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Has anyone else been given Xolair (anti IgE/Hyper IgE mediated asthma) injections?
I was given Xolair injections (the highest dosage, injected into my abdominal skin three injections every other week) a year and a half ago to bring my IgE count down and to relieve my asthma. Not only did this drug NOT even BUDGE my IgE (it is now twice as high, and about 5x higher than the highest lab range for IgE), it resulted in me having side effects. My asthma is out of control again, I'm becoming allergic to more and more environmental and airborne allergens, as well as food allergens.
When my inability to respond to this drug became evident, the allergist who was giving it to me decided to tell me it was vocal cord problems and GERD that was causing my asthma (life threatening, anaphylactic asthma). When I quit the therapy, it became evident that the allergist was receiving some sort of payback from the manufacturers and they started calling my home, telling me my insurance wasn't paying (they paid in full 100%), that I HAD to come in to see them (I have a pulmonologist and immunologist now), etc.
I'm still suffering from aches, pains, shortness of breath, hair fallout, swollen joints (the allergist told me this was caused by the Xolair, and would abate soon after ceasing the therapy..I've been off the Xolair for over a year now and I'm still having the side effects).
Anyone else?
Pam
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I'm on the next-to-highest dose of Xolair and soon will have my fifth set of shots. They're injected into the arms and thighs as well as stomach. Have had absolutely no benefit that I can detect but they tell me I need to give it six months.
What has me concerned is what you described - I have it too except for the hair falling out - that part is ok. The listed side effects - think it's 1 in 100 - include arthritis joint pain and general body pains as well as leg pains. I'm worried - need allergy and asthma help and am being told to continue but the side effects are being ignored. Genentech says it takes a year to get IgE levels back to normal but not sure I believe them.
Nobody explains WHY this is happening or what causes it (side efx). Found a govt article someplace saying Genentech doesn't want to pay attention to IgE while on treatment because IgE is raised during treatment. That has to mean something - just want someone to explain it before I get into permanent trouble.
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