Xolair Adventure

Well as part of my FYI plan I wanted to try Xolair to get my IGE levels down. I have ABPA (allergic bronchopulmonary aspergillosis), I was diagnosed with it over 5 years ago after repeated hemoptysis episodes with no apparent infection. I have included small article on ABPA and Xolair below as well as links if you woudl like more information. Simply put ABPA means I am severely allergic to mold which is everywhere in our environment. My body overreacts to this mold and produces a severe allergic reaction that affects my lungs this is measured by taking my blood and seeing what my IGE level is. IGE basically measures how out of whack and crazy your immune response has become as a result of exposure to the aspergillosis, the higher it is, generally the worse off your lungs are. Though some have high ige with little apparent affect. Initially my IGE levels were about 1400 which is HIGH, normal levels woudl be around 75. I did a course of prednisone for a # of months and once my IGE levels reached about 1/2 or 5-700 then we started tapering off the prednisone since cutting that level in 1/2 is considered a 'success'. Funny how we considered about 10 times a normal level a 'success' but anyway that is standard protocol. In the past 4 years my ABPA has been considered in 'remission' according to standard clinical terms since I have had no further effects from it (though I do still have occasional bleeds) and my IGE level has remained in the 3-400 level. I foudn out abotu Xolair on this forum and asked my CF docs about it since it has the ability if successful to greatly reduce or eliminate the IGE in my body. They gave me the whole "its not an approved treatment for CF and ABPA" speech. "BEsides, they said, your IGE is so low and you are not symptomatic." This is where my docs and I differ. HOW do they know I'm not symtomatic, perhaps my PFT's woudl imrpove even more if my IGE levels were reduced, perhaps my asthma woudl disappear. THe truth is we get so used to what I refer to as 'CF standards' that if we are doing good or great by those standards we take the 'if it isnt broke dont fix it' approach. I challenge that approach. So, I went to an allergist, got tested for allergies and started on shots which in and of itself should be a huge help to me and most CF'ers. Then we talked about the fact that I meet the criteria for Xolair. My allergist sent my CF docs a note saying he woudl begin treatment,got not objections and we proceeded. You have to apply to get xolair treatment, so I did. I met the criteria and was approved. Then you have to get an IGE level before first dose as dosage it dependent upon your body weight and IGE level. Lucky me my IGE level is "So HIGH" per allergist I dont qualify for 1x month shot, I have to go every other week ! Funny how CF docs (with their standards in mind) think my IGE level is 'so low' and consider me a success and anyone outside of the CF realm things I am "SO HIGH" , My first shot was on thursday and I didnt go into anaphylactic shock (there is about 1% risk of this). SO I figure we are dong good. THe shot is in oil so it is very thick, and it is a larger shot so they break it up into two syringes, one in each arm. So every other week I get my 'normal' 3 allergy shots AND 2 xolair shots---I was feeling like a regular pin cushion ! If it works it will all be worht it. Other regulations are it has to be given when doctor is in office incase complications arise, you have to wait 30 minutes (used to be 2 hours) after shot to ensure no reaction takes place, and you have to carry an epi pen since the reaction can happen in rare cases up to 48 hours after the shot (and not just first shot any time you take it). Besides being a bummer having to get it every 2 weeks I am bummed to see the cost is so high, my insurance was charged $2,137 for one month worth. I am fortunate that my insurance paid 100% but from what I understand some insurances balk at the sticker shock a bit. My plan is to take the Xolair for the next 2 months and then I have an appointment with the allergist. I am going to request an IGE level at that time (and if its low highlight it and send it to the CF docs :cool and if it is working I will ask to try the once a month dosing and see if it continues to work. 2X a month is really such a pain but worth it! If you are interested in Xolair and have any ?'s let me know. WOW this was a long post, if you are still here than I hope you found the information somewhat beneficial. Here is a small exert from healthline that describes ABPA, link for full article is provided. http://www.healthline.com/gale...y-aspergillosis Allergic bronchopulmonary aspergillosis Definition Allergic bronchopulmonary aspergillosis, or ABPA, is one of four major types of infections in humans caused by Aspergillus fungi. ABPA is a hypersensitivity reaction that occurs in asthma patients who are allergic to this specific fungus. Description ABPA is an allergic reaction to a species of Aspergillus called Aspergillus fumigatus. It is sometimes grouped together with other lung disorders characterized by eosinophilia - an abnormal increase of a certain type of white blood cell in the blood - under the heading of eosinophilic pneumonia. These disorders are also called hypersensitivity lung diseases. ABPA appears to be increasing in frequency in the United States, although the reasons for the increase are not clear. The disorder is most likely to occur in adult asthmatics aged 20-40. It affects males and females equally. Causes and symptoms ABPA develops when the patient breathes air containing Aspergillus spores. These spores are found worldwide, especially around riverbanks, marshes, bogs, forests, and wherever there is wet or decaying vegetation. They are also found on wet paint, construction materials, and in air conditioning systems. ABPA is a nosocomial infection, which means that a patient can get it in a hospital. When Aspergillus spores reach the bronchi, which are the branches of the windpipe that lead into the lungs, the bronchi react by contracting spasmodically. So the patient has difficulty breathing and usually wheezes or coughs. Many patients with ABPA also run a low-grade fever and lose their appetites. What Is Xolair?