Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 , I was on 150 for 1 year and after the 1st 6 months I felt as though I was beginning to see some benefit. At that time it seemed Xolair would work every other month, in an exact pattern. After the 1st year I decided to stop taking it because I felt it wasn't working. That's when my doctor told me my IgE was only 44 and since it was so low it was possible I wouldn't benefit from Xolair. Once I stopped taking it I got very sick. When I hopped into bed I could feel my lung getting tight and the mucus secretions were just incredible -- worse than I've ever experienced. At that time I was thinking, " Great, I'm addicted to this expensive drug that isn't going to help me. " I went back on the 150 and the sickness went away. Unfortunately, I was still in the pattern of having it work periodically. I went to my doc after 18 months and said the magic words, which was, " it only seems to work for 2 weeks. " He gave me one of those looks like, " Really? " The reason....he had another patient who said the same thing so, considering it was such a new drug, he suspected it wasn't lasting as long as it should. He called Genentech and they recommended doing a 75mg booster 1/2 way through the month. My doc sent the prescription to my pharmacy and they never even questioned it. Ever since then, it's been smooth sailing. Xolair worked immediately and all of the time! I think you need to give it more time since you're pretty new into the therapy but if you don't show any improvement shortly you can run my case by your doc. You may run into some resistance because doctors are very reluctant to change the dose on a med that is highly standardized. If your doc calls Genentech and they give you the same recommendation that I got then you may have some luck but then you have insurance issues..... If my insurance company cancelled my approval today I'd go and get a 2nd job to cover the cost of this medication -- it's changed my life that much! Good Luck! <justinlouisville@...> wrote: Hi , I'm intrigued by what you said about 150 mg of Xolair not working even though your IgE was only 44. My most recent IgE was 91 and I'm on 150 mg, but so far I haven't seen any results. I haven't been on Xolair that long (I'm due for my 4th shot tomorrow), so I'm being as patient as possible, but I'm starting to think about requesting a dosage increase from my doctor. In 2004, my IgE was 188, so at least I have the lab work to back me up in getting an additional vial. Would you mind sharing more details about your situation? For example, how long did you stay at 150 mg before increasing the dosage? Did you see any effect when on 150 mg alone? How soon after adding the 75 mg dose did you start seeing improvement? Did your doctor have a hard time getting approval to increase the dosage? Thanks! My IgE count is fairly low at 44 but oddly enough, 150 didn't do the job. I currently take 150 and 75 alternating every two weeks and it has made a world of difference. > --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi , Thanks so much for sharing your experience with Xolair. I'm so glad you and your doctor were able to find a dosage regimen that works for you! During my appointment on Thursday, I asked my doctor about increasing my dose, and he said he *might* consider it after several more months at 150 mg. I imagine it will still take some pushing and prodding on my part, but it may help that my IgE level from 2004 was double that of my current IgE level. I will be sure to tell him about your case when we get to that point. Who knows...maybe the 150 mg will eventually do the trick! It's so difficult to be patient, but I'm trying my hardest! Thanks again! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hang in there . I know it's hard to be patient when you don't feel well but fingers crossed, you'll see results soon. I see my Doc on Nov 1st and I'm going to ask him if I can cut the booster down to 50mg instead of 75. I'd like to take the lowest dose possible if I can. <justinlouisville@...> wrote: Hi , Thanks so much for sharing your experience with Xolair. I'm so glad you and your doctor were able to find a dosage regimen that works for you! During my appointment on Thursday, I asked my doctor about increasing my dose, and he said he *might* consider it after several more months at 150 mg. I imagine it will still take some pushing and prodding on my part, but it may help that my IgE level from 2004 was double that of my current IgE level. I will be sure to tell him about your case when we get to that point. Who knows...maybe the 150 mg will eventually do the trick! It's so difficult to be patient, but I'm trying my hardest! Thanks again! --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Thanks for your encouraging words, . I really appreciate it! By the way, you mentioned that your symptoms became substantially worse than normal after going off Xolair for awhile. Do you think you were having some sort of rebound effect? I had never even considered that before you mentioned it. For anyone else who has gone off of Xolair for a time, have you experienced a rebound effect where your symptoms became worse than they were before going on Xolair? Thanks! > > Hang in there . I know it's hard to be patient when you don't feel well but fingers crossed, you'll see results soon. > > I see my Doc on Nov 1st and I'm going to ask him if I can cut the booster down to 50mg instead of 75. I'd like to take the lowest dose possible if I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I'm not really sure why my symptoms became worse but it was just horrible. I suspect it is because my body was shocked by not having Xolair. It was probably an over-reaction that would stabilize with time. <justinlouisville@...> wrote: Thanks for your encouraging words, . I really appreciate it! By the way, you mentioned that your symptoms became substantially worse than normal after going off Xolair for awhile. Do you think you were having some sort of rebound effect? I had never even considered that before you mentioned it. For anyone else who has gone off of Xolair for a time, have you experienced a rebound effect where your symptoms became worse than they were before going on Xolair? Thanks! > > Hang in there . I know it's hard to be patient when you don't feel well but fingers crossed, you'll see results soon. > > I see my Doc on Nov 1st and I'm going to ask him if I can cut the booster down to 50mg instead of 75. I'd like to take the lowest dose possible if I can. --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 I had to go off Xolair for about 5 months due to changes in insurance. I slowly " got worse " during that time. Neither my doctor nor I saw this as a rebound effect, but as due to my body continuing to make IgE for which there was no Xolair for it to bind to. All the new IgE was binding to mast cells and causing me to have allergic reactions and asthma attacks. I had to have another IgE panel done to go back on Xolair once the new insurance's pre- exisiting condition period had past...my IgE was as high as it ever was. There is some thinking that folks should be able to go off Xolair after 2-3 years. This stupifies me, unless there will be some of us whose bodies start manufacturing IgE at slower rates or not at all (my pulmo says this is possible). Addy Remember to talk to your doc before making changes to your treatment plan. > > > > Hang in there . I know it's hard to be patient when you > don't feel well but fingers crossed, you'll see results soon. > > > > I see my Doc on Nov 1st and I'm going to ask him if I can cut the > booster down to 50mg instead of 75. I'd like to take the lowest dose > possible if I can. > > > > > > > --------------------------------- > Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2006 Report Share Posted November 2, 2006 , I just saw my doc tonight and I'm going to stay on 150/75 throughout the winter because that is traditionally my worst time of year. I'm definitely a warm weather person. When spring arrives I'm going to cut down to 100/100 and if that works then 75/75. I suspect it's the frequency of the shot that is helping me so much, rather than the dose but we'll have to experiment a little to see if that's really the case. Only problem....Xolair doesn't come in 75mg doses so I'm dumping part of the 150 down the drain. At that cost.....what a shame....... McLaughlin <gmclaughlin1000@...> wrote: I'm not really sure why my symptoms became worse but it was just horrible. I suspect it is because my body was shocked by not having Xolair. It was probably an over-reaction that would stabilize with time. <justinlouisville@...> wrote: Thanks for your encouraging words, . I really appreciate it! By the way, you mentioned that your symptoms became substantially worse than normal after going off Xolair for awhile. Do you think you were having some sort of rebound effect? I had never even considered that before you mentioned it. For anyone else who has gone off of Xolair for a time, have you experienced a rebound effect where your symptoms became worse than they were before going on Xolair? Thanks! > > Hang in there . I know it's hard to be patient when you don't feel well but fingers crossed, you'll see results soon. > > I see my Doc on Nov 1st and I'm going to ask him if I can cut the booster down to 50mg instead of 75. I'd like to take the lowest dose possible if I can. --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Addy - Thanks for sharing your experience with this. It definitely makes sense that people would slowly return to their original pre-Xolair condition after stopping Xolair treatment, but it sounded like got worse than ever right after stopping it. He's probably right about it being something that would have stabilized with time though. Interesting theory about some people being able to go off Xolair after a couple of years. Why do I think they'll have a hard time finding volunteers to stop Xolair treatment just to test this theory?!? ;-) Thanks again! > > I had to go off Xolair for about 5 months due to changes in > insurance. I slowly " got worse " during that time. Neither my > doctor nor I saw this as a rebound effect, but as due to my body > continuing to make IgE for which there was no Xolair for it to bind > to. All the new IgE was binding to mast cells and causing me to > have allergic reactions and asthma attacks. I had to have another > IgE panel done to go back on Xolair once the new insurance's pre- > exisiting condition period had past...my IgE was as high as it ever > was. > > There is some thinking that folks should be able to go off Xolair > after 2-3 years. This stupifies me, unless there will be some of us > whose bodies start manufacturing IgE at slower rates or not at all > (my pulmo says this is possible). > > Addy > Remember to talk to your doc before making changes to your treatment > plan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 That sounds like a good plan, . Thanks for letting us know. It is a shame to throw out so much of that liquid gold though! I'm curious...is it the cold air itself that gives you problems during the winter? Winter is one of my best seasons since most of the allergens are gone...spring and fall are definitely my worst seasons with all the tree and weed pollen. Thanks, > > , > > I just saw my doc tonight and I'm going to stay on 150/75 throughout the winter because that is traditionally my worst time of year. I'm definitely a warm weather person. When spring arrives I'm going to cut down to 100/100 and if that works then 75/75. I suspect it's the frequency of the shot that is helping me so much, rather than the dose but we'll have to experiment a little to see if that's really the case. Only problem....Xolair doesn't come in 75mg doses so I'm dumping part of the 150 down the drain. At that cost.....what a shame....... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 I'm not really sure. Perhaps it's the dry or cold air. I think it's a bit of both but I know I'm definitely a warm weather person. I tend to go slightly downhill in October, probably because of all the leaves falling/hay fever, etc....when we get a real hard freeze that subsides but I don't completely come around until Spring. I don't have any Spring time allergies, thankfully. C'mon Spring. <justinlouisville@...> wrote: That sounds like a good plan, . Thanks for letting us know. It is a shame to throw out so much of that liquid gold though! I'm curious...is it the cold air itself that gives you problems during the winter? Winter is one of my best seasons since most of the allergens are gone...spring and fall are definitely my worst seasons with all the tree and weed pollen. Thanks, > > , > > I just saw my doc tonight and I'm going to stay on 150/75 throughout the winter because that is traditionally my worst time of year. I'm definitely a warm weather person. When spring arrives I'm going to cut down to 100/100 and if that works then 75/75. I suspect it's the frequency of the shot that is helping me so much, rather than the dose but we'll have to experiment a little to see if that's really the case. Only problem....Xolair doesn't come in 75mg doses so I'm dumping part of the 150 down the drain. At that cost.....what a shame....... > > --------------------------------- Cheap Talk? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Speak for yourself, ! > C'mon Spring. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Winter is no picnic for me either. Moldy indoors combined with all kinds of stinky odors and fragrances that accumulate with windows shut and no escape to the fresh outdoors because of the cold. I really dread winter. > > > C'mon Spring. > Quote Link to comment Share on other sites More sharing options...
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