Re: Re: aspirin vs. oral steroids/Ken

[Guest guest]

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

> Subject: Re: aspirin vs. oral steroids/Ken

>

> Ken, just out of curiosity, how much aspirin did you take (dosage?),

I've done desensitization 3 times now, I think.

During the last 2, I was on 1,300mg/day for several weeks, then I backed off

to 650mg/day.

> how long did you stay on it

3 or 4 months. The beneficial effects seemed to wear off after that, and

symptoms returned to such an extent that I resorted to Prednisone, and

started over again.

> and did you have surgery beforehand?

Never had surgery. I've had it recommended by one Dr. Hacker (sic), but

I'm still dithering, and currently just enjoying a Prednisone-induced

smelling " high " .

(And beside, the poll on surgery seems to confirm the casual observation

that surgery does not last long for most Samterites).

> Obviously these are leading questions but I am interested in the

> answers.

>

> Also which are your worse symptoms, asthma or polyps?

Lately it has been the polyps -- total blockage, impossible to breath

through the nose, impossible to *blow* the nose, impossible to get a proper

night's sleep.

>

> For me the asthma was usually much worse, and prednisone stopped

> being effective after a while. The effects of the aspirin

> desenstization lasted the whole time I was on it. The first time I

> did not have surgery first, and so I needed to have surgery again and

> that's the only reason I was desensitized twice. Then when I later

> went off the aspirin is was unrelated to Samter's or actually the

> aspirin even directly.

>

> I was on 1300 milligrams a day for those seven years.

>

> Besides the effectiveness, I am puzzled somewhat by your worries

> about aspirin and its side effects -- do the side effects of

> prednisone worry you less? Or would it make a difference if the

> aspirin was more effective? For me the side effects of prednisone

> seem much more worrisome.

I'm not worried much about the side effects of Prednisone, because I don't

plan to take it long term. I take it just long enought to restore some sort

of normalcy, and then figure out what's next, which, 3 times, has been

desensitization.

I don't know how much I should worry about aspirin side-effects. It's just

that stokes are very ugly, and when I first heard the term " microbleeding " ,

it spooked me. Your 1300mg/day for 7 years is interesting and instructive.

>

> Just some thoughts - I wonder if our bias is effectiveness -- since

> nothing is a panacea here we'd both prefer the solution that works

> better, and basically f*** the side effects (to an extent).

Gosh Lori, I would never say THAT.

But obviously taking any medication is an acceptance of some risk to

whatever degree.

>

> What do you think?

I think your questions and observations are helpful. Thank you.

I think that we agree that we are all suffering from the same thing, but

somehow this thing has such variance between us and that variance has its

own frustrations -- we're all trying to nail different pieces of jelly to

the wall.

>

> Lori

>

Ken

[Guest guest]

Lori, thanks for your carefully constructed note.

You have got me to at least *consider* having surgery before doing

desensitization again. It seems to make sense, at least worth one try.

And yes, I meant " strokes " . My original note generalized, your note needs

consideration. My thoughts are: there are two kinds of strokes, one

involving blockage of blood vessels which denies portions of the brain the

oxygen and nourishment they need, the other involving " leakage " from those

same vessels, causing damage to surrounding brain cells. My layman's

perspective on this is that aspirin would be beneficial for the former, but

hazardous for the latter, and for, eg., the " microbleeding " thing.

Can anyone elaborate on this layman's guess?

--

Ken West

Check the library . . .

samters/links

[Guest guest]

Ken,

I can't answer your question about strokes. However, concerning surgery - it

sounds to me that you

might want to consider it since you are having so much trouble breathing. I

originally could

hardly breathe through my nose. My first surgeon told me that the odds were

great that my polyps

would come back. Therefore he " prepared me " for that by modifying my sinuses -

hollowing out much

more room in there (4 hour surgery). I think it really helped me continue to be

able to breathe

even though some polyps eventually came back. With these newer computer-guided

techniques, I think

the surgeons can be much more successful in getting more polyps farther back in

your sinuses. My

surgeon was afraid to get back too close to my eyes and brain. In my opinion,

following up on

computerized surgery with aspirin desens. should be a good combination for many.

Just my humble

opinion.

Jim

--- Ken West <kenwest@...> wrote:

>

> Lori, thanks for your carefully constructed note.

>

> You have got me to at least *consider* having surgery before doing

> desensitization again. It seems to make sense, at least worth one try.

>

> And yes, I meant " strokes " . My original note generalized, your note needs

> consideration. My thoughts are: there are two kinds of strokes, one

> involving blockage of blood vessels which denies portions of the brain the

> oxygen and nourishment they need, the other involving " leakage " from those

> same vessels, causing damage to surrounding brain cells. My layman's

> perspective on this is that aspirin would be beneficial for the former, but

> hazardous for the latter, and for, eg., the " microbleeding " thing.

> Can anyone elaborate on this layman's guess?

>

> --

> Ken West

> Check the library . . .

> samters/links

>

>

>

>

>

>

>

[Guest guest]

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

> I think the reason for surgery is when prednisone or other chemical means no

> longer TOTALLY shrink the polyps. When they were almost sticking out of my

> nose, no amount of prednisone or diet or aspirin would shrink them all the way

> back. Then you have to cut them out.

That makes sense, and coupled with Lori's feedback, I guess I'm getting more

resolved to going ahead with my Dr. Hacker. Thanks Jim.

>

> Oh yes, unfortunatly, for many of us even your last solution makes our polyps

> worse. That's really the pits.

Hey Jim, there are some things I just don't want to know! (But, I do know

it of course, and it's just one more thing that seeks balance and

moderation.)

>

> Jim (TX)

Ken West

>

> --- Ken West <kenwest@...> wrote:

>

>>

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

>> . . . snip . . .

>>> My surgeon was afraid to get back too close to my eyes and brain. In my

>>> opinion, following up on computerized surgery with aspirin desens. should be

>>> a

>>> good combination for many. Just my humble opinion. Jim

>>

>> OK, here's how I see it:

>> Prednisone = osteonecrosis.

>> Surgery = risk to EYES and BRAIN, over and over again.

>> Desensitization = ASA = microbleeding.

>> Low salicylate diet = BOOOOORING.

>>

>> I think I'll just double my prescription for J & B.

>>

>> Ken West

>>

>>

>>

>>

>>

>>

[Guest guest]

Ken, It's a good question Ken. One I have asked myself often. I had surgery

last December everything went well but the polyps started coming back before

I was even done healing My doctor was shocked and started talking about

another surgery. I developed a staph infection after the surgery and it

took a long time to get it under control. I will have to think very

seriously before doing it again. Things are under control at the moment so

it is far from my mind but if I start having trouble again it will come up

as well as desensitization, My allergy doctor feels strongly about surgery

first then desen. but I don't know what purpose it serves if the polyps come

right back. I guess the theory is that the surgery gets rid of all the

polyps then the desen. keeps them away. It's all very puzzling!

FW: Re: aspirin vs. oral steroids/Ken

>

>

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

> . . . snip . . .

>>

>> In terms of the surgery, as I said, I definitely don't want to appear

>> to be advocating for surgery. It's just my guess that because you

>> didn't have the sinus surgery the aspirin desensitization would not

>> work as well. Doesn't mean you should have surgery, though. I

>> sometimes think honestly that I am worse off having had surgery ever,

>> but since the first one it seems I may always need it (scar tissue

>> forming polyps and such). BUt there's really no way to prove this so

>> I may as well forget about it. And anyway surgery seems to work

>> better for me each time because of all the new treatments that are

>> available in the last 12 years.

>

> OK -- here's the question: Which is more effective?

> Eliminating polyps with surgery, followed by Desensitization,

> or,

> eliminating polyps with Prednisone, followed by Desensitization?

>

> I ask, because right now, following 3 weeks of Prednisone, currently

> reduced

> to 2mg/day, my sense of smell is as good as when I was 10, and this comes

> after months of total congestions and anosmia. So, why not do

> Desensitization now? Why would surgery be of benefit at this time?

>

> Ken West

>

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>

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