Anyone tried Xolair?

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I had a major asthma flare last winter. I was on tons of meRAB and had a lot of problems getting it back under control. Since January, my ENT has been working to get me approved for Xolair treatment. It isn't covered by insurance and is very expensive. Beyond what I could ever afford.

I found out today that I've been approved for some foundational assistance for the Xolair. I'm curious now if anyone has tried Xolair. If so what was your experience? How often did you go in for shots? Has it helped at all?

My asthma is fine now, but I have major fall and winter triggers and would love to prevent them for next year. I'd also love to get off of some of my other asthma meRAB.

Any input would be appreciated.
 
Glad to hear Xolair is now an option for you. I decided to go on Xolair in January after weeks of indecision due to possible side effects and the FDA concern about heart issues. Encouragement from my doctor & advise that Xolair was the only option to avoid future prednisone were the deciding factors for me.

Starting mid January, I get Xolair shots every other week. I've had no reactions and no asthma problems since then. From Aug to Dec last year I had my worst and longest asthma problems ever. I finally got off prednisone in early Feb. My doctor believes the Xolair is working because she says patients usually encounter asthma flareups after ending long term prednisone use. I'm not sure whether it's the Xolair, Syrabicort, or the fact that my history is no asthma problems for 6-18 months and then a major attack. In any event I'm really glad my asthma's been under control this year and I'm finally off prednisone.

It takes about 1 hour in the doctors office to get the Xolair shots (2.5 hours for the first one). Because the Xolair has such a short shelf life after it is mixed in the doctors office, they don't mix it until I arrive and then it must "settle" for 20 minutes before they can give it to me. I actually get 3 injections each visit because of the volume prescribed for me - it's based on your IgE level (mine was 400) and your weight. The Xolair is a thick solution so each needle is in my arm for 30 seconRAB while they push the solution in - the worst part is trying to stay still when you know there's a needle sticking in your arm, but it's not that bad and it doesn't hurt. After the injections, I have to wait 30 minutes to make sure there's no reaction - I haven't had any. For the 1st 2 months I carried an EPIpen everywhere, but then discontinued that practice since there was never any sign of a problem.

I've had face flushing this year after a shower and the doctor hasn't determined the cause. She doesn't believe it's Xolair although it coincidentally began around the time Xolair shots began. Numerous tests have still not revealed the cause.

My insurance pays all but $150/month, and Genentec/Novartis (mfg of Xolair) pay $120 of that for the 1st year. I also pay a doctor's office visit for the injections.

I wish I could report more definitive results, but at least I haven't had any reactions or asthma problems. Let me know if there are any other questions you have about my experience with Xolair & I'd be happy to try to answer them.

Ron
 
Thanks for the detail Ron. My paperwork went in last week to the foundation and they should be in contact with my doctor for my prescription any day now. I'm sure I'll get more of the details you just explained once the prescription is sent out.

I don't mind the wait, but the logistics will be a pain. My allergy clinic is small and only open for shots two mornings a week for 1 1/2 hours and two afternoons a week for 1 1/2 hours. It is tough taking off work so often for my immunotherapy shots. Luckly, I've been on those long enough that they don't make me wait around if I have my Epi-pen. I'll be alternating my immunotherapy one week and the Xolair the next.

I don't know my dosage yet, but I doubt it is at your level. My Ig-E has significantly improved after a couple years of immunotherapy. It is still well into the qualifying range for the Xolair though.

Glad to hear of your success. While I know it may take a while to really be effective, I have high hopes. I had out of control asthma from Noveraber-February this past year. Really affects quality of life when it happens like that.

Thanks again,
MountainReader
 
I tried Xolair for over a year with no significant change in my symptoms. My new pulmonologist is not convinced it helps so we're going without it now.

I use singulair, advair, and flonase, and when I have flares, I use prednisone.

Good luck if you try to go ahead with it, many people find it very effective.
 
I'm getting Xoliar shots every two weeks, two a shot in each arm. I haven't had any asthma flares, however I still have to take advir twice a day Zyflo which is also for asthma and nasonex.....So, I'm not sure if it works or not. I still occassionally have to get a prescription for prednisone if my allergies get to bad. So I don't know. Good Luck!
 
Yes, I have been on Xolair for two years. Since that time I have been on prednisone once. So, it has made a difference for me. Still on advair and singulair. And now thinking of stopping the Xolair because...welll...not sure if I need it anymore...
 
Im On xolair as of a year now! I do not have to use inhalers anymore and Im down to useing my nebulizer 3 times a week! Xolair is an amazing drug! I Highly recommend it!
 
I get Xolair shots 2x a month or every two weeks. It works. I no longer use my inhaler unless its an emotional issue or habitual or if I go in and out of the cold multiple times. Most of my inhaler use I know is habitual or comforting so I've been working on that. I've been on inhalers for over thirty years! Anyway now I don't need the inhaler at all, physically. I am off all of my meRAB. I was on prednisone at least once a month for flare up. I am off daily singulair and advair and inhaler. I've had zero side effects. Only problem has been with insurance harrassment which has delayed shots for a, guess what, another referral. My goal is to scuba dive and start jogging. I've been on the xolair for a little over 6 months.
 
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