Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 I need help from anyone who has advice. I have severe allergies and asthma. About 50 allergies, a lot are environmental and pets, dust, etc. I am even allergic to the laundry soap some people have in their clothes. I started xolair about 6 months ago. It hasn't been any magic cure, however, it has helped me go from taking a ventolin nebulizer every 3-4 hours, to every 5-8 hours. It has also helped with my nasal allergies, etc. I feel like I can breathe some better. But, if I get around anything I am allergic to I will still get sick. But it seems to help in that area some. But, I have almost decided to stop xolair, because I had read that the amount of anaphaltic reactions doubled from 1% to 2% and that even though I have to stay at the doctors for two hours after the injections( I get the maximum dose every two weeks), that I am still in danger for up to 24 hours. Now they say it is up to 4 days after the shots. I live where I have to travel distances between each town, and if I were to have a reaction I wouldn't be just around the corner to a hospital. I do have an epi-pen however, I was told that the epi-pen will only last 2-5 minutes, and I would need a second epi-pen and to get help right away. But, I do have cardiac arrhythmias, and should be in a hospital if any thing like this ever occurred. I have had no problems taking xolair so far, but occasionally I will get a small localized reaction at the injection sites, a red, round hive about the size of a silver dollar, about 24 hours after the injections, then it goes away. Has anyone else experienced this? The other major thing for me is that I am allergic to hamsters. And xolair has ovary cells from a chinese hamster. The doctor told me that it shouldn't be a problem. But, when I started xolair I had a class 1 allergy to hamsters, since the xolair treatment, I now have a class 4 allergy to hamsters. My specialist, nor my regular doctor have any idea whether or not it is because of the xolair. Also, they have no idea whether the rast testing is any longer a good indicator for allergies after you start xolair. Does anyone know if RAST testing is messed up at all by taking xolair. Noone seems to know. It seems to me that if I am allergic to hamsters that I could be in danger of anaphalaxis, on the info. sheet for xolair it says not to take if allergic to any of the ingredients. But the doctor thinks it's ok,. I don't know what to do, because if I don't take xolair I will be a lot worse, but if I have a reaction, I could be in significant danger as I have severe persistant asthma. Over the past three years my allergies have gotten worse, and more different allergies than I have ever had in my life, the doctors think that I will continue to get worse. I was already to stop xolair. The stress from worrying about a reaction seems worse than being sick sometimes, but then I had an allergic reaction today, to someone who had a certain laundry detergent in their clothing. I pretty much can't go anywhere or do anything. Also, does anyone know if taking xolair can make allergies worse later on, especially after you stop treatment. I only have until Friday to decide what to do with the xolair. Today is Wed. I have no idea what to do, I already cancelled last week's shots and rescheduled this week for Friday. I was going to stop the shots, now I just don't know what to do. The doctor's don't seem to either. One thinks I should continue the xolair until I have a reaction. But, I think I am high risk for a reaction. Does any one have any information that could help me? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 --- In , " haroldbrenda " <haroldbrenda@...> wrote: > > I need help from anyone who has advice. I have severe allergies and > asthma. About 50 allergies, a lot are environmental and pets, dust, etc. > I am even allergic to the laundry soap some people have in their > clothes. I started xolair about 6 months ago. It hasn't been any magic > cure, however, it has helped me go from taking a ventolin nebulizer > every 3-4 hours, to every 5-8 hours. It has also helped with my nasal > allergies, etc. I feel like I can breathe some better. But, if I get > around anything I am allergic to I will still get sick. But it seems > to help in that area some. > But, I have almost decided to stop xolair, because I had read that the > amount of anaphaltic reactions doubled from 1% to 2% and that even > though I have to stay at the doctors for two hours after the > injections( I get the maximum dose every two weeks), that I am still > in danger for up to 24 hours. Now they say it is up to 4 days after > the shots. > I live where I have to travel distances between each town, and if I were > to have a reaction I wouldn't be just around the corner to a hospital. > I do have an epi-pen however, I was told that the epi-pen will only > last 2-5 minutes, and I would need a second epi-pen and to get help > right away. But, I do have cardiac arrhythmias, and should be in a > hospital if any thing like this ever occurred. > I have had no problems taking xolair so far, but occasionally I will > get a small localized reaction at the injection sites, a red, round > hive about the size of a silver dollar, about 24 hours after the > injections, then it goes away. Has anyone else experienced this? > The other major thing for me is that I am allergic to hamsters. And > xolair has ovary cells from a chinese hamster. The doctor told me that > it shouldn't be a problem. But, when I started xolair I had a class 1 > allergy to hamsters, since the xolair treatment, I now have a class 4 > allergy to hamsters. My specialist, nor my regular doctor have any > idea whether or not it is because of the xolair. Also, they have no > idea whether the rast testing is any longer a good indicator for > allergies after you start xolair. Does anyone know if RAST testing is > messed up at all by taking xolair. Noone seems to know. > It seems to me that if I am allergic to hamsters that I could be in > danger of anaphalaxis, on the info. sheet for xolair it says not to > take if allergic to any of the ingredients. But the doctor thinks it's > ok,. I don't know what to do, because if I don't take xolair I will be > a lot worse, but if I have a reaction, I could be in significant > danger as I have severe persistant asthma. Over the past three years > my allergies have gotten worse, and more different allergies than I > have ever had in my life, the doctors think that I will continue to > get worse. I was already to stop xolair. The stress from worrying > about a reaction seems worse than being sick sometimes, but then I had > an allergic reaction today, to someone who had a certain laundry > detergent in their clothing. I pretty much can't go anywhere or do > anything. Also, does anyone know if taking xolair can make allergies > worse later on, especially after you stop treatment. > I only have until Friday to decide what to do with the xolair. Today > is Wed. I have no idea what to do, I already cancelled last week's > shots and rescheduled this week for Friday. I was going to stop the > shots, now I just don't know what to do. The doctor's don't seem to > either. One thinks I should continue the xolair until I have a > reaction. But, I think I am high risk for a reaction. Does any one > have any information that could help me? Thanks. > I am so sorry you are having such problems. My advice is to trust your doctor. If you still have any fears about taking Xolair, talk to him/her about it. If you still have fears, you have every right to refuse to take it and go back to taking a drug like Prednisone. Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Xolair is not made up of ground up chinese hamster bits that could trigger an allergic response. Indeed, no one really knows how MAST is affected post-xolair. Here is the website from genetech describing how they make humanized monoclonal antibodies (what xolair is) http://www.gene.com/gene/products/information/immunological/xolair/development.j\ sp If you have such fear of developing anaphylaxis that you are in constant anxiety, I would stop it. If you get worse, you can always restart it. Your MD has no opinion on the matter? I would also recommend getting someone to talk to professionally about how your allergies are affecting your life. Chronic illness and depression and anxiety go hand in hand but there are interventions to make the psychological manifestations better and make the situation easier to cope with. I was in counselling for many months to help me cope and it changed my outlook on the situation immensely. ____________________________________________________ Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now at http://ca.toolbar.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 > > > > I need help from anyone who has advice. I have severe allergies and > > asthma. About 50 allergies, a lot are environmental and pets, dust, etc. > > I am even allergic to the laundry soap some people have in their > > clothes. I started xolair about 6 months ago. It hasn't been any magic > > cure, however, it has helped me go from taking a ventolin nebulizer > > every 3-4 hours, to every 5-8 hours. It has also helped with my nasal > > allergies, etc. I feel like I can breathe some better. But, if I get > > around anything I am allergic to I will still get sick. But it seems > > to help in that area some. > > But, I have almost decided to stop xolair, because I had read that the > > amount of anaphaltic reactions doubled from 1% to 2% and that even > > though I have to stay at the doctors for two hours after the > > injections( I get the maximum dose every two weeks), that I am still > > in danger for up to 24 hours. Now they say it is up to 4 days after > > the shots. > > I live where I have to travel distances between each town, and if I > were > > to have a reaction I wouldn't be just around the corner to a hospital. > > I do have an epi-pen however, I was told that the epi-pen will only > > last 2-5 minutes, and I would need a second epi-pen and to get help > > right away. But, I do have cardiac arrhythmias, and should be in a > > hospital if any thing like this ever occurred. > > I have had no problems taking xolair so far, but occasionally I will > > get a small localized reaction at the injection sites, a red, round > > hive about the size of a silver dollar, about 24 hours after the > > injections, then it goes away. Has anyone else experienced this? > > The other major thing for me is that I am allergic to hamsters. And > > xolair has ovary cells from a chinese hamster. The doctor told me that > > it shouldn't be a problem. But, when I started xolair I had a class 1 > > allergy to hamsters, since the xolair treatment, I now have a class 4 > > allergy to hamsters. My specialist, nor my regular doctor have any > > idea whether or not it is because of the xolair. Also, they have no > > idea whether the rast testing is any longer a good indicator for > > allergies after you start xolair. Does anyone know if RAST testing is > > messed up at all by taking xolair. Noone seems to know. > > It seems to me that if I am allergic to hamsters that I could be in > > danger of anaphalaxis, on the info. sheet for xolair it says not to > > take if allergic to any of the ingredients. But the doctor thinks it's > > ok,. I don't know what to do, because if I don't take xolair I will be > > a lot worse, but if I have a reaction, I could be in significant > > danger as I have severe persistant asthma. Over the past three years > > my allergies have gotten worse, and more different allergies than I > > have ever had in my life, the doctors think that I will continue to > > get worse. I was already to stop xolair. The stress from worrying > > about a reaction seems worse than being sick sometimes, but then I had > > an allergic reaction today, to someone who had a certain laundry > > detergent in their clothing. I pretty much can't go anywhere or do > > anything. Also, does anyone know if taking xolair can make allergies > > worse later on, especially after you stop treatment. > > I only have until Friday to decide what to do with the xolair. Today > > is Wed. I have no idea what to do, I already cancelled last week's > > shots and rescheduled this week for Friday. I was going to stop the > > shots, now I just don't know what to do. The doctor's don't seem to > > either. One thinks I should continue the xolair until I have a > > reaction. But, I think I am high risk for a reaction. Does any one > > have any information that could help me? Thanks. > > > > > I am so sorry you are having such problems. > > My advice is to trust your doctor. If you still have any fears about > taking Xolair, talk to him/her about it. If you still have fears, you > have every right to refuse to take it and go back to taking a drug > like Prednisone. > > Doug > Group founder > Thanks for the advice, Luckily I have been off prednisone for three years without the help of xolair. However, I have severe allergies and breathing problems without the prednisone, I am disabled and have to stay away from a lot of people, places, and things. But, I had severe side effects from the prednisone, when I did take it for years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 > Thanks for the advice, Luckily I have been off prednisone for three > years without the help of xolair. However, I have severe allergies and > breathing problems without the prednisone, I am disabled and have to > stay away from a lot of people, places, and things. But, I had severe > side effects from the prednisone, when I did take it for years. > You are most welcome! I will be praying for you my friend. Doug Group founder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 thankyou for the information and advice, I have been talking to a therapist and am on anxiety meds. unfortunately it hasn't helped much. I did talk to my doctor, he thinks I should stay on xolair , but did tell me in great detail what would happen if I had an anaphalactic reaction and how dangerous it would be. Still not sure what I am going to do at this point. --- <carrie72583@...> wrote: > Xolair is not made up of ground up chinese hamster > bits that could trigger an allergic response. > Indeed, > no one really knows how MAST is affected > post-xolair. > > > Here is the website from genetech describing how > they > make humanized monoclonal antibodies (what xolair > is) > > http://www.gene.com/gene/products/information/immunological/xolair/development.j\ sp > > If you have such fear of developing anaphylaxis that > you are in constant anxiety, I would stop it. If you > get worse, you can always restart it. Your MD has no > opinion on the matter? > > I would also recommend getting someone to talk to > professionally about how your allergies are > affecting > your life. Chronic illness and depression and > anxiety > go hand in hand but there are interventions to make > the psychological manifestations better and make the > situation easier to cope with. I was in counselling > for many months to help me cope and it changed my > outlook on the situation immensely. > > > > > > ____________________________________________________ > > Canada Toolbar: Search from anywhere on the > web, and bookmark your favourite sites. Download it > now at > http://ca.toolbar.. > ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. http://get.games./proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Remember anaphylaxis does not mean necessarily anaphylactic shock. If a person has hives and is wheezing, that is an anaphylactic reaction, though mild. It has the potential of becoming anaphylactic shock so you are urged to seek medical care. I have mild anaphylaxis a few times a year, and have a plan in place with my doctor. Depending on the exposure and the subsequent reaction, I do different things. BTW, Epis are used to treat symptoms of anaphylaxis, not reverse the reaction. An antihistamine (or 2) and often steroids are used to stop and reverse the reaction. The epis buy time for the other medicines to take effect. Always carry at least 2 epi-pens (or the new Twinject) just in case the first one fails to fire or there is a misfire. Some reactions can be bi-phasic, meaning after the first epi wears off, the symptoms come back. This is one of the main reasons seeking medical care is suggested - to see if the reaction has slowed and is reversing. Since I need a black box warning on so many things in general life (various foods, environmental allergies,etc), the one on Xolair is not scary to me. And with my last accidental egg exposure, I had a much milder reaction which I attribute to Xolair. My doctor and I both believe it kept me from having a stronger anaphylactic reaction and I was able to treat with just my rescue inhaler and benadryl. (Remember don’t do this without advice from your doctor!) Best wishes for an easy breathing day, No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.8/906 - Release Date: 7/17/2007 6:30 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.10/908 - Release Date: 7/19/2007 6:10 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 Thankyou for your information, it was very helpful. I just saw the doctor today and will be seeing another specialist as a referral as well. You say that you have an allergic reaction as anaphalaxis a few times a year. How does that happen do you not always know what you are allergic to or do you have reactions to new things all the time. And what are the symptoms, besides hives and wheezing what else is considered anaphalaxis? Does it happen right away or do you have delayed reactions as well. How do you know that you are having anaphalaxis if it is milder, for example what happened to you with the egg exposure. I have severe enviromental , pet and chemical allergies and sensitivites. And have alot of bad syptoms, I sometimes have arrythimia's either from the asthma meds, and/or the allergies. I have almost passed out, and started blacking out more than once, before the xolair, sometimes I would have to stay in bed for a day or two. Thankyou for any additional info. you can give me on this. --- Belsky <crdb@...> wrote: > Remember anaphylaxis does not mean necessarily > anaphylactic shock. If a > person has hives and is wheezing, that is an > anaphylactic reaction, though > mild. It has the potential of becoming anaphylactic > shock so you are urged > to seek medical care. I have mild anaphylaxis a few > times a year, and have a > plan in place with my doctor. Depending on the > exposure and the subsequent > reaction, I do different things. > > > > BTW, Epis are used to treat symptoms of anaphylaxis, > not reverse the > reaction. An antihistamine (or 2) and often steroids > are used to stop and > reverse the reaction. The epis buy time for the > other medicines to take > effect. Always carry at least 2 epi-pens (or the new > Twinject) just in case > the first one fails to fire or there is a misfire. > Some reactions can be > bi-phasic, meaning after the first epi wears off, > the symptoms come back. > This is one of the main reasons seeking medical care > is suggested - to see > if the reaction has slowed and is reversing. > > > > Since I need a black box warning on so many things > in general life (various > foods, environmental allergies,etc), the one on > Xolair is not scary to me. > And with my last accidental egg exposure, I had a > much milder reaction which > I attribute to Xolair. My doctor and I both believe > it kept me from having a > stronger anaphylactic reaction and I was able to > treat with just my rescue > inhaler and benadryl. (Remember don’t do this > without advice from your > doctor!) > > > > Best wishes for an easy breathing day, > > > > > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.476 / Virus Database: 269.10.8/906 - > Release Date: 7/17/2007 > 6:30 PM > > > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.476 / Virus Database: 269.10.10/908 - > Release Date: 7/19/2007 > 6:10 PM > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 I am airborne allergic to egg (or was until Xolair) and had two reactions (tingling lips and tongue, asthma flare, and disorientation) when egg was cooked unexpectedly at our synagogue. I also was served a salad with a ‘surprise’ second salad dressing on it at a restaurant (after checking with them on the ingredients in the first!) that triggered a delayed anaphylactic reaction same as above but was in the doctor’s office and they saw my blood pressure drop as well. Unfortunately I have developed some new allergies which we can’t get accurate testing for as I have been on Xolair for 9 months. We think I am now having mild anaphylactic reactions to kiwi fruit, though I used to eat them all the time without a reaction. One reason we suspect kiwi is because I am latex reactive and they can cross-react. I also reacted 2 days ago to something though we are not sure if it was one single item or just too many allergens all at once – the ‘bucket too full’ theory. For example, I am fine when my husband cuts open a watermelon. But if he comes in after mowing the lawn and then cuts the watermelon, it is too much for my system and I react. If I am exposed to just one of them, I itch or sneeze but don’t usually have an asthma flare and break out in a rash (usually all over my torso). But if I have to deal with both in the air at once, it is too much for my body to handle and I have a much stronger reaction. We are not sure what triggered this latest episode though. We are trying to control it all with Zyrtec, Singulair, Advair and my Xolair shots, but are about to add Bendryl and possibly prednisone to the mix to control things better. I always have my epis handy but have never had to use them. My reactions have been delayed enough that I get to my allergist and they inject me. I have in the past had anaphylactic reactions to penicillin, allergy shots and to one type of anesthesia (propafal – sp? – which contains egg). I wear a Medic Alert bracelet at all times just in case something happens and I can’t talk for myself. The following link has info on anaphylaxis - HYPERLINK " http://www.nlm.nih.gov/medlineplus/ency/article/000844.htm " http://www.nlm.n ih.gov/medlineplus/ency/article/000844.htm Best wishes for an easy breathing day, B. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.10/908 - Release Date: 7/19/2007 6:10 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.14/912 - Release Date: 7/22/2007 7:02 PM Quote Link to comment Share on other sites More sharing options...
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