Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Anti ige or ige is 5300? Sent from my BlackBerry® smartphone -----Original Message----- From: " christylynnt " <Mom2SethDJLaney@...> Sender: Date: Mon, 29 Nov 2010 21:02:38 < > Reply- Subject: [ ] IGE Antibody levels Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I don't remember what mine were at the time of starting Xolair 5 years ago, but they were way, way higher than the little Xolair charts had. I think they were in the 4,000 range then, but not positive. On Nov 29, 2010, at 4:02 PM, christylynnt wrote: > Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! > > Christy > > Janet Boss Best Friends Dog Obedience Baltimore/Ellicott City/Frederick MD, US Trainer/Instructor/Consultant Member; IACP #2574 Visit our website! www.bestfriendsdogobedience.com Contact me: janet@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 On Nov 29, 2010, at 4:02 PM, christylynnt wrote: > he really doesn't even qualify for the shots because her IGE Antibody Level was far too great, Here are the charts. I was in the " do not dose " area. I have been getting the maximum every 2 weeks for over 5 years and it has made a world of difference in my health. http://www.xolair.com/prescribing_information.html Janet Boss Best Friends Dog Obedience Baltimore/Ellicott City/Frederick MD, US Trainer/Instructor/Consultant Member; IACP #2574 Visit our website! www.bestfriendsdogobedience.com Contact me: janet@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I got approved at 3,000. Meri ________________________________ From: christylynnt <Mom2SethDJLaney@...> Sent: Mon, November 29, 2010 1:02:38 PM Subject: [ ] IGE Antibody levels Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 YES!!! My Allergist, who is also a Xolair Physician speaker and has participated in TONS of Xolair studies , has numerous patients who have IgE levels in the thens of thousands!!!! Send me an out of group email and I can send you his info. He may be able to suggest what to do. Does your Daughter happen have Hyper IgE Syndrome, too? ________________________________ From: christylynnt <Mom2SethDJLaney@...> Sent: Mon, November 29, 2010 4:02:38 PM Subject: [ ] IGE Antibody levels Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Once again, I am thankful to have lots of help with my questions. Thank you all for taking the time. This is where we stand... Last week, she saw a Speech Therapist who evaluated her for Vocal Cord Dysfunction, for which she will receive treatment for the next several weeks. She also has a CT Scan of her sinuses, where we discovered that her sinuses are 80% blocked on both sides. The allergist believes that the ENT will probably want to consider surgery for her. He also thinks that fixing any issues with her sinuses will reduce the issues she has with her asthma. Lastly, she had the bloodwork which determined that her egg, peanut and tree nut allergy are still severe, but her shellfish has gone down. Most importantly. he said her IGE level was 5,361, which means she is super-allergic and that Xolair would most likely not be effective enough to warrant putting her through the shots. I must admit, I was all ready to go forth with it, and then I took her for the bloodwork. She panicked so much that it took three of us to hold her down, and she had an asthma attack because she was so worked up. I do not have the paperwork in front of me, and all the information I have thus far was left on a voice mail. I plan to get in to see him and get copies of the information this week. I wasn't thrilled about her having the Xolair but was beginning to be convinced that it might be the right thing for her. However, it is a little disheartening to think that it might not even be an option available to us anymore. In the meantime, we will continue to pursue the sinus issues, and hopefully keep her healthy enough to begin allergy injections again. Thanks again for all your help! > > YES!!! My Allergist, who is also a Xolair Physician speaker and has > participated in TONS of Xolair studies , has numerous patients who have IgE > levels in the thens of thousands!!!! Send me an out of group email and I can > send you his info. He may be able to suggest what to do. > > Does your Daughter happen have Hyper IgE Syndrome, too? > > > > ________________________________ > From: christylynnt <Mom2SethDJLaney@...> > > Sent: Mon, November 29, 2010 4:02:38 PM > Subject: [ ] IGE Antibody levels > > > Okay, so after everyone's good advice, we finally decided to go ahead and start > our 9 year old on the shots. She had the bloodwork done and I received a call > from her doctor today telling me that she really doesn't even qualify for the > shots because her IGE Antibody Level was far too great, and the shots wouldn't > even be able to help her. Has anyone ever had an experience like this? I'm > curious about what other people's numbers look like. My daughter's are over > 5,300. My understanding is that normal range is 0-100. Help please! > > Christy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 I hate to say this, but xolair may just be the answer. With an ige like that, xolair wopuld be tremendously helpful. It would bind to the ige and hopefully offer her relief. I would strongly recommend a second opinion on xolair. The ige is wreacking havoc on her body. Best S Sent from my BlackBerry® smartphone -----Original Message----- From: " christylynnt " <Mom2SethDJLaney@...> Sender: Date: Tue, 30 Nov 2010 02:14:44 < > Reply- Subject: [ ] Re: IGE Antibody levels Once again, I am thankful to have lots of help with my questions. Thank you all for taking the time. This is where we stand... Last week, she saw a Speech Therapist who evaluated her for Vocal Cord Dysfunction, for which she will receive treatment for the next several weeks. She also has a CT Scan of her sinuses, where we discovered that her sinuses are 80% blocked on both sides. The allergist believes that the ENT will probably want to consider surgery for her. He also thinks that fixing any issues with her sinuses will reduce the issues she has with her asthma. Lastly, she had the bloodwork which determined that her egg, peanut and tree nut allergy are still severe, but her shellfish has gone down. Most importantly. he said her IGE level was 5,361, which means she is super-allergic and that Xolair would most likely not be effective enough to warrant putting her through the shots. I must admit, I was all ready to go forth with it, and then I took her for the bloodwork. She panicked so much that it took three of us to hold her down, and she had an asthma attack because she was so worked up. I do not have the paperwork in front of me, and all the information I have thus far was left on a voice mail. I plan to get in to see him and get copies of the information this week. I wasn't thrilled about her having the Xolair but was beginning to be convinced that it might be the right thing for her. However, it is a little disheartening to think that it might not even be an option available to us anymore. In the meantime, we will continue to pursue the sinus issues, and hopefully keep her healthy enough to begin allergy injections again. Thanks again for all your help! > > YES!!! My Allergist, who is also a Xolair Physician speaker and has > participated in TONS of Xolair studies , has numerous patients who have IgE > levels in the thens of thousands!!!! Send me an out of group email and I can > send you his info. He may be able to suggest what to do. > > Does your Daughter happen have Hyper IgE Syndrome, too? > > > >________________________________ > From: christylynnt <Mom2SethDJLaney@...> > > Sent: Mon, November 29, 2010 4:02:38 PM > Subject: [ ] IGE Antibody levels > > > Okay, so after everyone's good advice, we finally decided to go ahead and start > our 9 year old on the shots. She had the bloodwork done and I received a call > from her doctor today telling me that she really doesn't even qualify for the > shots because her IGE Antibody Level was far too great, and the shots wouldn't > even be able to help her. Has anyone ever had an experience like this? I'm > curious about what other people's numbers look like. My daughter's are over > 5,300. My understanding is that normal range is 0-100. Help please! > > Christy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 While others here are offering opinions based on their positive experience with Xolair, the clinical trials and clinical outcomes show that Xolair works best on those with Ige levels within a specific range. Its a fact. However, my Ige levels were way above the range (9000) and I have done extremely well....basically I'm alive because of it. I truly believe the outcomes should be revisited On Mon Nov 29th, 2010 9:45 PM EST sheilabiss@... wrote: >I hate to say this, but xolair may just be the answer. With an ige like that, xolair wopuld be tremendously helpful. It would bind to the ige and hopefully offer her relief. I would strongly recommend a second opinion on xolair. The ige is wreacking havoc on her body. >Best >S >Sent from my BlackBerry® smartphone > >-----Original Message----- >From: " christylynnt " <Mom2SethDJLaney@...> >Sender: >Date: Tue, 30 Nov 2010 02:14:44 >< > >Reply- >Subject: [ ] Re: IGE Antibody levels > >Once again, I am thankful to have lots of help with my questions. Thank you all for taking the time. > >This is where we stand... Last week, she saw a Speech Therapist who evaluated her for Vocal Cord Dysfunction, for which she will receive treatment for the next several weeks. She also has a CT Scan of her sinuses, where we discovered that her sinuses are 80% blocked on both sides. The allergist believes that the ENT will probably want to consider surgery for her. He also thinks that fixing any issues with her sinuses will reduce the issues she has with her asthma. Lastly, she had the bloodwork which determined that her egg, peanut and tree nut allergy are still severe, but her shellfish has gone down. Most importantly. he said her IGE level was 5,361, which means she is super-allergic and that Xolair would most likely not be effective enough to warrant putting her through the shots. I must admit, I was all ready to go forth with it, and then I took her for the bloodwork. She panicked so much that it took three of us to hold her down, and she had an asthma attack because she was so worked up. > >I do not have the paperwork in front of me, and all the information I have thus far was left on a voice mail. I plan to get in to see him and get copies of the information this week. > >I wasn't thrilled about her having the Xolair but was beginning to be convinced that it might be the right thing for her. However, it is a little disheartening to think that it might not even be an option available to us anymore. In the meantime, we will continue to pursue the sinus issues, and hopefully keep her healthy enough to begin allergy injections again. > >Thanks again for all your help! > > >> >> YES!!! My Allergist, who is also a Xolair Physician speaker and has >> participated in TONS of Xolair studies , has numerous patients who have IgE >> levels in the thens of thousands!!!! Send me an out of group email and I can >> send you his info. He may be able to suggest what to do. >> >> Does your Daughter happen have Hyper IgE Syndrome, too? >> >> >> >>________________________________ >> From: christylynnt <Mom2SethDJLaney@...> >> >> Sent: Mon, November 29, 2010 4:02:38 PM >> Subject: [ ] IGE Antibody levels >> >> >> Okay, so after everyone's good advice, we finally decided to go ahead and start >> our 9 year old on the shots. She had the bloodwork done and I received a call >> from her doctor today telling me that she really doesn't even qualify for the >> shots because her IGE Antibody Level was far too great, and the shots wouldn't >> even be able to help her. Has anyone ever had an experience like this? I'm >> curious about what other people's numbers look like. My daughter's are over >> 5,300. My understanding is that normal range is 0-100. Help please! >> >> Christy >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 We've had a number of folks post to this board whose IgE levels are outside the therapeutic range and who have benefitted from Xolair. Your doctor can call the Xolair rep who can put him/her in touch with the folks at National Jewish or any other major research hospital using Xolair. As Mark indicated in his post, they really need to update the outcomes information that's available. A related question to ask would be " how long does it typically take patients with IgE scores well above the range to see measurable benefits from Xolair? " It may take longer than normal, I don't know. Best of luck to you and your daughter! Addy Group Co-owner > > Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! > > Christy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2010 Report Share Posted December 1, 2010 The other posters have good points that I support: 1. Many people with astronomical IGE's have benefited from Xolair 2. Check with the maker of Xolair to see about getting support for your case and/or see a different doctor. My IgE was 415 pre Xolair and in combination with my weight (200ish +) I was in the " do not treat zone. " I was definitely treated anyway and it did help the asthma but most of all it helped those horrible sinus headaches that wipe me out otherwise. The chronic painful sinusitis turns my mind to oatmeal (or something like that). It took longer for Xolair to help with the sinus (about 8 months) but it was the best part! Perhaps the chronic breathing difficulty including the severe sinusitis is contributing to your daughters' fears. Certainly it does affect my personality. An ENT suggested surgery several years ago but when I pushed him, he admitted it was not necessary. I do not have polyps or a significant deviation. Indeed, I find it hard to believe that sinus surgery does much of anything good to anyone as allergic as myself. Surgery is dangerous and so close to the brain is even more dangerous .... The allergies will remain intact. Since I'm no longer on Xolair for political reasons, I AM on as much as 300 mgs. a day of pseudoephedrine and a 1200 mgs of guifenesin among a lot of other meds. Still I'm often dysfunctional - for example, my new glasses reeked of plastic (to me) and gave me disabling headaches. Now then, while I was ON Xolair my IgE went to OVER 1300 but that includes both bound and unbound. The allergies were better. > > Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! > > Christy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2010 Report Share Posted December 1, 2010 I have an IgE in the thousands and had constant sinusitis which made my asthma bad and caused me to lose my sense of smell I suffered for 2 years but just had Sinus surgery and it helped tremendously. I was lucky to have one of the best sinus dogs in the country do my surgery and even though the surgery lasted almost 4 hours it was a very easy recovery. I am sooooo glad I did it and wonder why I waited my doc expects my IgE to come down now that all that trapped infection is out of my head. Meri On Nov 30, 2010, at 6:26 PM, " instdesgn1 " <instdesgn1@...> wrote: > The other posters have good points that I support: > > 1. Many people with astronomical IGE's have benefited from Xolair > 2. Check with the maker of Xolair to see about getting support for your case and/or see a different doctor. > > My IgE was 415 pre Xolair and in combination with my weight (200ish +) I was in the " do not treat zone. " I was definitely treated anyway and it did help the asthma but most of all it helped those horrible sinus headaches that wipe me out otherwise. The chronic painful sinusitis turns my mind to oatmeal (or something like that). It took longer for Xolair to help with the sinus (about 8 months) but it was the best part! > > Perhaps the chronic breathing difficulty including the severe sinusitis is contributing to your daughters' fears. Certainly it does affect my personality. > > An ENT suggested surgery several years ago but when I pushed him, he admitted it was not necessary. I do not have polyps or a significant deviation. Indeed, I find it hard to believe that sinus surgery does much of anything good to anyone as allergic as myself. Surgery is dangerous and so close to the brain is even more dangerous .... The allergies will remain intact. Since I'm no longer on Xolair for political reasons, I AM on as much as 300 mgs. a day of pseudoephedrine and a 1200 mgs of guifenesin among a lot of other meds. Still I'm often dysfunctional - for example, my new glasses reeked of plastic (to me) and gave me disabling headaches. > > Now then, while I was ON Xolair my IgE went to OVER 1300 but that includes both bound and unbound. The allergies were better. > > --- In , " christylynnt " <Mom2SethDJLaney@...> wrote: > > > > Okay, so after everyone's good advice, we finally decided to go ahead and start our 9 year old on the shots. She had the bloodwork done and I received a call from her doctor today telling me that she really doesn't even qualify for the shots because her IGE Antibody Level was far too great, and the shots wouldn't even be able to help her. Has anyone ever had an experience like this? I'm curious about what other people's numbers look like. My daughter's are over 5,300. My understanding is that normal range is 0-100. Help please! > > > > Christy > > > > Quote Link to comment Share on other sites More sharing options...
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