Re: New Member Introduction and First Shot

[Guest guest]

Hi Lynn, welcome!!! Your history is very similar to parts of my

history. I am both a patient and a physician and had allergic fungal

sinusitis (AFS) some years ago in my maxillary sinuses (as you

probably know, those are the big ones in the cheekbones) and it was

miserable in all the ways you describe. However, my private community

ENT doc had previously referred me to the Universitiy of Miami School

of Medicine for treatment of frequent severe bacterial sinus

infections so I was already under their care by the time I developed

the AFS.

I was put on high-dose prednisone, which treated the symptoms very

well and pretty quickly, and then had sinus surgery. I had already had

Caldwell-Luc surgery - an older type of maxillary sinus surgery that

was done before the days of endoscopic sinus surgery - so my sinuses

were pretty well opened up but they went back in and basically scraped

out the sinus lining again and also took some small biopsies of the

adjacent bone beneath the sinus lining to check for invasive infection

of the bone. Although this sounds like fairly drastic surgery, it did

cure the AFS and I was able to go off the prednisone. Luckily, the

fungal infection had not extended into the bone. If it had, I would

have been treated with anti-fungal antibiotics.

So my thoughts are that since you live in Chicago, there should be

fabulous ENTs on the medical school faculty. Instead of accepting your

ENT's plan as the final word, I suggest you call the med school

referral line and make an appointment with a sinus specialist (would

be one or more of the ENTs). There are some down-sides of not having

the lining of your sinuses, but yours is not healthy anyway at this

point and so is not funcioning normally.

Wishing the best for you - Fran

>

> Hi everyone, I wanted to introduce myself after

> quietly listening in on the group for the past couple

> weeks. First thank you all for sharing your

> experiences. It's been very helpful to see

> information on Xolair from some unbiased regular

> people. With all the advertising in the

> pharmaceuticals market these days, it seems every drug

> company would have you believe their drug is the

> miracle answer to everything.

>

> As for introductions, I'm Lynn, 34 years old, native

> to the Chicago suburbs. I'm married to a wonderful

> guy who's very understanding about my health. We'd

> like to start a family sometime soon. We're both

> computer gamers; it's great to have a shared common

> pass-time.

>

> My asthma is moderate, especially compared to what

> some of you have to cope with. Mostly my lungs follow

> my nose. If my sinuses are healthy, my lungs don't

> complain much. If my sinuses get into trouble then I

> get into significant lung issues. I've had 2 sinus

> surgeries for polyps and in my opinion they really

> haven't done much. In both cases, the very first time

> I got the smallest hint of a cold I was right back to

> square one.

>

> My doc and I think my issue is Allergic Fungal

> Sinusitis. At both surgeries, they found significant

> fungal infections deep in my sinuses. Seems the

> anti-fungals don't work very well in the sinuses so

> drainage and airflow are about the only treatment with

> any hope of getting rid of the fungus. Seems gross to

> me... I can't imagine that if I found a big patch of

> fungus under my bathroom sink that any reasonable

> person would expect it to go away by opening the

> cabinet doors and turning on a fan.

>

> So great, I've got a fungal colony reminiscent of the

> Muscinex commercials living behind my cheeks. The fun

> part is that I'm allergic to them (and plenty of other

> things too). So since I'm allergic, the lining of my

> sinuses get all inflamed, make polyps and seal up any

> hope for the drainage and airflow. That in turn makes

> a great environment for the fungus, they're all happy

> and I'm miserable; vicious circle.

>

> My asthma has been getting more reactive to flare ups

> in my sinuses. About 2 months ago I was waking up in

> the middle of the night with coughing fits so bad it

> was making me throw up. About 3-4 weeks ago my doc

> mentioned Xolair and said that in 2 other patients who

> have allergic fungal sinusitis that it was helpful in

> breaking that vicious cycle. It sounds like it may

> make the sinuses behave as well, which would be

> -wonderful- if it did. I'm so tired of not being able

> to taste or smell most of the time.

>

> I also get migraines and I've heard a few people say

> that their allergies were a major trigger for their

> migraines. I'm lucky that a dose of Imitrex, an ice

> pack and an hour nap usually works wonders for me, but

> wow would it be a nice fringe benefit if Xolair's

> effects helped me get fewer. I'd be interested to

> hear if anyone else gets migraines and if you noticed

> any difference.

>

> I'm the type that likes to be very educated about my

> health issues. I'm really hoping that Xolair works

> for me. I've been consciously telling myself not to

> " put all my eggs in the Xolair basket " . Once I'd

> decided to go ahead with it and found out that my

> insurance would cover most of it, I really started

> anticipating getting started. I started thinking to

> myself how nice it would be to -insert long list of

> things here-. I'm hopeful but it's actually been a

> wakeup call about how not normal my life has become.

>

> So after all the insurance calls, working with the

> pharmacy, docs office, loads of research, etc -- today

> was my first shot. I'm on 300mg every 2 weeks. I've

> had allergy shots before and this seemed very similar

> except that it took a lot longer for the medicine to

> go in with the Xolair. There was no beam of light

> that magically came and took all my symptoms away;

> drat but ya can't blame a gal for dreaming!

>

> It seems I've written more than a simple hello, so

> maybe next time I'm tempted to write a lot I'll put a

> cliffs note summary up top for those that don't have

> much time. I'm looking forward to getting to know you

> all better and most of all hoping that sometime soon

> I'll be able to tell my experience with Xolair giving

> me my life back. Thanks for listening!

>

>

>

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