From a Xolair patient, and drug study "lab rat"

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plusgirl
New Member


Date Joined May 2006
Total Posts : 8
   Posted 5/1/2006 12:57 PM (GMT -6)   
I noticed there had been a few posts several days ago about Xolair.  I was in the drug study for an anti-IgE drug over ten years ago and I believe Xolair is the result.  The FDA approved it for use two summers ago.  I am considered a severe, persistent, steroid-dependent asthmatic with seasonal and environmental contact allergies.  My regimen consisted of Azmacort inhaler, albuterol inhaler and, whenever I got a cold it took up serious residence in my lungs requiring a course of prednisone and antibiotics to help ease the exacerbation of asthma symptoms it caused. 
 
During the drug study all patients were weaned off their Azmacort inhaler, or at least the attempt was made.  I was weaned off and steroidal inhaler free until the end of the trial.  When the codes were broken the clinic notified me that I had been on a half dose of the studied drug at the time.
 
Fast forward to two years ago.  Xolair has been approved by the FDA to treat moderate to severe persistent steroid dependent asthmatics.  The drug is now administered as a subcutaneous injection (just under the skin as opposed to into a large muscle) either once or twice a month.  This drug is handled only by five specialty pharmacies in the US (I don't know about outside the US) and it takes some doing to get your doc's office to coordinate with them to ship the drug.  The drug has to be refrigerated and shipped that way as well.  Once it is reconstituted it is only good for 8 hours.  It would be very difficult to self-inject this drug IMO because it is very thick and injecting it too quickly hurts. 
 
I have not had a course of prednisone for two years since starting this drug and have been able, by and large, to avoid antibiotic use as well.  Colds seem to stay where they belong...in my sinuses...IF I get them.  I did wean myself off my Pulmicort inhaler and add I it back in if I get a cold or, as now, there is a wicked pollen season going on in NH.  I use far less than the prescribed dosage and wean off again when any worsening symptoms go away.  This has all been done with the supervision and approval of my primary care doc.
 
Some facts:
What is an anti-IgE drug?  There are a number of types of Immunoglobulin in your blood(known by letters of the alphabet), IgE is apparently the one responsible for allergic histamine response.  Xolair binds itself to the IgE in your blood, essentially turning off the allergic response in the blood chemistry.  Or at least that's how I understand it.
 
Xolair is NOT, I repeat, NOT a replacement for your rescue inhaler/nebulizer.  I have exercise induced asthma as well (just for extra special fun) and use my albuterol as prevention before I hike or run with the dog.
 
Xolair is a genetically engineered drug and is hideously expensive.  If you do not have insurance that will cover it, check with the drug company, it claims to have programs for people who cannot afford the drug.
 
You may have to be a very militant advocate for yourself to investigate this with your doc.  His/her office staff is going to have to coordinate the initial paperwork, etc with a specialty pharmacy and then stay on top of coordinating the shipping with your visits.  It is a MUST that you stay within the treatment regimen of once every 15 days (twice a month) or once every 30 days.  I have discovered that if we slide my appointment by a week I experience worsening asthma symptoms.
 
An opinion:
Along with Xopenex, a drug developed by Sepracor with the express purpose of stripping out the molecules from albuterol that cause cardiac arrythmias(another drug developed beginning over a decade ago and only just approved by the FDA),  Xolair is an amazing evolution in the treatment of asthma.  I have experienced the change from shots of epinephrine (any wonder I'm an adrenaline junkie LOL) in the emergency room to nebulizer treatment to inhalers to this and feel lucky to have seen these changes over my lifetime.  I'll be 47 this summer and have been asthmatic all my life.
 
Good luck and hope that answers some questions.

plusgirl
New Member


Date Joined May 2006
Total Posts : 8
   Posted 5/1/2006 7:35 PM (GMT -6)   
Just a note: I am not a drug company representative, healthcare worker, or in any way related to the production, promotion, or sale of Xolair. I am a patient who saw an opportunity to participate in the evolution of asthma treatment when I was in the drug study and had such good result. I am now a patient who is having good result with this drug and I hope more steroid dependent asthmatics can get access to it. I believe the fewer anti-inflammatory steroids regardless of their delivery method makes for a healthier human being.

Also, I don't know how many of you are allergic to both dogs and cats but are more allergic to cats. I was one of those people, could not survive for long without wheezing and sneezing in a house where a cat was in residence. I got married and moved in with my husband, his cat, and my dog in December and am feeling no ill effect as a result. I can even hold the cat on my lap and pat him without wheezing. Although I still have to be vigilant about washing my hands because if I touch my eyes without doing that then I'm in trouble with itching and swelling. We also have to be disciplined about "swiffering" and vacuuming every other day or so but I am wheeze free in a house with a cat! I never thought I'd live to see the day!

Good luck to all!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23352
   Posted 5/1/2006 8:09 PM (GMT -6)   
Hi plusgirl, welcome to Healingwell. Thank you for sharing your experience with this drug. Asthma can be pretty scary so any information on new drugs is helpful.
@--->--Sherry--<---@
Uc since 1992 - Meds - Colazal, Colocort, Biotin, Coral Calcium
Secondary Raynauds Syndrome since 2004
Fibromyalgia since 2006
Co-mod for Ulcerative Colitis
Moderator for Allergies/Asthma
Continue helping others such as yourself by donating to Healingwell, every penny counts!
 

 
 


plusgirl
New Member


Date Joined May 2006
Total Posts : 8
   Posted 5/2/2006 10:03 AM (GMT -6)   

Asthma is scarier than people think.  No one told me it could kill me and then I found myself in the hospital in status asthma (an attack that won't stop regardless of intervention) for three days with a respiratory therapist watching me for respiratory failure.  People need to know asthma can kill you.  Work with your doctor, work with your meds, track your own symptoms, and know your own triggers.  Get healthy otherwise and stay that way.  Look for alternative therapies to work with your mainstream medical care and keep your doc in the loop if you get results with alternatives.  Once your symptoms are under control start exercising(which could be walking to start, years ago I started with an eighth of a mile which is about the length along a line of five telephone poles) a little bit at a time and build up your lung capacity.  Learn the "pursed lips" breathing technique to help empty your lungs of air completely.  Learn the yogic "complete breath" as a way of building up your lung capacity. Every little technique added together helps. 

Be your own best "doctor."  I actually had an emergency room doc say to me once, "What usually works for you?  If you've had asthma all your life then you know better than I do how to treat you."   I'm coming from 47 years of this, so I'm pretty militant about my own care, and have learned a lot along the way.  After all, it's my life we're talking about

 


Alias
New Member


Date Joined Mar 2003
Total Posts : 4
   Posted 5/26/2006 11:20 AM (GMT -6)   
My pulmonologist has recommeded xolair for me also. I was just wondering what your ige level was to qualify for this shot? My level was at 59 when they tested me. I am really nervous and unsure about getting it because of some of the things I have read. During clinical trials they noticed that some of the ones getting xolair came down with cancer. I have heard alot of wonderful, great things about how people feel while taking it, however the bad I've heard is really bad. Just not sure if the risk is worth it.

Badger05
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/3/2008 11:09 PM (GMT -6)   
I guess it depends on your situation. Taking the medication has definately been worth it to me. I have always had moderate to severe asthma and year-round allergies. For years I've been on the same regimin- rhinocort aqua, asthmanex (or something similar), singular, an antihistimine, and albuterol. Last year, however, I got worse and spontaniously gained almost 30 food allergies, many of which were deadly. Moreover, my asthma worsened and the situation aggrivated another condition I didn't even know I had.
I began taking Xolair in May. Early in the summer I was constantly sick from my other condition and my asthma was horrible. I pretty much lived on the two foods from my college-student diet I could still eat- mac and cheese and diced tomatoes. If someone was eating a peanut butter sandwhich on the other side of my 300 person lecture I'd start to go into anaphalaxis. Now, because of xolair, I've lost almost all the allergies and those that were really bad are incredibly better (my roomates can open a can of peanut butter without fear of killing me :-P). I can finally act like a normal 20 year old. I haven't gone into a severe attack since September. However, I haven't noticed a decrease in my lung infections like the individual above and, I think because of this, I still use my fast-acting inhaler about 3-4 times a week.
However, if you don't think the risk is worth the benefit I'd suggest swimming.  It's hard to get myself up to the point I want to be at when I work out. Furthermore, I can't run or do much excercise out of water without going into an attack, and illness sets me back. However, swimming forces me to regulate my breathing which has increased my lung capacity and strenth to the point where I can control my attacks (even those I have which don't respond well to my inhaler). Also, I can't run a mile without going into an asthma attack, but I can swim twice that because of the regulation the strokes provide. Also, I can easily reduce my speed or do an easier stroke when I am sick or getting over something.
It's definately hard to work yourself up to a good point, but it's easy on your body if you're not used to working out and great for your asthma. Good luck.

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 3/6/2008 12:55 AM (GMT -6)   
I think Xolair is a great asthma medication.  I am 57 years old and have only had asthma for about six years.  I think I have been on Xolair for 4-5 years.  I have only had one ER visit several years ago because I tried to do some heavy duty house cleaning, which I just can't do.  That's the only ER visit I have had and no in-patient hospital stays.  If you have severe asthma, I would highly recommend you talking to your physician about Xolair.  Yes, it is very expensive, but insurance companies are choosing to pay for Xolair versus all the ER visits and in-patient hospitals visits.  In the long run, it is cheaper for them.
 
Take care,
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus


Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1937
   Posted 3/6/2008 7:42 AM (GMT -6)   
I found you have to be militant with all doctors and PLUSGIRL you are on the right track. I have post shingles pain and used the word allergic, super-sensitive, etc. because of my reactions to medicine. The neurologist finally got it and accepted my situation and gave me a script for a lower dose of medicine.

Glad there is a new asthma medicine out there to help.
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