My recent experience w/aspirin

[Guest guest]

Hi Everyone,

I just wanted to share my most recent experience with aspirin and a discovery

that came about while being weaned off aspirin leading up to surgery to remove

polyps.

I have been dealing with Samter's for the last 10 years. I was on 1325mg of

aspirin daily along with short and long term rounds of prednisone and had tried

all the rinses, Zyflo, Nasonex, Flonase etc....I had been living on 20mg of

prednisone for the last 3 years straight.

Last September things had gotten so bad for me that even Prednisone would not

give me any relief. I had just moved to SW Florida and was fortunate enough to

find a physician (allergist) that knew exactly what Samter's was and how to deal

with it. Because my CT showed now open space in any of my sinus cavities at all

and all of them were severely infected he referred me to a ENT to schedule

surgery.

I spent from Sept to Dec on major doses of antibiotics to get all of the

infection cleared up. I felt rotten all of the time and my whole body ached

constantly. Surgery was scheduled for the end of February and in December my

allergist began weaning me off the aspirin and the prednisone. As surgery grew

closer and closer I began to see marked improvements in my breathing and also

how I felt overall.

A few things happened with the ENT surgeon who was to do the surgery that really

pissed me off and 3 days before the scheduled surgery, I cancelled it and called

my allergist and asked to be referred to another ENT.

A week later I was sitting with one of the best ENT docs I have dealt with in

all my years of having this frustrating disease. A CT scan in Sept & Dec showed

no open space in any sinus cavity. I had another CT scan in Feb which confirmed

that the polyps were shrinking and space was opening up while I was being weaned

off the aspirin and prednisone. This new ENT informed me that there have been

new studies done in Samter's patients to show that large doses of aspirin and

aspirin desense can actually cause the polpys to be worse, stay completely

swollen and restrict breathing.

Hence why as I was being weaned off the aspirin I was starting to see

improvements and was starting to be able to breathe out of my nose. He suggested

that as long as the asthmatic part of things were under control that we keep

going down the path of taking no aspirin and see how things go.

Currently I am on Zyflo 2 times a day, Nasonex 2 times a day, Singular in the

evening and Dulara 2 times a day. I do not use the saline rinses as that always

made my situation worse. I do not have taste or smell back and he indicates I

probably wont. But to be able to breathe through my nose, get a full nights rest

and not constantly dealing with asthmatic attacks is like a whole new chance at

a semi-normal life.

He also explained to me that large amounts of prednisone over a long period of

time can create what's known as prednisone induced phychosis and this did

explain alot of the mood swings etc...that had been happening over the last few

years. The aspirin has been shown to have a hand in that as well when taken in

large doses and mixed with the prednisone.

Please note that this is all new information, and is to a big degree my doctor's

take on some studies that have been done. It is not " proven " to be true in

everyone who has been desensitized to apirin and who takes large doses daily and

as we all know too well, each of us with Samter's have variying degrees of the

disease and not all things work for all of us. Samter's is so hard to deal with

because it really seems to have no rhyme or reason and things work well for a

while and can change.

I did want to share this experience and say that for me so far so good without

taking the aspirin. I am hoping this continues and I am truly thankful that I

did not have to have another surgery. I do feel like at this point my life has

been dramatically improved. I have started being very cautious of the things I

eat, try to stay with all natural foods, no processed foods, drink only water

and take loads and loads of vitamins and minerals along with visiting a salt

cave to breathe in the salt air (www.saltcave.us) might be one in your area.

Every morning I wake up with an anxious feeling wondering if things are still

going to hold good so that's a bit of a drag but once I am up and see that I

have slept a whole night through breathing through my nose and that I can

breathe through my nose through out the day I am thankful.

I hope this info might give someone else a different option and that it may help

with their situation.

Thanks for listenting.

R

[Guest guest]

Wow, very interesting and complicated. Because aspirin works well for many, I wonder if there is a certain dose that is optimal, or if tapering off over time works best. Or if it is just completely individual Do you know where any of the studies have been published?And why do you think you will never have a sense of smell -- are the receptors destroyed? I don’t really understand the science behind loss of smell when there is no physical blockage.Thanks for such an interesting and informative post.JoanOn Apr 28, 2011, at 1:38 PM, R wrote:

Hi Everyone,

I just wanted to share my most recent experience with aspirin and a discovery that came about while being weaned off aspirin leading up to surgery to remove polyps.

I have been dealing with Samter's for the last 10 years. I was on 1325mg of aspirin daily along with short and long term rounds of prednisone and had tried all the rinses, Zyflo, Nasonex, Flonase etc....I had been living on 20mg of prednisone for the last 3 years straight.

Last September things had gotten so bad for me that even Prednisone would not give me any relief. I had just moved to SW Florida and was fortunate enough to find a physician (allergist) that knew exactly what Samter's was and how to deal with it. Because my CT showed now open space in any of my sinus cavities at all and all of them were severely infected he referred me to a ENT to schedule surgery.

I spent from Sept to Dec on major doses of antibiotics to get all of the infection cleared up. I felt rotten all of the time and my whole body ached constantly. Surgery was scheduled for the end of February and in December my allergist began weaning me off the aspirin and the prednisone. As surgery grew closer and closer I began to see marked improvements in my breathing and also how I felt overall.

A few things happened with the ENT surgeon who was to do the surgery that really pissed me off and 3 days before the scheduled surgery, I cancelled it and called my allergist and asked to be referred to another ENT.

A week later I was sitting with one of the best ENT docs I have dealt with in all my years of having this frustrating disease. A CT scan in Sept & Dec showed no open space in any sinus cavity. I had another CT scan in Feb which confirmed that the polyps were shrinking and space was opening up while I was being weaned off the aspirin and prednisone. This new ENT informed me that there have been new studies done in Samter's patients to show that large doses of aspirin and aspirin desense can actually cause the polpys to be worse, stay completely swollen and restrict breathing.

Hence why as I was being weaned off the aspirin I was starting to see improvements and was starting to be able to breathe out of my nose. He suggested that as long as the asthmatic part of things were under control that we keep going down the path of taking no aspirin and see how things go.

Currently I am on Zyflo 2 times a day, Nasonex 2 times a day, Singular in the evening and Dulara 2 times a day. I do not use the saline rinses as that always made my situation worse. I do not have taste or smell back and he indicates I probably wont. But to be able to breathe through my nose, get a full nights rest and not constantly dealing with asthmatic attacks is like a whole new chance at a semi-normal life.

He also explained to me that large amounts of prednisone over a long period of time can create what's known as prednisone induced phychosis and this did explain alot of the mood swings etc...that had been happening over the last few years. The aspirin has been shown to have a hand in that as well when taken in large doses and mixed with the prednisone.

Please note that this is all new information, and is to a big degree my doctor's take on some studies that have been done. It is not "proven" to be true in everyone who has been desensitized to apirin and who takes large doses daily and as we all know too well, each of us with Samter's have variying degrees of the disease and not all things work for all of us. Samter's is so hard to deal with because it really seems to have no rhyme or reason and things work well for a while and can change.

I did want to share this experience and say that for me so far so good without taking the aspirin. I am hoping this continues and I am truly thankful that I did not have to have another surgery. I do feel like at this point my life has been dramatically improved. I have started being very cautious of the things I eat, try to stay with all natural foods, no processed foods, drink only water and take loads and loads of vitamins and minerals along with visiting a salt cave to breathe in the salt air (www.saltcave.us) might be one in your area. Every morning I wake up with an anxious feeling wondering if things are still going to hold good so that's a bit of a drag but once I am up and see that I have slept a whole night through breathing through my nose and that I can breathe through my nose through out the day I am thankful.

I hope this info might give someone else a different option and that it may help with their situation.

Thanks for listenting.

R

[Guest guest]

Joan,

I will ask my ENT at my next appointment to point me in the direction of where

the studies are published so that I may post on here.

R

>

> > Hi Everyone,

> >

> > I just wanted to share my most recent experience with aspirin and a

discovery that came about while being weaned off aspirin leading up to surgery

to remove polyps.

> >

> > I have been dealing with Samter's for the last 10 years. I was on 1325mg of

aspirin daily along with short and long term rounds of prednisone and had tried

all the rinses, Zyflo, Nasonex, Flonase etc....I had been living on 20mg of

prednisone for the last 3 years straight.

> >

> > Last September things had gotten so bad for me that even Prednisone would

not give me any relief. I had just moved to SW Florida and was fortunate enough

to find a physician (allergist) that knew exactly what Samter's was and how to

deal with it. Because my CT showed now open space in any of my sinus cavities at

all and all of them were severely infected he referred me to a ENT to schedule

surgery.

> >

> > I spent from Sept to Dec on major doses of antibiotics to get all of the

infection cleared up. I felt rotten all of the time and my whole body ached

constantly. Surgery was scheduled for the end of February and in December my

allergist began weaning me off the aspirin and the prednisone. As surgery grew

closer and closer I began to see marked improvements in my breathing and also

how I felt overall.

> >

> > A few things happened with the ENT surgeon who was to do the surgery that

really pissed me off and 3 days before the scheduled surgery, I cancelled it and

called my allergist and asked to be referred to another ENT.

> >

> > A week later I was sitting with one of the best ENT docs I have dealt with

in all my years of having this frustrating disease. A CT scan in Sept & Dec

showed no open space in any sinus cavity. I had another CT scan in Feb which

confirmed that the polyps were shrinking and space was opening up while I was

being weaned off the aspirin and prednisone. This new ENT informed me that there

have been new studies done in Samter's patients to show that large doses of

aspirin and aspirin desense can actually cause the polpys to be worse, stay

completely swollen and restrict breathing.

> >

> > Hence why as I was being weaned off the aspirin I was starting to see

improvements and was starting to be able to breathe out of my nose. He suggested

that as long as the asthmatic part of things were under control that we keep

going down the path of taking no aspirin and see how things go.

> >

> > Currently I am on Zyflo 2 times a day, Nasonex 2 times a day, Singular in

the evening and Dulara 2 times a day. I do not use the saline rinses as that

always made my situation worse. I do not have taste or smell back and he

indicates I probably wont. But to be able to breathe through my nose, get a full

nights rest and not constantly dealing with asthmatic attacks is like a whole

new chance at a semi-normal life.

> >

> > He also explained to me that large amounts of prednisone over a long period

of time can create what's known as prednisone induced phychosis and this did

explain alot of the mood swings etc...that had been happening over the last few

years. The aspirin has been shown to have a hand in that as well when taken in

large doses and mixed with the prednisone.

> >

> > Please note that this is all new information, and is to a big degree my

doctor's take on some studies that have been done. It is not " proven " to be true

in everyone who has been desensitized to apirin and who takes large doses daily

and as we all know too well, each of us with Samter's have variying degrees of

the disease and not all things work for all of us. Samter's is so hard to deal

with because it really seems to have no rhyme or reason and things work well for

a while and can change.

> >

> > I did want to share this experience and say that for me so far so good

without taking the aspirin. I am hoping this continues and I am truly thankful

that I did not have to have another surgery. I do feel like at this point my

life has been dramatically improved. I have started being very cautious of the

things I eat, try to stay with all natural foods, no processed foods, drink only

water and take loads and loads of vitamins and minerals along with visiting a

salt cave to breathe in the salt air (www.saltcave.us) might be one in your

area. Every morning I wake up with an anxious feeling wondering if things are

still going to hold good so that's a bit of a drag but once I am up and see that

I have slept a whole night through breathing through my nose and that I can

breathe through my nose through out the day I am thankful.

> >

> > I hope this info might give someone else a different option and that it may

help with their situation.

> >

> > Thanks for listenting.

> > R

> >

> >

>