still suffering

[Guest guest]

Hi All,

I haven't been on here in awhile, and just wondering how everyone is

doing? I am still suffering with Sampters. Now, I just found out that

I could have igA immune deficiency. Has anyone heard of this, and is

it common in people with Samters? I went to an ENT the other day, and

he said my nose is covered in infection and polyps and that he can

not even see in my nose. So he put me on Levaquin 500mg (which won't

help) and Medrol dosepak (which will only work for a few months.) He

said I am the worse case he has ever seen. And was just going on and

on about how rare Sampters is. This is basically the response I get

from most doctors I see. I am going to see another doctor soon whom

is a director of Research at UMDNJ in Newark, NJ. Hopefully he can

help. I am also considering ASA desensitization. Does anyone else get

extremely nauseous because of severe sinus infections? I can't take

feeling so nauseous all the time.

Jen

[Guest guest]

Jen: I am a physician with Samter's and also an auto immune vasculitis. I understand how miserable you are. I disagree with your doc- Sampter's is not that rare. Let me give you my advice from experience as well as from a physician well versed in this area.First of all I HIGHLY recommend ASA desensitization. I think It is about the only "cure" /treatment for this. This process works best when the polyps have been cleared as with a recent polypectomy. The steroids won't hurt either. Yes, I also get nauseated with severe sinusitis however I think sometimes the infection triggers a migraine as well and this causes my nausea. God Bless. Carolsamsmom22002 <samsmom22002@...> wrote:

Hi All,I haven't been on here in awhile, and just wondering how everyone is doing? I am still suffering with Sampters. Now, I just found out that I could have igA immune deficiency. Has anyone heard of this, and is it common in people with Samters? I went to an ENT the other day, and he said my nose is covered in infection and polyps and that he can not even see in my nose. So he put me on Levaquin 500mg (which won't help) and Medrol dosepak (which will only work for a few months.) He said I am the worse case he has ever seen. And was just going on and on about how rare Sampters is. This is basically the response I get from most doctors I see. I am going to see another doctor soon whom is a director of Research at UMDNJ in Newark, NJ. Hopefully he can help. I am also considering ASA desensitization. Does anyone else get

extremely nauseous because of severe sinus infections? I can't take feeling so nauseous all the time. Jen

[Guest guest]

Hi Jen,

What else have you tried for the polyps? Singulair? Nose sprays?

(After surgery, that is). I was told once that I was the worst case

my doctor had ever seen as well. I hate hearing things like that.

It's so insensitive, doesn't make you feel BETTER, that's for sure.

Who is your doc? someone in New Jersey or New York?

I really like my surgeon, he is in New York and has offices in

Englewood and other places in New Jersey. Also there is a doctor

someone on the list told me about who has people come to him from all

over who sort of " specializes " in Samters -- he is also in New Jersey

and in Rockland County, New York. Email me off list if you're

interested in knowing more about these docs. lori at truelori.com

I did find the aspirin desensitization helpful, although I am not

currently desensitized.

I haven't heard of IgA deficiency. Maybe someone else here has.

Good luck

Lori

> Hi All,

>

> I haven't been on here in awhile, and just wondering how everyone

is

> doing? I am still suffering with Sampters. Now, I just found out

that

> I could have igA immune deficiency. Has anyone heard of this, and

is

> it common in people with Samters? I went to an ENT the other day,

and

> he said my nose is covered in infection and polyps and that he can

> not even see in my nose. So he put me on Levaquin 500mg (which

won't

> help) and Medrol dosepak (which will only work for a few months.)

He

> said I am the worse case he has ever seen. And was just going on

and

> on about how rare Sampters is. This is basically the response I get

> from most doctors I see. I am going to see another doctor soon whom

> is a director of Research at UMDNJ in Newark, NJ. Hopefully he can

> help. I am also considering ASA desensitization. Does anyone else

get

> extremely nauseous because of severe sinus infections? I can't take

> feeling so nauseous all the time.

>

>

> Jen