Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 I'd be interested in any accounts of people who, after a period of Xolair administration, have seen the benefits fade as the body/disease adjusts. I'm especially interested in what doctors have said, what testing has indicated, about any instances where there has happened: Any explanations, theories, lack thereof? Not because I had such an experience about Xolair, but for what light it might shed on ways Xolair can be helpful, on pathologies underlying our diseases. Thanks, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 My doctor and I have found that higher than normal levels of exposure to allergens can challenge Xolair and make it seem less effective, especially those of us who continually make tons of IgE - it means that there are more allergens there to compete with Xolair on who gets to bind to the IgE first and trigger a " mast cell mating. " Example - increase molds following a bad rain, or roof leak. I had a terrible spring, for example, as did most of us, with the pollen really high this year. Addy Group co-owner --- In , " Mark Headley " <mjheadley@...> wrote: > > I'd be interested in any accounts of people who, after a period of Xolair administration, have seen the benefits fade as the body/disease adjusts. I'm especially interested in what doctors have said, what testing has indicated, about any instances where there has happened: Any explanations, theories, lack thereof? > > Not because I had such an experience about Xolair, but for what light it might shed on ways Xolair can be helpful, on pathologies underlying our diseases. > > Thanks, > > Mark > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 It definitely sounds like me. As per my doctor - she didn't say anything about any kind of tolerance being built up. I'm frustrated because she doesn't seem to want to address the issue. I'll see her next week - hope to get some sort of explanation. My FEV1 2 months ago dropped suddenly to 63% of pred. That was the first drop in the 14 months I had been on it at the time. Up to that point my pulmonology function tests went steadily up (improved). I think she wants me to keep taking it because the med school has close ties to Genentech. However, the new mandate is not worth it - in an infusion center w/cancer patients, 22 miles away, 3 hours there, $45 co-pay. Why do that for something that isn't working? And, a doc who isn't explaining anything? And, possible side effects? I'm curious as to what tests can be done as Genentech told my doc to ignore any IgE tests (i.e., do not run them) for up to 1 year after stopping Xolair. Clearly my breathing took a nosedive plus I'm on and have been on for several weeks, a large number of asthma meds even w/Xolair. I suspect this is more than just a lot of allergens although I don't know. I also developed a UTI for the first time in 30 years - that's one side effect I read somewhere on the boards. The other big complaint for me were the body pains, fatigue, and lethergy. --- In , " Mark Headley " <mjheadley@...> wrote: > > I'd be interested in any accounts of people who, after a period of Xolair administration, have seen the benefits fade as the body/disease adjusts. I'm especially interested in what doctors have said, what testing has indicated, about any instances where there has happened: Any explanations, theories, lack thereof? > > Not because I had such an experience about Xolair, but for what light it might shed on ways Xolair can be helpful, on pathologies underlying our diseases. > > Thanks, > > Mark > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 One of the early side effects for me was the fatigue and my arms ached, but after about the third shot I have had no problems except some minor fatigue the day of the shot. I have had NO UPPER RESPIRATORY INFECTIONS since I have been on xolair, for two and a half years. Before that I had anywhere from two to four a year, depending on the heaviness of certain pollen seasons or mold counts. I can understand your quandry, especially the conditions under which you have to take your shot. I trust things will work out for you and that you can stay on xolair and it will help you. Hope your doctor will listen to you and will have your best interest in mind. Adah From: instdesgn1 <instdesgn1@...> Subject: [ ] Re: tachylaxis w/ Xolair? Date: Wednesday, July 16, 2008, 6:05 PM It definitely sounds like me. As per my doctor - she didn't say anything about any kind of tolerance being built up. I'm frustrated because she doesn't seem to want to address the issue. I'll see her next week - hope to get some sort of explanation. My FEV1 2 months ago dropped suddenly to 63% of pred. That was the first drop in the 14 months I had been on it at the time. Up to that point my pulmonology function tests went steadily up (improved). I think she wants me to keep taking it because the med school has close ties to Genentech. However, the new mandate is not worth it - in an infusion center w/cancer patients, 22 miles away, 3 hours there, $45 co-pay. Why do that for something that isn't working? And, a doc who isn't explaining anything? And, possible side effects? I'm curious as to what tests can be done as Genentech told my doc to ignore any IgE tests (i.e., do not run them) for up to 1 year after stopping Xolair. Clearly my breathing took a nosedive plus I'm on and have been on for several weeks, a large number of asthma meds even w/Xolair. I suspect this is more than just a lot of allergens although I don't know. I also developed a UTI for the first time in 30 years - that's one side effect I read somewhere on the boards. The other big complaint for me were the body pains, fatigue, and lethergy. --- In , " Mark Headley " <mjheadley@. ..> wrote: > > I'd be interested in any accounts of people who, after a period of Xolair administration, have seen the benefits fade as the body/disease adjusts. I'm especially interested in what doctors have said, what testing has indicated, about any instances where there has happened: Any explanations, theories, lack thereof? > > Not because I had such an experience about Xolair, but for what light it might shed on ways Xolair can be helpful, on pathologies underlying our diseases. > > Thanks, > > Mark > > Quote Link to comment Share on other sites More sharing options...
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