Xolair and Headaches: What Users Say

• Mar...
• Taken for less than 1 month
• October 27, 2020

For Urticaria "I've been suffering from chronic urticaria for half a year with daily breakouts. Different parts of my body were always covered with lesions. I was on 3 different antihistamines and tried steroid therapy for a couple of months with no success. I was on the edge of depression because of constant pain and itch. I had my first 300 mg shots a week ago, and now my urticaria just disappeared. Had headache and fatigue the day after the shot, but that was it. This drug was a miracle for me, changed my quality of life, and, for the time being, no major side effects. I will have a better overall idea after six months, I guess, and I will be back with more comments."

• Mel...
• Taken for less than 1 month
• September 15, 2018

For Urticaria "I have been diagnosed with severe urticaria 3 months ago. I was rushed to the ER every night for 2 weeks with anaphylaxis and a horrendous hive reaction, having to have adrenaline administered to ease it. I have now just started my first injection of Xolair. I must say the side effects have not been pleasant. I have experienced severe itching of my eyes, muscular and joint pain, and horrible headaches. Although I have not had a breakout since the injection, I am concerned about the side effects. Can anyone tell me if they have had similar experiences and if they subside eventually? I understand everyone reacts differently, but I am just wanting to get a feel for what others have experienced."

• Ebo...
• Taken for 1 to 6 months
• July 1, 2016

For Urticaria "I began to experience hives and angioedema really, really bad. Every morning I would wake up, my body would be covered, from head to toe. My face would be 10x its normal size. It was devastating and painful to have your hands and feet swell due to hives covering them. My allergist placed me on prednisone, but that is a very mean drug! I was on 3 antihistamines: Allegra, Zyrtec, and Singulair. I was on 2% hydrocortisone, and nothing helped! Until my insurance approved Xolair. It literally changed my life! After day 3 of my first injection, hives disappeared! The only downfall was the horrible headaches and joint pain I experience after the injections. I also have fibromyalgia, and it just intensifies the pain for a few days."

• Bia...
• Taken for less than 1 month
• August 1, 2019

For Asthma, Maintenance "So far, I have had two shots of Xolair. I will say my breathing is somewhat better, I'm not using my rescue inhaler as often as I have been. I'm able to do things that I hadn't been able to do for a long time due to my asthma. I have noticed I am experiencing more headaches than normal, my vision is blurry. My blood pressure has gone up, and my legs ache and cramp. I have mentioned this to my nurse practitioner. I was told, let's keep an eye on it, that's kind of odd, so now I'm at the point where I don't even want to take the shot anymore due to all the side effects."

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

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."

• pba...
• November 19, 2019

For Asthma, Maintenance "I have been taking the Xolair shots for 4 months now, and I have really bad leg pain, and my feet hurt, headaches, and dizziness. When I said something to my doctor about it, he said I must have hurt myself, no side effects of the shots. I'm tired all the time. It really has helped me, but I'm tired of the side effects."

• Ann...
• Taken for 6 months to 1 year
• December 28, 2019

For Asthma, Maintenance "I was given Xolair to control my severe asthma and lung damage that came from it. Xolair did solve my asthma issues. It also helped heal my lungs and stop me from getting constant infections. But the side effects of Xolair are real. I did not have any anaphylactic reactions. I did have body aches that felt like my bones were breaking, headaches, restless leg syndrome, bloating, hair loss, dizziness, tremors, and night terrors. My new health care stopped coverage of Xolair, so I stopped getting the shots. It's been 3 months, and I still have extreme body aches and restless legs. I hope it will go away someday."

• Arl...
• Taken for 1 to 6 months
• October 29, 2019

For Asthma, Maintenance "I was at a point where I had to use Prednisone for approximately 20 days out of every month. I had now developed asthma on top of the COPD. My lung doctor decided on the Xolair for the immunotherapy. I had 1 injection - for 3 months total. It worked miracles for my breathing!! My side effects were headaches and fatigue for the 1st week after the shot. After the 2nd month, I developed bone and joint aches and pain in my legs and plantar fasciitis! My toes and fingers feel swollen (but they're not) when I bend them. I would feel like I'm 100 years old. I was so stiff. I've been taking Motrin on a daily basis for the past 2 months for the pain and stiffness. Some of the aches, pains, and stiffness have decreased - because of the prednisone I'm taking. After I'm off this round of prednisone, we're giving the side effects a few more weeks before contacting the pharmaceutical company for some answers. I hope the side effects aren't permanent."

• Mlw...
• Taken for 1 to 2 years
• December 5, 2019

For Urticaria "I had chronic hives for 2 months, and Zyrtec and Zantac did not help. Prednisone was the only thing that stopped them. I was approved for Xolair in month 3. On the 3rd injection, I no longer have hives. After 12 months, developed side effects of stuffy nose, headaches, chills, hot flushed face."

• MLW...
• Taken for 1 to 2 years
• December 7, 2019

For Urticaria "I had hives starting July 2018, and Zyrtec & Zantac did not help, but prednisone did. After 2 months, insurance approved Xolair. I was told up front it would take 3 Xolair injections to feel relief, and it did. After 8 months of Xolair, I began having side effects of chills, cold/painful hands and feet. After 11 months, I had nasal congestion, sore throat, headaches, and cough that have lasted 4 months with no relief. They start to get a little better, then get worse after injection, but the provider refuses to admit it is Xolair causing it. I am considering dropping Xolair to see if hives are gone, and unfortunately, the only guidance on discontinuing is from Johns Hopkins in that it wears off in 6 to 12 months and has not cured hives. Hopefully, my body has when I stopped. I believe this is a big moneymaker for my provider, who charges me $250 just to give an injection. Thankfully, I have the Genentech/Novartis $5 copay for injection cost and Xolair cost."

• LBa...
• March 19, 2021

For Urticaria "I had severe hives all over my body for 4 months before starting Xolair treatments. The hives started clearing up within a week of receiving my first dose. I have a few days of headache, fatigue, feeling feverish after the injections. It's 100% worth it, though."

• Rub...
• Taken for 1 to 6 months
• August 1, 2024

For Urticaria "I struggled with chronic spontaneous urticaria for 10+ years. My allergist was concerned because I was taking so many drugs at such high doses to control the hives. She had suggested Xolair on a couple of occasions, and I always declined. In February 2024, I had a severe flare that I finally agreed to try Xolair. I had my first injection on March 4. Since that date, I’ve only had one very mild flare shortly after the first injection. In May, my allergist started weaning me off my oral meds. Since that first injection, I haven’t had to retake prednisone or use topical clobetasol. I now give myself my injections at home (300 mg every 28 days). The only real side effect that I notice is a slight headache for a day or so after the injection. Xolair has been nothing short of a miracle for me!"

• Ang...
• Taken for 1 to 6 months
• May 3, 2021

For Asthma, Maintenance "31-year-old female, no known allergies. Woke up one day with full-body hives that did not react well to steroids/antihistamines until I upped my dose to four Zyrtec per day. Started on 300 mg of Xolair 5 weeks ago and am hive-free. No Zyrtec needed. I noticed a headache the first time around and did feel like it made me overly alert, but honestly, I'm super happy to not have to take so much Zyrtec. I just got my second dose and am still happy. Will check back in in 4-6 months. Had to fight with insurance to get approved, but it was worth it."

• Anonymous
• Taken for less than 1 month
• May 13, 2023

"I am taking this for angioedema. I have been experiencing fatigue, nausea, headache, joint pain, sore throat, and viral symptoms. The discomfort at the injection site was minimal. All experienced within the first week, but it’s only been a week, and so far I am not very happy."