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Xolair/Asthma
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stevedi posted:
I started working a new job in Sept., 2013. In October I started with breathing problems that gradually got more severe. I have been asthmatic all my life but it's been controlled with routine asthma meds i.e. Advair 100/50, Singulair and an occasional (once/year) dose of prednisone.

Now I am on Symbicort, Flovent, Spiriva, Fluticasone, 35 mg prednisone, albuterol (nebulizer and rescue). The onset and severity was so sudden and acute that it is almost surreal.

I will have questions about Xolair but for now the questions are around my workplace since that seems to be the only thing that has changed in my life. They have conducted CO, CO2, and mold tests at my office. All results have been negative. There are other people getting sick but their's seems to be manifested in sinus headache, watery eyes etc. My reaction about 3 weeks ago sent me to the Emergency Room and required an overnight stay in the hospital.

They are willing to test for other things but they and I don't know what that could be. Does anyone have any guidance and/or resource which might give a clue as to what I've been exposed to? The doctors can't do allergy skin tests on me because they are ineffective with people taking oral steroids. But blood tests showed that I am NOT allergic to the standard pollen and molds yet my IGE test score was 979 (normal is less than 100). I'm told that is an indication that I've had an acute reaction to something I've inhaled but they don't know what.

As far as Xolair goes - once a person starts on it, if they get better, can a person stop taking it at some point?

I'm really in a quandary as to what my next steps should be and would appreciate any insight anyone can offer. Thanks.

Steve
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deluxehd responded:
Hi Steve,
I am sorry for your health issues. Unfortunately I relate all too well. I developed severe asthma after starting a new job in May 2007. In June 2008 they started remodeling that sent my asthma and health into a downward spiral. In Octoer of 2013 I was finally diagnosed with mold illness (not an allergy) and have started treatment and shown improvement.


There is another test that should be done: ERMI (Environmental Relative Moldiness Index). Check out www.survivingmold.com You will find a lot of useful information there. You may also contact me at: debneric@ptd.net


Good luck and I hope you feel better.
 
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stevedi replied to deluxehd's response:
Thanks for your reply. Unfortunately since writing my initial question, I had another asthma attack which required me to be intubated and again admitted into the hospital for a few days. I think because of my IGE results, the doctors are saying that it IS an allergic reaction. As you can imagine, the situation has become desperate for me and I don't know where to turn at this point. I feel pretty helpless.
 
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deluxehd replied to stevedi's response:
Stevedi, Sorry to hear of your recent attack and hospital stay. When I was first exposed to the moldy building I to had severe asthma attacks, fortunate for me I didn't need incubation. Please look into doing the ERMI or HERTSME2 mold test at your work especially if they are willing to help and/or recognize a problem. It took 5 1/2 years for me to be properly diagnosed. I saw many doctors and some at major hospitals with no explanation for my reactions to: foods, environmental triggers, clothing, plastics, latex, woods, metals, etc. Not trying to scare you but if you have mold illness and it is not treated in a timely manner it can cause even more damage. I developed a latex allergy that I will always have, I can only eat 12 foods without having an asthma attack and the doctor said I only have a 5% chance of gaining foods back. The doctor said I should lose my other sensitivities.


Please take the first step and make sure your work environment is safe. Good luck.
Debbie
 
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stevedi replied to deluxehd's response:
Debbie:

Thanks so much for getting back to me. As you can imagine my situation has gotten very desperate. They have run additional mold tests but I suspect they are for the typical molds. If the results still come back negative, I will suggest these additional tests although I don't know if they will agree to do them.

Steve
 
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deluxehd replied to stevedi's response:
That is just terrible. The ERMI test costs close to $300 and HERTSME2 test is about $150. You can call Mycometrics for more information and they are the ones that will send you a kit with instructions. You then mail the sample back to them for analysis. 732-355-9018. http://www.mycometrics.com/ .


Dr. Shoemaker does phone consultations but does not see patients in his office anymore. I had phone consults with him and he recommended testing and treatment that my family doctor ordered and prescribed.


I may be coming off a little to forward but if I can keep someone from suffering the way I did, then I will be forward.


Good luck and feel better.
Debbie
 
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stevedi replied to deluxehd's response:
Debbie:

Not forward at all. I'm grasping at straws at this point and trying my best to get through this. I have an appointment with the Lung Center at Temple Hospital and hoping that they come up with something to help me. I'm pretty desperate at this point. Thanks for your compassion. I'm sure you can relate to what I'm going through.

Steve
 
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deluxehd replied to stevedi's response:
Good luck and please keep me posted. Thanks.
 
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jayh82 responded:
Hi Steve, sorry to hear about your health issues. It sounds like you may be allergic to something in your new work place. Have you thought about recommending it to your employer to use an air purifier in the office? That is what we did and it worked for me. Here is a link I used for research on air purifiers which explains everything very well. http://www.allergycosmos.co.uk/air-purifiers/
 
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stevedi replied to jayh82's response:
Thank you very much. I will check it out.

Steve
 
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christgirl1963 replied to stevedi's response:
try xolair. it blocks the histamines in your blood system. it works GOD BLESS
 
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stevedi replied to christgirl1963's response:
Thanks for the input. Since I was last on this blog, I actually had a couple of severe issues. I was admitted to the hospital twice through the ER. The second time I had to be intubated. Since then I have managed to limit my time in the office and have gotten better, but still can't seem to get off of the oral steroids which is causing other problems - so far only minor ones.

Until a couple of days ago, Xolair didn't seem like an option because of the cost - $1200/month, and that's with coverage from my medical insurance. But a couple of days ago, my doctor told me that I may be able to get it free of charge. I'm waiting to hear back from the Dr. and hopefully get started on it. I've heard good things about Xolair.

Again, thanks for the positive feedback. It helps!
 
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jayh82 replied to stevedi's response:
Hey Steve just thought I would drop by and ask how things are with you, whether your're breathing difficulties have stopped? Hope all is good with yourself.
 
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stevedi replied to jayh82's response:
Hi Debbie:

Well, I have managed to stay out of the hospital since my last admittance through the ER on April 3, 2014. I have improved somewhat but I think the primary reason is that I go into the office very infrequently. I'm still taking prednisone and continue to cycle up and down in the hope that at some point I can get off of it.

I had been trying for awhile to get approved for Xolair but the best that insurance could do was $1200/month out of pocket which wasn't a financial option for me. After a fairly lengthy appeal process, the Xolair company is providing the medication to me free of charge. I have had two treatments so far with no change in my condition. But it's early in the treatment and I'm hopeful this will be the answer for me. I've heard lots of good things about the drug.

Thanks for your interest. It's nice to hear from other people who can relate to my situation.

Steve


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