for a day or two. However, the cost of 3 to 4 acupuncture treatments a week has resulted in my savings all gone just to get some relief from this infernal itching. I have been to the ER, and they can't give me prednisone or other steroids as I'm on warfarin."

• Asi...
• Taken for 1 to 2 years
• November 22, 2023

Omalizumab for Urticaria "In 2022 summer, my hives started popping up every other week or so, and I would only get hives where my clothing was pressing the most on my skin, like the knot that you tie behind your neck from a halter top. After three months of what were hives every other two weeks or so in isolated areas, they grew to palm-sized hives randomly throughout the day, all day, from my scalp down to my feet. I couldn't leave my house, I could not put clothing on, sleep comfortably, cuddle my animals, or even move without extreme itching and pain. I was eventually diagnosed with chronic urticaria and prescribed Xolair in Dec 2022. It is now Nov 2023, and I am taking the shot every 6-8 weeks, and my life has drastically changed. I am thankful for this drug and the Genentech Foundation, who aids in making this drug accessible to me ever since I was laid off."

• Ms ...
• Taken for 1 to 6 months
• December 2, 2019

Omalizumab for Urticaria "I have had CIU (chronic idiopathic urticaria) once before in the past about 10 years ago. I can't remember how long I had had it, but I woke up one day and it was gone. In June this year, I noticed I was itching more than normal, and my nightmare CIU was back. Needless to say, I still have it, and it is worse. I have had 3-4 shots of Xolair, and I have no results yet. The shots hurt, and I hope at the end of the day it's worth it."

• MAR...
• Taken for 1 to 6 months
• April 22, 2022

Omalizumab for Urticaria "I received my first injection about a month and a half ago. I just received my second injection this past Monday, and I am still itching! I am not sure how long this medication takes to officially make you stop itching. I am at my boiling point with dealing with these hives on a daily basis. Has anybody else had a similar experience where it takes a couple of months to stop itching all over your body?"

• Axg...
• Taken for less than 1 month
• January 22, 2016

For Urticaria "I just had my first round of Xolair. I fought really hard to get it approved and finally got the two shots 10 days ago. I did not get relief from it, unfortunately. I itch all the same. Plus, I have had daily migraine headaches. The day after, I was in bed all day with the headache, and it has been very hard to function normally after the shots. No relief, weakness, daily headaches. Give me the misery of just the hives back!"

• Twi...
• Taken for less than 1 month
• August 23, 2022

Omalizumab for Urticaria "I just got my first shot of Xolair TODAY, for solar urticaria and chronic spontaneous urticaria, including angioedema that comes and goes, caused by random stuff-no confirmed allergies. I am a 45 y/o female in Florida, and we have a LOT of sunlight, so I have been using an umbrella, long sleeves, hats, and curtaining my house for two and a half years now. Today, that changed!!! I couldn't believe it. Within 5 hours of having the shot, I stood in sunlight with no protection, with minimal discomfort! My tiny numerous hives are down by 50-75% in numbers already! My face is still flushed, but my skin doesn't really itch like crazy now. This is a miracle drug!! I am praying this is a cure for me. I only had a 150 mg sample shot today, probably due to having milder symptoms. I also feel like my inflammation is better all over, already!!! Awesome stuff, thanks a lot, my Xolair peeps!! Also, I have had high blood pressure lately, so maybe this will bring that down while I lose weight again. Yaaaay! Happy!"

• 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."

• Tif...
• Taken for 1 to 2 years
• June 2, 2017

For Urticaria "Xolair has cured my chronic idiopathic urticaria (CIU). No breakthrough hives while I've been on Xolair now. Since the first treatment, I got no side effects, and the hives stopped coming back. If I push my injection far out beyond monthly injections, I have so far not had recurring attacks. Worst-case scenario, I began to feel a little itchy like I almost 'felt' like it was time for my injection. It has been a year, and it is not cheap. Insurance is only 50%, and the pharmacy prices are outrageous. I only afford this medication through a foundation to cope with costs. The doctor is discussing spreading it out further so I could possibly go longer between doses. I am keeping a positive outlook. But fear going off Xolair only to get back on it when it comes back. It works."

• Jun...
• September 9, 2018

For Urticaria "I have had chronic hives for over 20 years. I've been on a variety of different meds, and although the hives would go away for a bit, they would be right back. Recently, the hives have been horrible. Not just the hives themselves, but the burning skin. A couple of years ago, my allergist started talking to me about Xolair, but I was afraid and wouldn't do it. Lately, because of being so miserable, I decided to give it a try, although I refused to take more than the 150 dose. Today is Sunday, and it was Thursday afternoon when I had my first shot. I do still have hives, but they are no longer painful and are controlled easier with Zyrtec. The itching is barely there. I have actually slept all the way through the night for the last three nights! I am excited and glad I finally gave in and got the shot! I may go for the 300 dose next time around, but who knows, if the hives are completely gone in the next three weeks on the lower dose, I will stick with that."

• Mon...
• Taken for 1 to 2 years
• September 17, 2022

Omalizumab for Urticaria "Xolair took a while for it to work, maybe 5 months. Once it started working, I did not have a hive at all for an entire year. Then, randomly, a couple of weeks ago, it just stopped working. The doctor thought it was due to switching to 8 weeks, so I’m still on it. But my hives are extremely itchy and are everywhere. Super annoying."