Re: Tried, but still determined -- Steroid Warning Network

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Date Posted: 19:27:10 11/01/06 Wed
Author: becki (thinking)
Subject: Re: Tried, but still determined
In reply to: Sharon 's message, "Re: Tried, but still determined" on 16:47:51 11/01/06 Wed

>>Hi everyone...you were all so terrific at answering my
>>questions and supporting me a couple of months ago in
>>my determination to wean off pred after almost 6 years
>>of at least 5mg per day and sometimes more than that.
>>I have severe asthma and was first put on steroids in
>>the 1980's, high doses with hospital emergencies and
>>every time I got a cold or bronchitis. Six years ago,
>>my wheezing became "different" and daily. Found out
>>just this year that part of the problem is acid reflux
>>disorder as I wheeze in my throat! However, all the
>>docs I see disagree with each other on primary
>>diagnosis. I am on inhaler, theophylline and have a
>>nebulizer (daily use). All I have ever heard is that
>>pred is the only answer and I might have to be on it
>>all my life. But, as you all know, it has screwed up
>>my body big time and the side effects are horrendous.
>>So, I made up my mind to wean with primary doc's
>>knowledge (though he has a lot to learn)...and was
>>able to wean down from 5 mg. to 4 mg. for two and a
>>half months. But had a bad stretch a couple of weeks
>>ago (was under extraordinary stress, plus allergies,
>>plus who-knows-what triggered an "almost" emergency
>>situation again.)..so the doc says to up to 20 mg and
>>wean down 10 every five days. I CRIED having to
>>increase again and I felt like a failure. I was not
>>doing all that badly on 4 mg. (except for a lot of
>>muscle and arthritis pain) and I was SO PROUD. Then,
>>whammo! I am weaning down by 5 mg. Tomorrow is my
>>last day on 15mg (doing it my way)...and I am
>>determined to get below 5 mg. again. But I would like
>>to know WHY severe asthmatics are offered no kind of
>REPLACEMENT if they do succeed in going off
>pred...just given the same old asthma/allergy stuff
>that doesn't even work any more. Has anyone out there
>gone off pred and found something non-steroidal which
>helps them? (sorry if I messed up sending this message)

Hi
I think I have alot of the same triggers you have. My drs put me on the latest drug out for asthma/allergies. None of the others were working and I can't take steroids again. The drug is Xolair. It is not a steroid or a regular "allergy shot". It binds the IgE protein in your blood so it can't work. The IgE protein is what triggers an allergic reaction. It works for severe allergies and allergic asthma. A normal IgE level is 5 or less. The first time mine was checked it was over 500! I've been on it without interuption since Feb. It is now the only asthma med I use except for my rescue inhalor. it won't help asthma attacks triggered by stress or respiratory infections but it's a start. The drug isn't for everyone. if you are interested talk to your dr. I have had a better result than some other people but everyone is different.I'm going back to work next week for the first time in 3yrs!Good luck.
becki

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