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dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6898
   Posted 12/21/2012 10:30 PM (GMT -6)   
Has anyone here tried Xolair for allergies?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12168
   Posted 12/22/2012 12:08 AM (GMT -6)   
No, but I heard it was the big guns for allergies.
Read up on it on their website. Has some unusual side effects.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6898
   Posted 12/22/2012 12:28 AM (GMT -6)   
Hi Joy,
I've discussed it in detail with two allergy/asthma docs, and after 17 years of allergy shots, I'm ready to give it a try.  I'll be continuing with the shots as well.  I can't go outside during pollen season (which has increased in duration and intensity during the past few years) without getting sick.  I can go out for a few days, but the cumulative effects are debilitating.  Lung mucous, coughing, sinus pressure and PND...I just plain get sick.  I've taken to staying indoors most of the time, and that's not me.  I'm a hiker and an outdoors person.  I've got to at least give it a try.
 
It's extremely expensive, and my insurance denied it.  My allergy/asthma doc filed an appeal, which is still in the works.  The amazing thing is that I qualify for the company's foundation that supplies the drug free of charge.
 
It may not do the trick for me, but I've got to try.  I'm 60 years old, and I'm not going live forever.  If I can get enough relief from Xolair to allow me to go outside again, it's worth the risk.  The Nissen was a risk...I didn't know if it would even work for me--neither did the GI doc or surgeon.  It did work, and now I've got to try this.
 
Wish me luck!
Denise

Steffanie
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/23/2012 1:43 PM (GMT -6)   
Hi Dencha,
I was approved for Xolair about 5 years ago... after spending hundreds of dollars to have the testing done to make sure that the insurance would pay for it, because I was told that it costs thousands of dollars a year to get one monthly injection. It was injection only at that time, I don't know if that has recently changed or not.

Before I spent the money for the testing, i asked my pulmonologist what the side effects were. He told me that I might be more likely to get colds or flu, but that was the main side effect ~ so I went ahead and did the allergy tests and the finding was that I qualified for the medication.

At that point, the physician gave me more info on the medication. One of the first things it said was that several kinds of CANCER, along with being prone to infection were side effects of this medication. This told me that it must severly compromise the immune system. I OPTED NOT TO TAKE IT.

My attitude about the medication vexed the physician. So what?

Later when I suspected that I also have sulphite sensitivity I FINALLY found one allergist in the city who was familiar with it. When I went to him he confirmed that I have sulphite sensitivity along with many food allergies. No surprise. But he also advised me to take Xolair for my severe asthma and allergies. I again refused, and was told that if I didn't improve my breathing I would die from asthma, and need not worry about cancer from Xolair... Hmmm great bedside manner! I still refused it.

Later when I told my GP about the exchange, she said that she did not blame me... she would not have taken it either. And then she told me that Xolair is also known to cause cardiac problems.

I never confirmed what she said about the cardiac problems, because I am firm in not taking the medication because of the compromised immune system. When your immune system is badly compromised you are likely to develop numerous different conditions. Ask yourself if it is worth it...

But I do know from reading the brochure given to me by the doctor who tried to get me to take the Xolair injections that on the brochure the first side effect listed is several types of cancer. They didn't specify, just said several types.

I hope you will rethink your decision to take this medication.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6898
   Posted 12/23/2012 5:22 PM (GMT -6)   
Hi Steffanie,
I've discussed Xolair with three different asthma/allergy docs, and of course in that discussion the cancer studies came up.  According to the research information, oncologists studied the results and concluded that the cancers were unrelated. 
 
My asthma/allergy docs said that the only real risk is if I were to travel somewhere and got parasites, as resistence to parasites is diminished and is a risk.
 
I discussed this with my primary care doctor as well, and since this is something that I've struggled with for a very long time, he's also in favor of giving it a try.  I even had a Nissen fundopliocation surgery to stop reflux that was creating havoc with my asthma.  Still, my allergies keep me in all spring and summer, and I'm willing to take the risk if I'm able to live a more normal life.
 
The first allergy doc who suggested Xolair (and thoroughly warned me as to the risks) quoted St. Thomas of Aquinas:
 

“If the highest aim of a captain were to preserve his ship, he would keep it in port forever.”

 

In other words, there is always a risk, and you have to consider the risk/benefit ratio and decide if for you, it's worth it.  It may not work for me, in which case after a fair trial I'll stop and just face the fact that I'll never be able to enjoy the out of doors.  I'm hopeful, though, that it will work.

 

Is there a risk?  Yes.  But I want to be able to live a normal life...enjoy our screened porch, go hiking, visit with friends, take picnics.  I'm ready to give it a try.  It wasn't the first thing I've tried...17 years of allergy shots, a Nissen fundoplication (which, by the way worked great), antihistimines, staying indoors, being sick all summer and fall.  I've had it, and I'm ready to try Xolair.

 

I appreciate yor very detailed and caring response.  I hope you find relief in whatever method you find fits your needs.  I truly appreciate your concern, and understand your feelings totally.  This isn't the first time I have been considering the Xolair option.  It was first offered before I had my surgery about 6 years ago.  I researched it, shared the research with my PCP, and we both decided to wait until after my surgery and see how things went. 

 

Thanks again, and

Very best wishes! 

Denise


Steffanie
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/23/2012 6:11 PM (GMT -6)   
Best of luck with it, Denise. It seems fairly obvious from the side effects that at the very least the immune system is compromised by this medication ~ but of course you are the best judge as to whether or not an improved quality of life balances out or outweighs the risks involved. I can empathize, as I tend to stay indoors 98% of the time. It would drive most people bonkers ~ and perhaps I am a little crazier because of it! LOL!

Steffanie

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6898
   Posted 12/23/2012 8:17 PM (GMT -6)   
Thanks, Steffanie...
I wish you the best of luck as well!  I hope your asthma is in control and you're doing well.
Best wishes,
Denise

George2014
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/11/2014 1:49 PM (GMT -6)   
hi, something new there about Xolair?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 6898
   Posted 5/11/2014 2:38 PM (GMT -6)   
Hi George2014,

Welcome to Healing Well! I go to the top allergy office in my medium sized city, and my allergist (as well as the one I had prior to moving here), were both very positive about Xolair. My PCP here said that I should trust anything that my allergists recommend, as they are tops in their field, and are known throughout the country for their excellence and knowledge.

I have been on Xolair for two years now, and have had no side effects. I don't have more infections, and when I do get the occasional sinus infection or cold, my lungs are no longer immediately affected. Prior to my Xolair treatment, whenever I had anything like that, my lungs would immediately become involved, and it would take at least a month or two to get them healthy and clear again.

It hasn't eliminated my reaction to pollen completely, but it has definitely improved my condition. As I said in an earlier post, I still get my allergy shots for further protection.

My allergist has assured me that the cancer "risk" is not anything to be concerned about. He said that many oncologists have studied Xolair and the "cancer" that has resulted, and have concluded that any cancer that was developed during treatment was simply coincidental, not causal. People who eat carrots get cancer, too, but the carrots didn't cause it.

When a new drug goes on the market (my allergist explained) every single symptom/health issue must be reported. He told of a drug trial he was involved with. A woman who was taking the drug stubbed her toe during the trial, and he had to report that toe injury.

While it hasn't eliminated my allergy issues completely, it has made a very positive impact.
Best wishes,
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

George2014
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/11/2014 3:12 PM (GMT -6)   
huh, thank you very much for your response.

My problem is cholinergic urticaria (an allergy form when the body heats up, like perspiration, stress, emotions, sport...etc, but high (grown) IGE food too), and i hear it is the posibility to resolve or to calm this effects with Xolair...

Post Edited (George2014) : 5/11/2014 2:21:15 PM (GMT-6)


LV51
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/26/2014 4:31 PM (GMT -6)   
George I totally understand where you are. I am in nearly the same boat. I have been fighting this Urticaria and Angiodema for nearly a year. It started about 2 weeks after my son was born. My wife and I have changed everything from soap, foods and tons of other things. My Allergist has me on zyrtec at night with zantac twice a day and cyclosporine twice a day. I also take a allegra in the morning. She says if I go to Xolair, "the miracle drug" I can drop the others and will be perfect. I wake with a few red spots each day and they go away when I am at work but reappear when I am home for a few hours. They insist it isn't environmental and absolutely refuse to test. They are considered the best in the valley but I for one am not a pill popper and have a hard time getting wanting to take them. I do though thus far.
Each person must evaluate their standing. In the past 14 hours I have had the Dr's office call me and tell me to get the shots and my insurance saying that I need to REALLY talk to the Dr before getting the shots. My mind is made up and I am going to pass on it. That is just me.
A coworker has similar issues and is thinking of the shots but is very much on the fence and leaning towards no as well.
Either way, keep us posted. This is my first post due to this drug.

Duggie
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 6/30/2014 4:29 AM (GMT -6)   
I have been suffering with auto immune chronic hives (not an allergy) for ten years. It started after menopause. In the past few years, prednisone knocked it out, but taking too many steroids isn't good, and it hasn't worked this time. It was in remission for 1.5 years until Feb, so I've been battling the hives for over 4 months now. I take zyrtec, zantac, twice a day, and singulair. I signed the paperwork for zolair, I've heard it's had good results. A study in Spain was quite promising. The "trigger" seems to be after I have been sick with a cold/flu, or UTI ... on or off antibiotics. I also get occasional angioedema which seems not as bad as in the past. Will this "thing" just run its course, or do we really need all these meds? I don't know. Frustrated but optimistic.

Jammyamerica
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 7/2/2014 4:49 AM (GMT -6)   
My allergist has assured me that the cancer "risk" is not anything to be concerned about. He said that many oncologists have studied Xolair and the "cancer" that has resulted, and have concluded that any cancer that was developed during treatment was simply coincidental, not causal. People who eat carrots get cancer, too, but the carrots didn't cause it.

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 86
   Posted 7/27/2014 4:16 AM (GMT -6)   
Hi all

Gosh this brings back bad memoirs, I was on the verge of going down the xolair route and i decided not to. I can't say I have researched it in depths since i was extremely ill with asthma at the time but
found out later it was from reflux acid and not 100% allergy related. Well I assume you have tried all meaner of antihistamines and nasal steroids? how about montelukast?

I have also heard of allergy shots( ie containing the allergen in low doses) given intravenously over several months while increasing the dosage over many months. It seems like a last chance resort bore xolair. It might worth a try for those more seriously affected by allergies, just want to say suffering from allergies is hell. I always controlled my symptoms with cetirazinenH1 blocker but past summer i went through 2 months where nothing was working, not even prednisone being allergic to my sisters dog does not help either. Well the doctors burnt a hole in my stomach with prednisone and lets say allergy was my least worry.

I hope you feel better soon :)
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