RE: Re: Desensitization cycle (?)

[Guest guest]

> From: Jim Brown <jim747@...>

> Subject: Re: Re: Asprin Tylenol and now Aleve

>

>

> I just had my 6 month update after being desensitized to aspirin. I regret

> that it doesn't seem to have helped much. I thought it was helping at first,

> but now I'm not so sure. However, I am still taking aspirin and hope that it

> may eventually show positive results.

>

In the last 2 years I have desensitized 4 times, and and just coming off the

last cycle due to a minor operation scheduled for later this week.

I am starting to form the opinion that:

- desensitization makes you feel better for a while,

- going OFF desensitization makes you feel better for a while,

but after the " while " , in both cases, the symptoms return.

This is not a scientifically-based statement, just my observation to date.

FWIW.

Ken West

[Guest guest]

That's a great endorsement of desensitization, Lori.

Clearly, like some other posters, my experience, disappointingly, has not

been as consistant as yours was. As you say, it could be partly due to the

relative severity of the symptoms -- we can always acknowledge that each

case is unique to some degree.

Despite my inconsistant results, I still encourage all Samterites to look

into, and consider, ASA desensitization.

regards,

Ken West

> From: " truelori " <lori@...>

> Reply-samters

> Date: Mon, 03 May 2004 13:47:30 -0000

> samters

> Subject: Re: Desensitization cycle (?)

>

> I was on aspirin for seven years and had no asthma exacerbations at

> all during that time and required no prednisone. That's compared to

> beforehand almost constantly being on prednisone and being in the ER

> and inpatient for a week or more multiple times a year. The nasal

> poylps grew back but noticeably slower than without the aspirin.

>

> The only reason I went off the aspirin each time was for surgery.

>

> Maybe the more severe the asthma or other Samters symptoms, the more

> potential for improvement in the symptoms with aspirin

> desensitization? I don't know.

>

> I felt MUCH worse when I went off of the aspirin, definitely not

> better at all, and had to go on prednisone right away. Both

> desensitizations were before the advent of the leukotriene

> modifiers/antagonists. For the last two years I've been able to stay

> off prednisone without the aspirin except for one exacerbation, and I

> attribute it to the Singulair, but who knows. I'd go back on the

> aspirin again now except we might try to get pregnant, and I want to

> wait until after that. If I got worse or knew I wasn't thinking of

> having kids, I would probably get desensitized again. My

> cardiologist also wants me to consider it because I may have some

> heart problems, but that's another story.

>

> Lori

>

> In samters , Ken West <kenwest@e...> wrote:

>>> From: Jim Brown <jim747@e...>

>>> Subject: Re: Re: Asprin Tylenol and now Aleve

>>>

>>>

>>> I just had my 6 month update after being desensitized to aspirin.

> I regret

>>> that it doesn't seem to have helped much. I thought it was

> helping at first,

>>> but now I'm not so sure. However, I am still taking aspirin and

> hope that it

>>> may eventually show positive results.

>>>

>> In the last 2 years I have desensitized 4 times, and and just

> coming off the

>> last cycle due to a minor operation scheduled for later this week.

>>

>> I am starting to form the opinion that:

>> - desensitization makes you feel better for a while,

>> - going OFF desensitization makes you feel better for a while,

>> but after the " while " , in both cases, the symptoms return.

>>

>> This is not a scientifically-based statement, just my observation

> to date.

>> FWIW.

>>

>> Ken West

>

>

>

>

>

>

[Guest guest]

Ken and Lori,

I guess it's just another case of samters sufferers reacting differently.

Like I mentioned, I still want to stay on aspirin for a while at least. Dr.

son's clinical studies definitely show positive results for most

people. During my initial interview with him, he was very positive about my

being an excellent candidate for desensitization. I think my problem may

still be my large polyps in my frontal sinuses. I think that is where my

constant infections come from. If, after another year or so, my symptoms

don't improve, I may consider having the frontal sinus surgery and then get

desensitized again.

Jim

Re: Re: Asprin Tylenol and now Aleve

> >

> >

> > I just had my 6 month update after being desensitized to aspirin.

I regret

> > that it doesn't seem to have helped much. I thought it was

helping at first,

> > but now I'm not so sure. However, I am still taking aspirin and

hope that it

> > may eventually show positive results.

> >

> In the last 2 years I have desensitized 4 times, and and just

coming off the

> last cycle due to a minor operation scheduled for later this week.

>

> I am starting to form the opinion that:

> - desensitization makes you feel better for a while,

> - going OFF desensitization makes you feel better for a while,

> but after the " while " , in both cases, the symptoms return.

>

> This is not a scientifically-based statement, just my observation

to date.

> FWIW.

>

> Ken West

[Guest guest]

Thanks, Lori,

Yes, I agree that it's better to be " clean " prior to desens.. My intranasal

polyps weren't too bad at the time. I just didn't want to get the big

frontal obliteration surgery (or whatever it's called). I figured it was

easier to try desens. first and then maybe avoid the big surgery. Also, I

wasn't really satisfied with the surgeon's explanations or his apparent

lack of familiarity with samters, so I decided to just go ahead to Scripps.

Dr. son reviewed my catscans and thought that I had made the right

decision at the time.

Jim

> [Original Message]

> From: truelori <lori@...>

> <samters >

> Date: 5/3/2004 8:01:00 PM

> Subject: Re: Desensitization cycle (?)

>

> Jim,

>

> I did have sinus surgery the second time five weeks before I was

> desensitized, and I think it made a big difference. I went 5 and a

> half years before the next surgery which was a big increase from the

> previous times between surgeries. So maybe that would make a

> difference ...

>

> Lori

>

>

>

>

>

>

>

[Guest guest]

Dear Ken,

I'm sorry the aspirin desensitization hasn't worked as well as you hoped.

However, I believe you can find something that will help a lot. There are

all types of things to try - low fat diet, exercize, alternative

treatments. I have gone by the motto of never give in, never give up

(borrowed from Galaxy Quest!) and it has helped me a lot.

Re: Re: Desensitization cycle (?)

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