Looking For: Personal Experiences With Xolair

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I'm doing a presentation on Xolair as a therapeutic antibody, and I would really like to get a first hand account of the impact this medication has on patients, in all areas of life, including: physical health, side effects, quality of life, family/loved ones, mental health, and anything else you may want to include. Any and all information would be extremely helpful. Thank you in advance.

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1

Hello Katie,

I personally haven't used Xolair, but down below are links to a couple threads where people in the community discuss their experiences with the medication.

Discuss/Xolair-newby-211789.htm

Discuss/Xolair-Omalizumab-Hair-Loss-164886.htm

I hope this helps!

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2

I have asthma and many allergies. Food and environment. I was told that Xolair injections was for moderate to severe persistent allergic asthma. One doctore referred me to another doctor who have patients who he has on the Xolair injections and they were having good results. So I decided to get the injections. May 27th 2011 I had my first injection. My last injection was on Oct 27 2011
I started to loose hair the first week of July. By the middle of Nov the back of my head was completly bald. Also my sides of my head were starting to thin out. During the period I was receiving the injections I would confer with the doctor about the hair loss. without seeing me he would tell the nurse to tell me that I should continue with them. Also I was to remember that there should be some hair loss but the injections would make my asthma better. I decided to go over to the doctors office and I showed the nurse my hair loss. The look on her face told me that she had not seen anyone with hair loss. infact I found out I was the only one of his patients who had hair loss. None of the doctors I spoke with did not know anything about this drug and its side effects. None of these doctors even suspectted that the symptoms I was having were Anaphylasis symptoms. I went to a cardiologist to check me over because I was having dizzy spells and very low blood presure around 75 over 45. My asthma My breathing it was more difficult to breath. (Chest tightness). I have had sinusitis, and headaches. I cough up a lot of phlem. My voice has deepen. I cough a lot when I talking so I have to stop talking.My voice hhas gotten hoarse and I have trouble swallowing. I'm being treated for depression and anxiety. I'm very fatigued. I sleep a lot. I beeing treated by a Ear Nose and Throat specialist. He has gone down into to my throat to my voice box the area around it is very red. I could go on and on with my symptoms. If you need anymore information I can supply it to you. PS I'm still loosing hair. I've had to buy several wigs to cover my muti colored white and grey hair that is coming in. My beautician said I never had that amount of white and grey in my hair. Infact I had very little grey before the injections started.

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3

Hi Katie. I started taking Xolair for chronic hives, not asthma. It's been a miracle for me. I had been on prednisone for over 10 years. The xolair actually works less, as time goes by, I need a higher dose. I have had no side effects as far as I can tell.

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4

Xolair is a game changer for me. I'm lifelong asthmatic and cops sufferer. I never bowed to my illness and strove to be as strong and fit as possible considering. I raced mountain bikes and even went as far as representing my country. Everything went very badly wrong for me due to aspergillosis which was diagnosed eventually by an absolutely amazing person I met along the way. After a spell in hospital last year I was slow recovering until I was put on xolair. One year later in healthier and fitter than ever before. I'm on way less of my regular meds and look forward to more improvement In the future thanks to xolair and the very special people at my local hospital.

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5

I got hives after my xolair shot and felt dizzy ten days later. Also had muscle cramps and headaches. As of day four there's been no relief from the itching. Will it eventually work or am I having a sensitivity to this medication?

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6

Does anyone else know if their Vitamin D level has been effected by the Xolair injections? My level was perfect last year and now it's extremely, extremely, low. I was put on a huge amount of medicine to try to get it back up. I have a ton of symptoms that may or may not be from it but have gotten worse while taking it. Example: Inner ear pains, hearing is getting worse, headaches, cramps in muscles, bones hurting, extremely low energy after the shots, pain in arms for weeks after shots, and many more. I have recently had all my blood work along with extra to try to find out what's going on. My thyroid medication is working great, so it isn't my thyroid. I do not have diabetes, calcium & magnesium levels are really good, along with all other levels. I'm debating stopping my Xolair even though my breathing is better. I'm only in my middle 40's & do not want to end up with osteoporosis or something even worse.

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7

It was on it 10 years ago or when it first came out as a trial. For me it was a miracle. I'd never breathe so freely in my life, no side effects, even after I stopped taking it because the trial ended and my insurance wouldn't cover it. The effects lasted for over 4 years after 4 years of chronic asthma and bronchitis. Again I made a push to get my new pulmonologist to prescribe it again. I just started last week and I'm hoping for the same miracles as before. This time the drug company provided it for free because the cost is just insanely prohibitive, but there are programs if your doctor pushes the drug companies for it.

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8

Unbelievable drug - huge improvement in quality of life - ran marathon last couple of years

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