Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 I would talk to your doc. It may be time for you to go to 150/150. It may very well be that you have developed some new allergies and are manufacturing some add'l IgE. No, I don't like the thought of that either, especially since I get 375mg every two weeks as it is. It's not like there's a whole lot more that I can do. Good luck. Let us know what the doc says. Remind him that he can call HIS Xolair rep if he has questions. You might also call your specialty pharmacy and ask to speak to the pharmacist on duty to ask questions. Since the specialty pharmacy provides it to the docs, they may be seeing docs increasing dosages in some cases and may have more info to share than a single doc or practice has. Just a thought. Addy Group co-owner > > I've been doing loads and loads of research but I can't find anything that even suggests Xolair can stop working once a person begins to see benefits. Unfortunately, that seems to be the case for me. I've been getting 150/75, alternating every two weeks for about 2 years and for about 1 1/2 years I felt pretty close to being cured. Recently, the shots just haven't been working as well. I thought it was because of the brutal summer we had but that weather system is long gone. The weather is beautiful now. > > Nowadays, my shots seem to be effective for 5 days, leaving me with 9 days of hell. I can't step foot into my bed without facing the insane itching. Once that starts the mucus production factories begin working over time and the chest tightness sets in. I'm lucky if I get 2 hours of sleep per night. I'm just puzzled how Xolair could work so well for so long and then stop working after 5 days. > > Is my body producing larger amounts of IgE all of a sudden ? My weight hasn't changed. My lifestyle hasn't changed. I'm just puzzled. I guess I'll sleep in the bathtub tonight. I don't think dust mites can leave on cast iron, can they? > > Back to the doc I guess. I'm pretty much ready to throw in the towel and accept my fate. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 , I'm so sorry you're back to having such severe symptoms most of the time. Our IgE levels can certainly change over time even to the same set of allergens and, unfortunateliy, we can develop allergies to new allergens at any time which could increase total IgE levels. Clearly something has changed significantly for you. You're right about needing to get back to your doc. Please let us know what he thinks and what he can do for you - Fran > > I've been doing loads and loads of research but I can't find anything that even suggests Xolair can stop working once a person begins to see benefits. Unfortunately, that seems to be the case for me. I've been getting 150/75, alternating every two weeks for about 2 years and for about 1 1/2 years I felt pretty close to being cured. Recently, the shots just haven't been working as well. I thought it was because of the brutal summer we had but that weather system is long gone. The weather is beautiful now. > > Nowadays, my shots seem to be effective for 5 days, leaving me with 9 days of hell. I can't step foot into my bed without facing the insane itching. Once that starts the mucus production factories begin working over time and the chest tightness sets in. I'm lucky if I get 2 hours of sleep per night. I'm just puzzled how Xolair could work so well for so long and then stop working after 5 days. > > Is my body producing larger amounts of IgE all of a sudden ? My weight hasn't changed. My lifestyle hasn't changed. I'm just puzzled. I guess I'll sleep in the bathtub tonight. I don't think dust mites can leave on cast iron, can they? > > Back to the doc I guess. I'm pretty much ready to throw in the towel and accept my fate. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 I mostly monitor the site now and don't interfere or add my 2 cents in much, but here goes... I explained this to another patient in military terms and he thanked me because he understood easily. Hope it works for you. You have to imagine IgE is a little militia that is very organized and can cause havoc when left run amuck. Xolair is the blocking force that keeps the militia at bay. When Militia men die in the persuit of havoc, they are replaced. Sometimes the replacements are more than the original force. When this happens the Xolair dose doesn't have enough anti-IgE to combat it. The Xolair is still working, just not strong enough. The same applies to bodies. IgE is created by our bodies but the bad part of the IgE set off the cascade of swelling in the airways, runny nose, hives etc...Xolair attaches to the IgE molecule and doesn't allow the allergy cascade to happen. When we are faced with increased allergens or new allergens and on the same dose of Xolair, there isn't enough Xolair to attach to all of the IgE molecules and neuter them. IgE testing is ineffective while on Xolair because the tests do not differentiate between neutered IgE and free floating IgE. So your physician can do extra allergy tests to the elements high on the charts right now or just increase your dose to see how you do. Sometimes allergy tests are not that accurate. It depends on a whole host of factors. My advice is just talk to your practitioner and tell he/she what your symptoms are and that you'd like to try increasing the dose during this season to see if you can keep symptoms at bay. Hope I helped a little. Pat __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 My Doctor has already given me the approval to go up to 150/150 but that concerns me because my original dose was 150 1x per month. I had to be increased from that dose to 150/75 so what happens if I go up to 150/150 and in another year that isn't enough? This is a very difficult decision. If I continue to have difficulty I'm going to go in and see what he says. I'll keep everyone posted if/when that happens. I'll talk to the nurses next week and see if they have any suggestions. pyle456 <coachmac@...> wrote: I would talk to your doc. It may be time for you to go to 150/150. It may very well be that you have developed some new allergies and are manufacturing some add'l IgE. No, I don't like the thought of that either, especially since I get 375mg every two weeks as it is. It's not like there's a whole lot more that I can do. Good luck. Let us know what the doc says. Remind him that he can call HIS Xolair rep if he has questions. You might also call your specialty pharmacy and ask to speak to the pharmacist on duty to ask questions. Since the specialty pharmacy provides it to the docs, they may be seeing docs increasing dosages in some cases and may have more info to share than a single doc or practice has. Just a thought. Addy Group co-owner > > I've been doing loads and loads of research but I can't find anything that even suggests Xolair can stop working once a person begins to see benefits. Unfortunately, that seems to be the case for me. I've been getting 150/75, alternating every two weeks for about 2 years and for about 1 1/2 years I felt pretty close to being cured. Recently, the shots just haven't been working as well. I thought it was because of the brutal summer we had but that weather system is long gone. The weather is beautiful now. > > Nowadays, my shots seem to be effective for 5 days, leaving me with 9 days of hell. I can't step foot into my bed without facing the insane itching. Once that starts the mucus production factories begin working over time and the chest tightness sets in. I'm lucky if I get 2 hours of sleep per night. I'm just puzzled how Xolair could work so well for so long and then stop working after 5 days. > > Is my body producing larger amounts of IgE all of a sudden ? My weight hasn't changed. My lifestyle hasn't changed. I'm just puzzled. I guess I'll sleep in the bathtub tonight. I don't think dust mites can leave on cast iron, can they? > > Back to the doc I guess. I'm pretty much ready to throw in the towel and accept my fate. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Pat, That's pretty much what I figured was going on. The thing that tells me I'm being overwhelmed by allergens is the itching. For me that's the tell-tale sign. I'm puzzled why this is the case because I go to great lengths to keep my environment " allergy-proofed. " Perhaps this is just a natural course of events that comes with age. I'll talk to my doc shortly. Thanks, MommaA <mommaa@...> wrote: I mostly monitor the site now and don't interfere or add my 2 cents in much, but here goes... I explained this to another patient in military terms and he thanked me because he understood easily. Hope it works for you. You have to imagine IgE is a little militia that is very organized and can cause havoc when left run amuck. Xolair is the blocking force that keeps the militia at bay. When Militia men die in the persuit of havoc, they are replaced. Sometimes the replacements are more than the original force. When this happens the Xolair dose doesn't have enough anti-IgE to combat it. The Xolair is still working, just not strong enough. The same applies to bodies. IgE is created by our bodies but the bad part of the IgE set off the cascade of swelling in the airways, runny nose, hives etc...Xolair attaches to the IgE molecule and doesn't allow the allergy cascade to happen. When we are faced with increased allergens or new allergens and on the same dose of Xolair, there isn't enough Xolair to attach to all of the IgE molecules and neuter them. IgE testing is ineffective while on Xolair because the tests do not differentiate between neutered IgE and free floating IgE. So your physician can do extra allergy tests to the elements high on the charts right now or just increase your dose to see how you do. Sometimes allergy tests are not that accurate. It depends on a whole host of factors. My advice is just talk to your practitioner and tell he/she what your symptoms are and that you'd like to try increasing the dose during this season to see if you can keep symptoms at bay. Hope I helped a little. Pat __________________________________________________ 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.