Xolair - Mini Strokes

My daughter Catherine (age 17), had an extreme case of Chronic Idiopathic Urticaria (lasted over a year).

We saw specialist at Nemours Children's hospital (Orlando, FL) and they recommend Xolair inj's. as a course of treatment. She has had 6 months of infusions.

Although her hives are under control with the help of this medication, the side effects are a bit alarming.

Each time she has the shots done, she becomes very confused, dizzy and lethargic. She has trouble remembering things and seems as though she's intoxicated (stumbling around). To the point where she is vomiting and unable to function normally. She has to stop life and just keep her eyes closed and rest. This lasts for 4 to 5 days.

After the side effects wear off, she has told me she has shocks in her head (Brain). Painful bolts of pain that rise up from her neck into her skull. They can last for several seconds to a minute and happen at random times.

Catherine has also told me that she feels she is unable to retain information like she would prior to the infusions. She studies and restudies her school work, yet she seems to forget most of everything she reads. She is an extremely intelligent girl, so this is very frustrating for her. She told me she feels like she has Alzheimers.

I informed her doctor each time she had the inj's. of these side effects and he would tell me that Xolair did not cause these types of reactions.

In December (2015), after another monthly infusion of Xolair, my daughter had the same horrible reactions. This time I decided to research the drug online, only to find out that the FDA recently issued a Black Label warning on the drug. It read that one of the dangerous side effects could cause tightening of blood vessels to the brain, resulting in Mini Strokes.

I informed her doctor about my findings and he was shocked. He said he had not heard of these new studies. He said that we would stop using Xolair and that my daughters condition would improve as the medication weakened in her system. That I had nothing to worry about and that she would be fine.

I asked if we should perform a CT scan to her brain. He suggested not to do so. He said her memory would improve and these studies of Xoliar that showed negative results were done on 40+ year old patients, who smoked and were over weight. And that the findings were so small that it really did not pertain to my 17 year old daughters condition. Basically, that she would be fine.

So, I'm not sure what to do. She seems to be feeling better. But its been 4 weeks from her last infusion. She still has painful shocks to her brain and has some retention issues.

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Hello, Susan! How is your daughter doing? I'm very sorry about what she's been through.

As reported by the FDA, this medication can cause a lot of problematic side effects, including mini-strokes, just like you've stated.

If she is still experiencing such a symptom, then the best suggestion I can make is to take her to see a different doctor. You are correct that it should be checked out, just in case.

Has there been anymore improvement?

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