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> From: " lleizear " <linda.leizear@...>

> Date: Fri, 12 Dec 2003 21:08:08 -0000

> samters

> Subject: Reading Old Posts

>

> Since I'm a newcomer to this group, I've gone back to the beginning

> of the website and am reading all the postings from the beginning.

> I'm up to #152 (out of over 2,000)!

, good for you!. So many people come here and start asking basic

questions before they look at all the info that has accumulated over the

last 2 years. Be sure to look in the FILES and LINKS section also.

And, be sure to add your personal info the the DATABASE section.

> I have a couple of observations and questions:

>

> It seems that several people were exposed to high levels of dust or

> old buildings before the onset of their Samters. I, too, had a

> similar experience. My husband and I were tearing down plaster walls

> in a very old house and I was getting all kinds of crud in my sinuses

> every day for about a month. It wasn't long after this that I began

> having the vasomotor rhinitis, which led to asthma, and eventually to

> aspirin and NSAID intolerance. So I think there may be something to

> that

There have been posting here about dust and dust mites.

As it turns out, dust mites are the one thing that my allergiest has

definitely identified as an issue for me, and I do take shots for it.

My allergist, bless him, never tested me for ASA intolerance -- I had to

tell HIM that I had sensitivity to aspirin.

> I also noted a couple of you saying something about being on a

> diet and feeling better, and I'm taking that two ways: first, it

> could be that the troublesome foods that aggrivated the asthma were

> cut out of the diet; but also, a general reduction of fatty tissue

> may alleviate symptoms. I've wondered this myself. I weighed 165 a

> couple of years ago and lost 20 pounds. I felt MUCH better - both in

> ability to breathe and fewer occurences of wheezing. And I've read

> that when you're overweight, there's a lot of fat that you DON'T

> see. I would imagine that that would not only make airways smaller,

> but there's probably something bad happening circulation-wise all

> over our bodies. I'm trying to lose another 20 pounds to get to

> where I'm supposed to be and I'm anxious to see if I feel even

> better.

It never hurts to be at the right weight.

> I also have an elevated ANA (anti-nuclear antibody) count in

> my blood. They check me every 6 months to make sure I'm not coming

> down with Lupus. That's also immune-system related, so I'm wondering

> if there's a connection. Anyone else have a high ANA count? I saw

> the suggestion in some of the links that Vitamin E and Cod Liver Oil

> may help boost the immune system. What do you all know about this?

> Finally, I also only get my sense of smell back when taking

> Prednisone. Can anyone explain to me why we can't smell things? Is

> something blocking the olfactory cells, or what? Does the Prednisone

> reduce the swelling so that they are uncovered and useful? Then why

> doesn't surgery cure it? So many have said the surgery removing

> polyps did NOT get their sense of smell to return.

I don't know the answer about Prednisone, but your experience is common --

Prednisone is the ONLY thing for some people that is guaranteed to restore

the sense of smell. I'm starting my Christmas regime next week.

You'll see in the posts that surgery works for a lot of people, but the

polyps return very quickly -- it seems clear that they return more quickly

for Samterites than for " normal " people.

>

> Thanks for all the good info! This is really exciting to find all

> this information and understanding.

Many people, including myself, have learned more about Samters through this

group than from any MD.

>

Ken West

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  • 6 years later...

If it's any comfort I've found the longer I stay on Xolair the better it

works.  The next time I see my pulmonologist I'm going to ask him if I can

reduce my Advair 500 to 250.  There are plenty of times I forget to take it and

I don't feel any worse.  I hope your experience is as good as mine.  Hang in

there and best of luck.

From: mpink1000 <mpink@...>

Subject: [ ] reading old posts

Date: Wednesday, November 10, 2010, 9:47 PM

 

I've been going through the posts from the first couple of years. What a fun way

to pass the time when you are " grounded " inside from an asthma flareup. I felt

like I got to know Doug, Addy, Greg, Joyce, and many others better.

These guys chatted back and forth like family sharing their good and bad days.

They discussed their reactions, strange symptons, doseages, insurance - good

educational stuff as well as fun stuff. Much better than daytime TV. Thanks!

Marilyn PS Had my second shot almost two weeks ago. Much better this time, not

scared but still had trouble sleeping that first night. Kinda feels like when

you are on steriods and you get too pumped up to relax. Maybe the third time

will be the charm, and no symptoms at all!

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Thanks,. How long have you been taking Xolair? I hope, in time, that I can

get to that same comfort zone you are in. Next week is my 3rd dose, I can hardly

wait. I started out afraid and now I am so glad to have this opportunity. Here

in Phoenix, the winter people are flocking in (don't blame them) so our poor air

quality just gets worse. I am hoping to be able to go outside again by Spring,

what a wonderful gift that would be! Marilyn

>

>

> From: mpink1000 <mpink@...>

> Subject: [ ] reading old posts

>

> Date: Wednesday, November 10, 2010, 9:47 PM

>

>

>  

>

>

>

> I've been going through the posts from the first couple of years. What a fun

way to pass the time when you are " grounded " inside from an asthma flareup. I

felt like I got to know Doug, Addy, Greg, Joyce, and many others better.

These guys chatted back and forth like family sharing their good and bad days.

They discussed their reactions, strange symptons, doseages, insurance - good

educational stuff as well as fun stuff. Much better than daytime TV. Thanks!

Marilyn PS Had my second shot almost two weeks ago. Much better this time, not

scared but still had trouble sleeping that first night. Kinda feels like when

you are on steriods and you get too pumped up to relax. Maybe the third time

will be the charm, and no symptoms at all!

>

>

>

>

>

>

>

>

>

>

>

>

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