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Does anyone worry about the side effects of Omalizumab / Xolair

Hi everyone, my son has had Omalizumab now since june 14th 2007, he is only 10 years old and it is not licenced to children under the age of 12 years old. It has had a positive effect on my son and has definitely helped towards not having as many courses of Prednisolone.... No one can tell me what the side effects are in years to come and this worrys me as after all it is me as a carer that has consented to him being administered this... It tooks months for me to actually say yes to this as I was really scared about side effects ect..... After our 16 week trial I thought that perhaps we would get the choice to come off the injection if need be... I was told that my son had a positive response to the omalizumab, which I thought great..... I then asked if he could come off it if he remained well for a period of time, the registrar then said to me that if he was to come off it now they have found that patients can become less well than they were originally.... My son was very poorly and his peak flow has gone as low as 80 on the peak flow monitor, this has frightened me and I am wondering if I have picked this up properly..... Would love anyone to through any light on this....

Take care everyone and thanks for your ongoing support.

Beverley xxxxx

1 Reply

hi there I also worry about the long term affects of omalizumab. I am currently on the medication and like your son I have also had a very positive reponse. I am 19years old and i also had to have a long hard think about accepting the trial. The way i see it however is that all medications have some element of risk. The truth is i try not to worry about the side effects as my quality of life before was almost non-existent. In a way im relieved to be on fairly low doses of prednisolone as the side effects were a nightmare for me. The only reason i am on low doses is due to xolair so i take that as part and parcel of my treatment. i think no one knows for sure what the long term affects will be, but from a short term prospective its certainly a chance for me to lead a ""normal"" as possible life. Compared to before it has been life changing and given the chance i would not change a thing.


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