Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Doug, et al: I neglected to mention in my initial mail that I do carry an epi-pen. My allergist began to require this of all her severe asthma patients getting vaccines. So your point about anaphylactic reactions to allergy shots is well taken. I have never had a reaction. You raised an interesting question for me to ask my doctor. I want to know how many patients she has using Xolair, and what the results have been so far. I will do that when I call her. I need to call her -- I'm afraid inhalers aren't helping me much right now. The evil candy is what I need right now, in the absence of Xolair. Given your input, and that of others on the website, I'm leaning toward taking the drug now. But I would prefer to just get it, covered by insurance, than participate in a study and risk getting the placebo. Thanks! Cheers, Lin -- In , " uca79iii " <bme1979@...> wrote: > > --- In , " linmill225 " <linmill225@> wrote: > > > > Greetings. I am brand new to this group. My allergist yesterday > > recommended that I participate in a new Xolair research study. It > > focuses on whether the drug allows Advair 500mg patients, such as > > myself, to stop using steroid inhalants. > > > > I have tremendous respect for my allergist. She is connected with > > s Hopkins Medical Center, and was the first one who diagnosed and > > properly treated my lifelong asthma (which had been repeatedly > > misdiagnosed, from infancy, as chronic bronchitis). > > > > But I am leery of the newness of this drug, along with the > > anaphylactic and cancer cases that have prompted the FDA black box > > warnings. > > > > My allergist gave me a detailed analysis of the research on those > > problems so far. She thinks both side effects have been exaggerated. > > She said two-thirds of the cancer cases appeared to be pre- existing > > conditions in Xolair patients. > > > > Where are the best sources of information online about ongoing, > > objective research results on Xolair? I want to make as informed a > > decision as I can, and wouldn't dare trust the pharmaceutical > > companies' brochures. > > > > Also, it sounds like many of those participating in this group have > > more severe asthma than I do. Mine is under control most of the year, > > except for the fall, when my system is always overwhelmed by molds. I > > currently take Advair, Singulair, and use a MaxAir inhaler a couple > > of times a day during the fall season. I often end up on short, > > intense does of Prednisone in the fall, when the congestion causes > > severe asthma, bronchitis and/or sinus infections. > > > > By contrast, many of you sound like you've been living on Prednisone > > (I love that " evil candy " nickname)on a regular basis. I've been on > > Prednisone frequently over the past 10 years, but only during certain > > high pollen periods (fall, and sometimes the spring). > > > > I can see wanting to get off the evil candy, if you've been forced to > > take it regularly. I can't sleep on the stuff! But I usually am cured > > with one or two 60mg tapers of prednisone. I've never had to take it > > for months or years at a time. > > > > My question is: Do I have severe enough asthma to warrant > > participating in this Xolair trial? I also risk getting the placebo, > > which would be good for science, but not for me. > > cheers, Lin > > > > > Welcome Lin, > > You have found the right place for friendship and support. I am going > through the same thing right now for another ailment. My doctor is > encouraging me to do the study but I am still debating if I should be > a part of it or not. Note: I am not mentioning this ailment because > this is a Xolair/Asthma group. If anyone would like to know, please > email me. > > These would be the initial trials so I would be one of the first to > try it out and that concerns me greatly. So far, there is nothing on > the web about these trials. I have a choice of going through them to > get relief or having painful surgery. > > I agree with your doctor. I personally believe that all this reaction > stuff is just a bunch of hype. As for the cancer, I was told by > several medical professionals that everyone that came out of the > xolair trials had to report ALL ailments they had afterwards. The > people with cancer ALREADY WERE DEVELOPING IT before they started > Xolair but it still HAD to be reported. > > I am NOT a doctor, just a severe asthmatic on my 5th year of Xolair. > Here is my personal opinion: > > If reactions are a serious concern then, why aren't we required to > have epi pens and wait 2 hours after a regular allergy or penecillin > shot? These have caused FAR more reactions than xolair in the past 4 > years since xolair came out on the market. > > I had a BAD reaction as a kid to a regular allergy shot. Why am I not > required to bring my epi pen to that injection? > > My doctor's office has 15 xolair patients. NONE of us have had any > reactions whatsoever but in the same period of time, they have had at > least 25 reactions to regular allergy shots. > > Here is my advice as another patient: Trust your doctor. It is your > right to get 2nd opinion. It's your health and you need as much info > as you can before you take a trial plunge. > > As for me, I am going to call another doctor and get another opinion > about my other illness. I don't want surgery but I also want some > relief from this condition. > > Once again WELCOME ))) > > Doug > Group founder > Started 5th year of Xoliar > treatment last month ) > Quote Link to comment Share on other sites More sharing options...
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