to wkapikorn

[Guest guest]

Sorry for your frustration on this -- I think part of your

frustration can be explained by the fact that we seem to be variable

in this regard. Here is what I have found helpful, maybe others can

post their helpful regimens.

First, aspirin densensitization helped me the most of any single

thing I ever did, and I was on it for seven years from 1995 to 2002.

Went off for reasons unrelated to Samter's.

Surgery did not help me very much, although I have had many

surgeries. Some people find it helpful. In my case my current ENT

thinks having had surgery made everything worse for me in the long

run due to extensive scar tissue and surgical remodeling of the

sinuses including the Caldwell-Luc procedure, which is now out of

favor among ENTs.

Dietary: I cut out all red meats. Some say this doesn't help. It

helped me a lot in terms of inflamamation in general and Samter's

specifically. I cut down on meat intake in general except for some

fish. I do not drink milk. I sometimes splurge on ice cream but,

yes, it does worsen my symptoms (asthma and sinus), as does cheese,

with an incremental worsening depending upon the fat content of the

cheese.

I cut out all alcohol. This gave another huge incremental benefit to

me. This was only evident AFTER doing the above things, but after I

did it became clear I was having flare-ups whenever I drank alcohol.

I tried to lower my salicylate intake (I think it may be near

impossible to eliminate them entirely). I never found any benefit to

this, some people are sensitive to salicylates like mints, etc, and

notice a benefit in reducing salicylate intake.

I irrigate my sinuses with a neti pot every day and find this very

helpful.

My medications:

Advair 500/50 twice a day

Singulair 20-30 milligrams a day (this is a leukotriene modifier)

Nasonex

I try to exercise regularly, and I find this helps, although

sometimes I get a brief flare-up of symptoms after exercising

intensely, sinus symptoms in particular. Walking and swimming seem

to be good exercises for me in terms of the Samter's.

I am pretty stable on those medications and this regimen. I still

have flare-ups, but usually not requiring oral steroids. I still

have polyps and a ton of scar tissue from previous surgeries, but if

I can breathe through my nose I am relatively happy. Most of the

time I don't have a sense of smell. Most of the time I sound

congested to others even when I don't feel congested (and I hate

that).

In 1995 before aspirin desensitization my doctors and I thought I

would eventually die of the disease. Now I have a pretty close to

normal life, except for fatigue and other symptoms unrelated to

Samter's.

I also try (not always successfully) to eat healthy diet in general,

although it's hard because I do have some food sensitivities as well

as an admitted sweet tooth. I do not know whether this affects the

Samters, but I think anything that improves our general health can

help with the Samter's although it may not be readiy apparent.

Of note: during chemotherapy for cancer, twice, I have needed NO

medications for Samter's symptoms. Unfortunately I gained a lot of

weight on chemo both times, and I think weight reduction is helpful

in Samter's and asthma.

I hope this is helpful. It is very individualized person to person.

Lori