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  • No drugs are working to help severe asthma

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    Old 10-10-2011, 08:58 AM   #1
    jlh29
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    No drugs are working to help severe asthma

    PLEASE HELP!!! I would love ANY input from anyone who may have suffered anything similar...at my wit's end with my asthma. 9 weeks ago, I had a severe allergic reaction to some bleach and cleaning agents I used in my vehicle. I was rushed to the hospital via ambulance, they thought I had anxiety(!!) but it was my asthma. I've had asthma since age 5, but always exercise induced/cold induced or exposure to environmental triggers. I have severe allergies, allergic to everything that grows - all seasons, unfortunately, animals and certain foods. Normally, i've always been controlled through singulair, advair (500/50) and allergy meds.
    Since this reaction in August, I have been to the ER 10 times, admitted once for 4 days and been under care of a pulmonologist. I've used prednisone since August 6th, with dosages as high as 120 mg. As a result, my body reacted to the prednisone by becoming pre-diabetic, EXTREME fatigue and due to using my nebulizer/albuterol every 2-4 hours my potassium levels have dropped here and there. The prednisone HAS NOT worked, where it always has in the past, on short spurts. My pulmonologist has been weaning me off the prednisone as it's not working anyway and wreaking havoc on my body.
    I have had to continue to use my nebulizer every 2-4 hours, remain in 'safe', 'controlled' environments, where my allergens are limited. I am triggered by smoke, perfumes, cleaners, EVERYTHING it seems...and now I've developed a sensitivity to SOY, where my throat recently closed up and I had to use my epi-pen. I feel like I should be in a bubble!
    My peak flow readings now run between 50%-75% of my personal best, all the time, but yet even when I'm having asthma symptoms, feeling tightness, needing a treatment, my peak flows read that 50-75%...which puzzles me. The ER thinks I'm fine b/c my O2 sats are 95-98% and my wheezing is minimal, yet I feel like I can barely breathe. I cannot even read my daughter a bedtime story or get through a sentence without becoming winded. I am a RUNNER normally, I work out all the time, but the last few months have rendered me unable to walk to my CAR without becoming winded. HELP!!!
    I am in process of becoming approved for Xolair, my IgE levels are 892, but it's a slow process. Any suggestions? I am a 36 year old active female who feels like I have a 90 yr old woman's lungs/body. Most of the medical professionals make me feel like there is nothing more they can do or that I'm making it up or have anxiety - NOT THE CASE! HELP!!!

     
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    Old 10-13-2011, 05:57 AM   #2
    angel53
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    Re: No drugs are working to help severe asthma

    Thank You for the post! It felt like I was reading everything going on in my life. I have Allergy induced Asthma to everything. I am on allergy shots. I put Vicks (not sure if I'm allowed to put this) in my nose the outside and it helps cut down some off the problems. My Doctor told me one time (with a smile) he needed to ship me out in the middle of the ocean. I hope they find something to help you. Thank You again for the Post and Hugs.

     
    Old 10-13-2011, 06:20 AM   #3
    jlh29
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    Re: No drugs are working to help severe asthma

    Angel53, Thank YOU for posting in reply - it's nice to have someone who understands, though I'm sorry you are suffering as well. I know my dr's have all joked that they want to put me in a bubble...sometimes I honestly wish they would! I hope they find answers for BOTH of us so we can re-enter the world of 'normalcy'!! Big hugs to you as well. I saw an allergist yesterday who is trying to switch ALL my meds in hopes it will make a difference. Crossing fingers...hang in there!

     
    Old 10-13-2011, 05:28 PM   #4
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    Re: No drugs are working to help severe asthma

    Hi, welcome to the board. I'm sorry you are having such a difficult time! Part of it could be that the exceptionally wet weather in the NE has allowed the mold spores to get crazy out of control.

    High pulse ox does NOT me you aren't having an asthma attack. If you are fit, with strong lungs to begin with, you can be red zone and severely restricted and still have enough oxygen in your blood. If you are at 50% of your personal best peak flow, that's a problem.

    The Xolair probably will help once you get it, but you might have to harass the insurance company a lot. Hopefully someone in your allergist's office has experience in fighting for Xolair approvals.

     
    Old 01-21-2012, 09:54 AM   #5
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    Re: No drugs are working to help severe asthma

    I suddenly got my asthma severely triggered by a neigbhor's wood burning stove, now all kinds of things trigger it and I have to stay in my room much of the time. I was on prednisone for 4 months this year and then had to get off because I don't want to destroy my body! I called National Jewish Rose Medical Center in Denver, #1 in the world for asthma treatment, they recommended Xolair. That should do the trick. But I can't afford the shot as our health insurance doesn't cover it. Good luck to you. Also, try anti anxiety meds just to calm yourself down. They say to me sometimes they can't hear wheezing and my 02 Sat is good but I know I'm struggling. Anti anxiety, just a little xanax now and then, even a glass of white wine, will help you calm down and stay off the meds.

     
    Old 01-21-2012, 07:19 PM   #6
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    Re: No drugs are working to help severe asthma

    Azuremountain,

    My physician fought insurance for about 6 months before connecting me to a resource that would help with my Xolair. If you continue to need the Xolair, you might want to contact, the makers of Xolair. They have a foundation to help people who can't afford treatment. You will need to have your physician provide some of your test results and verify you have need or the Xolair. You will also need to provide a copy of your latest taxes as well to prove you can't afford it.

    I'm in my second year sponsored by them and Xolair has done WONDERS for me. I was able to go 15 months off of the Xolair. I had to go on a short 5 day burst a couple months ago when we had a seriously bad inversion here, but otherwise, I've done well. I've gone from being on 4 asthma meds to just one. I've also been able to go off of some of my allergy meds as well.

    For me the Xolair has been worth it.
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