Guest guest Posted December 13, 2005 Report Share Posted December 13, 2005 Hi Edgar, My IgE was similar to yours when I first had it tested. In fact, it was so high that blue cross tried to say it was out of the tested range to benefit from the drug. But when I had my IgE retested during a less allergic month, it was in the 600s. Apparently, there can be a huge amount of variability within an individual, depending on seasonal and other triggers. I am on the highest dose, 375 mg every two weeks. I've spoken with a nurse at Novafactor, who informs me that many patients have IgE levels over 1000 and have done just fine with Xolair. Best, Meryl Hi folks, Since recently Xolair has been approved in Europe and I'm so glad that now I can try it out myself. The downside is that my docter had my blood checked and saw that my IgE level is 1100 (yes eleven hundred!!!). There is no dosage indication at this level at all. Is there anyone who has this sort of high IgE out here? Can you please tell me about your experience and the dosage you get. My body weight is 73 kilo's (don't know punds). I'm so shocked at such high IgE counts. Somehow I always thought that others where worse of and that my case wasn't that bad. Eventhough I had pains all over my body and felt like misarable all the time. Now I just see the hard proof that I'm really a bad case of allergy. So anyone out there with this sort of high count? Regards, Edgar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2005 Report Share Posted December 13, 2005 Your case sounds very similar to mine. My IgE level is 1190, I weigh 90 kilos (200 LBS), I get 375 mg every two weeks (3 shots), the dose is by weight and IgE level. I have been told they only tested up to 750 IgE, insurance companies will use that to try to deny a patient, do not let them, it is Xolair's original testing criteria only. I have done much better on Xolair, have been on it for 9 months and it is starting to work better now. Some notice the difference right away, some it takes a year. I think you will be pleased with the results, you have to hang in there. Ron On Dec 13, 2005, at 6:37 AM, biervlietkramp wrote: > Hi folks, > > Since recently Xolair has been approved in Europe and I'm so glad that > now I can try it out myself. The downside is that my docter had my > blood checked and saw that my IgE level is 1100 (yes eleven > hundred!!!). There is no dosage indication at this level at all. Is > there anyone who has this sort of high IgE out here? > Can you please tell me about your experience and the dosage you get. > My body weight is 73 kilo's (don't know punds). > I'm so shocked at such high IgE counts. Somehow I always thought that > others where worse of and that my case wasn't that bad. Eventhough I > had pains all over my body and felt like misarable all the time. Now I > just see the hard proof that I'm really a bad case of allergy. > So anyone out there with this sort of high count? > > Regards, > > Edgar > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2005 Report Share Posted December 13, 2005 I have children with 7000 and 9000 IgE levels that are doing wonderfully on 375mg every 2 weeks. IgE level was a requirement in the testing of Xolair. Insurance companies want it to be within the range Genentech tested Xolair. All help to block the IgE from starting the allergy cascade is good. It takes longer for some than others. Only theories are out there about why that is so. So, all, please don't get stuck on an IgE level to tell you how relatively " sick " or " well " you are. Xolair works. Just give it time to do so. Pat --------------------------------- Find Great Deals on Holiday Gifts at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Hi folks, Thank you for your kind replies on my request. Levels of 7000 and more??? Wow! Can anyone tell me how much 375 per two weeks will cost. I know that one injection costs about 500 dollar. But is that a 75 or a 150 injection? There is just no way that my insurance will pay. In Europe xolair has only been approved for very severe asthma. One has to have been taken ill into hospital several times etc... Luckily I don't have it that bad...but since I don't have such a history the insurance will most certainly not pay. So I like to have an idea of what it will cost, so I can brace for the impact. Regards, Edgar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Edgar Have your physician use a specialty pharmacy. Each has a nurse who can help with a leter of medical necessity to help twist the arm of the insurance company. If they say " no " the 3rd time, then ask for a cash discount at the pharmacy. My pharmacy gives it, I'm sure they all do. 150mg of Xolair is about $500. The dose of 375 is 3 vials and you have to pay for hte whole vial even if you use only half the 3rd vial for the dose. Stinks, I know, but Genentech doesn't make a 75mg vial yet. Pat --------------------------------- Find Great Deals on Holiday Gifts at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 Dear Pat, Thank you so much for your advise. I'll try just that. Kind regards, Edgar > > Edgar > > Have your physician use a specialty pharmacy. Each has a nurse who can help with a leter of medical necessity to help twist the arm of the insurance company. If they say " no " the 3rd time, then ask for a cash discount at the pharmacy. My pharmacy gives it, I'm sure they all do. 150mg of Xolair is about $500. The dose of 375 is 3 vials and you have to pay for hte whole vial even if you use only half the 3rd vial for the dose. Stinks, I know, but Genentech doesn't make a 75mg vial yet. > > Pat > > > --------------------------------- > > Find Great Deals on Holiday Gifts at > > Quote Link to comment Share on other sites More sharing options...
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