Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 " Ticked off " said their IgE was through the roof. May I ask Ticked Off, how high was it? And, has Xolair brought down your IgE level? If yes, by how much? I have record high IgE levels, severe eczema, and asthma, and have had no luck convincing my dermatologist to start me on Xolair. I guess because it's approved for asthma, however, several reports on this post include skin improvement for eczema sufferers. Therefore, I'd like to be armed with a little bit of IgE info. before I visit my pulmonologist. Thanks... Marie ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Marie, while waiting for your reply from Ticked Off, I'll mention that my IGE levels hit at 330 (whatever the units are I don't know) and my doctor said 3 was typical and 30 was high. I get the max dose of two injections in each arm every two weeks and I still got my head handed to me when the pollen count went to very high a week and a half ago. Sent me scurrying for a coarse of Prednisone. A level of 330 puts me borderline off the charts for Xolair. From what I understand, Xolair doesn't reduce your IGE levels, it just inactivates your IGE. Quality of life has been better since I went on Xolair last summer, but it hasn't been a cure-all. Nothing has. With a suit of meds that include Xolair, Advair, Nasonex, Zyrtec, Spiriva and Uniphyl and Albuterol on the side, I have some days that I feel just great and my breathing is superb and beyond. Most days I feel just normal, which is really good for me. Then every few months it seems, for one reason or another, asthma kicks my butt and I have to reach for the evil cure-all ... Prednisone. So I generally maintain a reasonable level of health. Xolair is part of the wellness package. No ER visits for me! But I'll probably be dead on the street before going to the hospital because I can't stand that place. If you have allergy-triggered asthma (likely if you have high IGE levels) I strongly encourage you to go to a highly recognized allergist. I doubt that dermitologist (skin docs) are experts in lung disease and as I understand it, pulmos are who you see for the end stage of the disease, not the docs you want to see to keep you from sliding into the end stage arena. Good luck, Marie, and I wish you health and happiness. > > " Ticked off " said their IgE was through the roof. May I ask Ticked Off, how > high was it? And, has Xolair brought down your IgE level? If yes, by how > much? I have record high IgE levels, severe eczema, and asthma, and have had no > luck convincing my dermatologist to start me on Xolair. I guess because it's > approved for asthma, however, several reports on this post include skin > improvement for eczema sufferers. Therefore, I'd like to be armed with a little > bit of IgE info. before I visit my pulmonologist. > > Thanks... > Marie > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 just a tidbit of info for you --- once you start on xolair, if you have your IgE tested via blood test, it will actually look as if it has INCREASED! that's not to say that you're now " more allergic " , its just that the test cannot differentiate between the bound (xolair affected IgE) and the unbound IgE. my pre-xolair IgE was 730-something....after a year of xolair, my dr threw an IgE in with other bloodwork for fun...it was over 1600 - which we knew is not accurate. possibly you can have your pulmo write the rationale for xolair. before i started on xolair (for my asthma) my ENT wanted to submit a rationale for my sinus issues. before he could get that going, my allergist/asthma specialist jumped on the xolair train...(he got another patient on it who has only mild asthma, but severe allergic sinus disease). xolair definately helped my severe eczema...of course, its still almost always present and i still have flares, but its better. unfortunately, we're running out of topical creams to use!! hope your able to try xolair and it provides some relief. heather heather > > " Ticked off " said their IgE was through the roof. May I ask Ticked Off, how > high was it? And, has Xolair brought down your IgE level? If yes, by how > much? I have record high IgE levels, severe eczema, and asthma, and have had no > luck convincing my dermatologist to start me on Xolair. I guess because it's > approved for asthma, however, several reports on this post include skin > improvement for eczema sufferers. Therefore, I'd like to be armed with a little > bit of IgE info. before I visit my pulmonologist. > > Thanks... > Marie > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 In a message dated 4/7/2007 8:31:12 A.M. Eastern Daylight Time, mister_manganese@... writes: Marie, while waiting for your reply from Ticked Off, I'll mention that my IGE levels hit at 330 (whatever the units are I don't know) and my doctor said 3 was typical and 30 was high. I get the max dose of two injections in each arm every two weeks and I still got my head handed to me when the pollen count went to very high a week and a half ago. Sent me scurrying for a coarse of Prednisone. A level of 330 puts me borderline off the charts for Xolair. From what I understand, Xolair doesn't reduce your IGE levels, it just inactivates your IGE. Quality of life has been better since I went on Xolair last summer, but it hasn't been a cure-all. Nothing has. With a suit of meds that include Xolair, Advair, Nasonex, Zyrtec, Spiriva and Uniphyl and Albuterol on the side, I have some days that I feel just great and my breathing is superb and beyond. Most days I feel just normal, which is really good for me. Then every few months it seems, for one reason or another, asthma kicks my butt and I have to reach for the evil cure-all ... Prednisone. So I generally maintain a reasonable level of health. Xolair is part of the wellness package. No ER visits for me! But I'll probably be dead on the street before going to the hospital because I can't stand that place. If you have allergy-triggered asthma (likely if you have high IGE levels) I strongly encourage you to go to a highly recognized allergist. I doubt that dermitologist (skin docs) are experts in lung disease and as I understand it, pulmos are who you see for the end stage of the disease, not the docs you want to see to keep you from sliding into the end stage arena. Good luck, Marie, and I wish you health and happiness. Thank you to Mister Manganese & for your replies and good wishes. I do have an allergist who specializes in asthma, but it's been so difficult getting an appointment because he is heavily involved in research most of the time: I guess that's good! Anyhow, it's worth the wait. I guess I'm a little afraid my IgE levels will preclude me from trying Xoliar, but hey, might as well give it a shot (pun intended). My IgE level has maxed out at 45,000, now is 20,000, and the lowest it's been in a few years has been 10,000. The first time I saw my allergist, it was during the 10,000 mark, and he said he'd never seen an IgE level that high. Wait until I show him the others. Again, that's for sharing your experiences; it certainly is helpful. Regards to all members, Marie P.S. Getting off 40mg. Pred. daily, back on Cyclosporine 300 mg. daily. Need my second hip replacement since Pred. damaged both a couple of years ago. Like many on this site, I've been on dozens of meds., including self-injecting Intron for suspicion of lymphoma (was neg!), sooo many tests, including bone marrow biopsy, fine needle aspirations of underarm lymph nodes, kidney ultrasounds, etc., etc. So we're all one heck of a group:-) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 To answer the question about IgE levels after Xolair treatment - yes they will still be high and possibly even higher than before. It's because the Xolair binds to IgE in the blood in a way that prevents the IgE from binding to mast cells and starting the allergic cascade. But then the Xolair-IgE combo stays in the blood until it is eventually filtered out or broken down. The standard blood tests for IgE level cannot tell the difference between free (unbound to Xolair) IgE and the IgE-Xolair combo and the combo can stay circulating in the blood for quite sometime. If you test for IgE at this point, there can be an accumulation of IgE-Xolair which gets measured as IgE, so the level can be high even though you no longer have much free IgE circulating. Research labs can measure free IgE without including IgE-Xolair complexes but as far as I know, this capability is not yet on the market for physicians to order. Also, about pulmonologists - they do not treat only " end-stage " asthma. They treat the many patients who have asthma that has been diffficult or impossible to control using conventional inhaled bronchodilators and inhaled steroids. Fran > > > In a message dated 4/7/2007 8:31:12 A.M. Eastern Daylight Time, > mister_manganese@... writes: > > Marie, while waiting for your reply from Ticked Off, I'll mention > that my IGE levels hit at 330 (whatever the units are I don't know) > and my doctor said 3 was typical and 30 was high. I get the max > dose of two injections in each arm every two weeks and I still got > my head handed to me when the pollen count went to very high a week > and a half ago. Sent me scurrying for a coarse of Prednisone. > > A level of 330 puts me borderline off the charts for Xolair. > > From what I understand, Xolair doesn't reduce your IGE levels, it > just inactivates your IGE. > > Quality of life has been better since I went on Xolair last summer, > but it hasn't been a cure-all. Nothing has. With a suit of meds > that include Xolair, Advair, Nasonex, Zyrtec, Spiriva and Uniphyl > and Albuterol on the side, I have some days that I feel just great > and my breathing is superb and beyond. Most days I feel just > normal, which is really good for me. Then every few months it > seems, for one reason or another, asthma kicks my butt and I have to > reach for the evil cure-all ... Prednisone. > > So I generally maintain a reasonable level of health. Xolair is > part of the wellness package. No ER visits for me! But I'll > probably be dead on the street before going to the hospital because > I can't stand that place. > > If you have allergy-triggered asthma (likely if you have high IGE > levels) I strongly encourage you to go to a highly recognized > allergist. I doubt that dermitologist (skin docs) are experts in > lung disease and as I understand it, pulmos are who you see for the > end stage of the disease, not the docs you want to see to keep you > from sliding into the end stage arena. > > Good luck, Marie, and I wish you health and happiness. > > > > Thank you to Mister Manganese & for your replies and good wishes. I > do have an allergist who specializes in asthma, but it's been so difficult > getting an appointment because he is heavily involved in research most of the > time: I guess that's good! Anyhow, it's worth the wait. I guess I'm a little > afraid my IgE levels will preclude me from trying Xoliar, but hey, might as > well give it a shot (pun intended). > > My IgE level has maxed out at 45,000, now is 20,000, and the lowest it's > been in a few years has been 10,000. The first time I saw my allergist, it was > during the 10,000 mark, and he said he'd never seen an IgE level that high. > Wait until I show him the others. Again, that's for sharing your experiences; > it certainly is helpful. > > Regards to all members, > Marie > > P.S. Getting off 40mg. Pred. daily, back on Cyclosporine 300 mg. daily. Need > my second hip replacement since Pred. damaged both a couple of years ago. > Like many on this site, I've been on dozens of meds., including self-injecting > Intron for suspicion of lymphoma (was neg!), sooo many tests, including bone > marrow biopsy, fine needle aspirations of underarm lymph nodes, kidney > ultrasounds, etc., etc. So we're all one heck of a group:-) > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 Thanks for explaining that better Fran. I tried to do that earlier but I sort of fudged it! If I remember correctly,the FDA had said that 750 is the highest IgE level that one should have before taking Xolair. BUT I know of a pulmo who give it to patients who had levels over that before they started taking Xolair. It is working VERY WELL for them. --- tiredofsteroids <sitesee@...> wrote: > To answer the question about IgE levels after Xolair > treatment - yes > they will still be high and possibly even higher > than before. It's > because the Xolair binds to IgE in the blood in a > way that prevents > the IgE from binding to mast cells and starting the > allergic cascade. > But then the Xolair-IgE combo stays in the blood > until it is > eventually filtered out or broken down. The standard > blood tests for > IgE level cannot tell the difference between free > (unbound to Xolair) > IgE and the IgE-Xolair combo and the combo can stay > circulating in > the blood for quite sometime. If you test for IgE at > this point, > there can be an accumulation of IgE-Xolair which > gets measured as > IgE, so the level can be high even though you no > longer have much > free IgE circulating. > > Research labs can measure free IgE without including > IgE-Xolair > complexes but as far as I know, this capability is > not yet on the > market for physicians to order. > > Also, about pulmonologists - they do not treat only > " end-stage " > asthma. They treat the many patients who have asthma > that has been > diffficult or impossible to control using > conventional inhaled > bronchodilators and inhaled steroids. > > Fran > > > > > > > > > In a message dated 4/7/2007 8:31:12 A.M. Eastern > Daylight Time, > > mister_manganese@... writes: > > > > Marie, while waiting for your reply from Ticked > Off, I'll mention > > that my IGE levels hit at 330 (whatever the units > are I don't > know) > > and my doctor said 3 was typical and 30 was high. > I get the max > > dose of two injections in each arm every two > weeks and I still got > > my head handed to me when the pollen count went > to very high a > week > > and a half ago. Sent me scurrying for a coarse of > Prednisone. > > > > A level of 330 puts me borderline off the charts > for Xolair. > > > > From what I understand, Xolair doesn't reduce your > IGE levels, it > > just inactivates your IGE. > > > > Quality of life has been better since I went on > Xolair last > summer, > > but it hasn't been a cure-all. Nothing has. With > a suit of meds > > that include Xolair, Advair, Nasonex, Zyrtec, > Spiriva and Uniphyl > > and Albuterol on the side, I have some days that > I feel just great > > and my breathing is superb and beyond. Most days I > feel just > > normal, which is really good for me. Then every > few months it > > seems, for one reason or another, asthma kicks my > butt and I have > to > > reach for the evil cure-all ... Prednisone. > > > > So I generally maintain a reasonable level of > health. Xolair is > > part of the wellness package. No ER visits for > me! But I'll > > probably be dead on the street before going to > the hospital > because > > I can't stand that place. > > > > If you have allergy-triggered asthma (likely if > you have high IGE > > levels) I strongly encourage you to go to a > highly recognized > > allergist. I doubt that dermitologist (skin docs) > are experts in > > lung disease and as I understand it, pulmos are > who you see for > the > > end stage of the disease, not the docs you want > to see to keep you > > from sliding into the end stage arena. > > > > Good luck, Marie, and I wish you health and > happiness. > > > > > > > > Thank you to Mister Manganese & for your > replies and good > wishes. I > > do have an allergist who specializes in asthma, > but it's been so > difficult > > getting an appointment because he is heavily > involved in research > most of the > > time: I guess that's good! Anyhow, it's worth the > wait. I guess I'm > a little > > afraid my IgE levels will preclude me from trying > Xoliar, but hey, > might as > > well give it a shot (pun intended). > > > > My IgE level has maxed out at 45,000, now is > 20,000, and the > lowest it's > > been in a few years has been 10,000. The first > time I saw my > allergist, it was > > during the 10,000 mark, and he said he'd never > seen an IgE level > that high. > > Wait until I show him the others. Again, that's > for sharing your > experiences; > > it certainly is helpful. > > > > Regards to all members, > > Marie > > > > P.S. Getting off 40mg. Pred. daily, back on > Cyclosporine 300 mg. > daily. Need > > my second hip replacement since Pred. damaged both > a couple of > years ago. > > Like many on this site, I've been on dozens of > meds., including > self-injecting > > Intron for suspicion of lymphoma (was neg!), sooo > many tests, > including bone > > marrow biopsy, fine needle aspirations of underarm > lymph nodes, > kidney > > ultrasounds, etc., etc. So we're all one heck of a > group:-) > > > > > > > > ************************************** See what's > free at > http://www.aol.com. > > > > > > [Non-text portions of this message have been > removed] > > > > > ________________________________________________________________________________\ ____ The fish are biting. Get more visitors on your site using Search Marketing. http://searchmarketing./arp/sponsoredsearch_v2.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2007 Report Share Posted April 10, 2007 I read where having parasites can run your IGE levels way up so you may want to ask your Doc if this a possiblity, especially if you've hung out in areas with poor sanitation. > > " Ticked off " said their IgE was through the roof. May I ask Ticked Off, how > high was it? And, has Xolair brought down your IgE level? If yes, by how > much? I have record high IgE levels, severe eczema, and asthma, and have had no > luck convincing my dermatologist to start me on Xolair. I guess because it's > approved for asthma, however, several reports on this post include skin > improvement for eczema sufferers. Therefore, I'd like to be armed with a little > bit of IgE info. before I visit my pulmonologist. > > Thanks... > Marie > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2007 Report Share Posted April 10, 2007 > > > > " Ticked off " said their IgE was through the roof. May I ask Ticked > Off, how > > high was it? And, has Xolair brought down your IgE level? If yes, > by how > > much? I have record high IgE levels, severe eczema, and asthma, > and have had no > > luck convincing my dermatologist to start me on Xolair. I guess > because it's > > approved for asthma, however, several reports on this post include > skin > > improvement for eczema sufferers. Therefore, I'd like to be armed > with a little > > bit of IgE info. before I visit my pulmonologist. > > > > Thanks... > > Marie > > > > > > > > ************************************** See what's free at > http://www.aol.com. > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.