Re: self-desensitizing

[Guest guest]

Lori,

I agree with not desensitizing yourself. I for one am too afraid to do it. Many trips to the hospital for a shot of ephenephren to restore my breathing puts the fear in me. I fear that the next time I have a reaction that I may not make it to the hospital in time.

Tami

self-desensitizing

I'm probably going to have to pipe up and throw this in every time thiscomes up, because I just feel very strongly about it. In my opinion,self-desensitization is a VERY VERY BAD IDEA. I'm not trying to reopen adebate about it, but when people ask about it I have to tell them that thisis how I feel.There I said it. I recognize that Ken gave weight to both sides in hisprimer, but I also do not agree that we all "know our own bodies," at least,not well enough to predict with any degree of certainty how we might reactwhen attempting to desensitize ourselves. Because before I reacted toNSAIDs for the first time I never had reacted before, and my reaction isdifferent every time, but sometimes has been severe enough that I could havedied.So it's your own personal choice but once again I think it's a poor decisionto try to desensitize yourself to aspirin. It's possible. I just thinkit's reckless.Lori

[Guest guest]

To any and all,

I have seen post that the Desensitization at Scripps is free, but to this point I have not seen any info on how to go about setting up an appointment. Does anybody know whom to call. How do I go about setting this whole thing up. I don't mind spending the money on the trip if it provides me with a safe means of treating my illness. I am concerned how Samters will affect my livelyhood in the long term. I am not desperate yet. But I have read the self desensitization posts with lot of interest. Please pass info or past posts for me to look at

Thanks to all

Marcus

[Guest guest]

Hi all,

I also had an attack last October after taking to aleive. My primary told me to take them for a knee injury..even after I questioned him. Flush face, anxiety, wheezing, tight chest..the works.

I am a full time paramedic (22 years) so had the nebulizer treatment, O2 and the phone beside me for a very scary two hours. This is when I realized our problems are best left to our specialist and our own education.

Tom

[Guest guest]

Tami,

And I guess anyone else who is reading, you mentioned not being able

to reach the hospital in time. Been there....but I did make it

to the fire station and got treatment there till they could get me

moved to the hospital. By then I was unconscious but not everyone

remembers that EMT's are always at the fire stations.

Hope no one has to use that information, but it's good to keep

in the back of your mind.

-- Re: self-desensitizing

Lori,

I agree with not desensitizing yourself. I for one am too afraid to do it.

Many trips to the hospital for a shot of ephenephren to restore my breathing

puts the fear in me. I fear that the next time I have a reaction that I may

not make it to the hospital in time.

Tami

self-desensitizing

I'm probably going to have to pipe up and throw this in every time this

comes up, because I just feel very strongly about it. In my opinion,

self-desensitization is a VERY VERY BAD IDEA. I'm not trying to reopen a

debate about it, but when people ask about it I have to tell them that this

is how I feel.

There I said it. I recognize that Ken gave weight to both sides in his

primer, but I also do not agree that we all " know our own bodies, " at least,

not well enough to predict with any degree of certainty how we might react

when attempting to desensitize ourselves. Because before I reacted to

NSAIDs for the first time I never had reacted before, and my reaction is

different every time, but sometimes has been severe enough that I could have

died.

So it's your own personal choice but once again I think it's a poor decision

to try to desensitize yourself to aspirin. It's possible. I just think

it's reckless.

Lori

[Guest guest]

Gee, I tried to include all pertinent info about desensitization in my " primer " ,

in the Files section.

samters/files/Desensitization-v3.html

Hopefully you've had a chance to look at it, having been announced in recent

posts.

It has a link to the appropriate page in the Scripps website, and there is a

phone# there.

I'd appreciate any feedback you might have about the primer, after you've

visited it.

Thanks.

regards,

Ken

> To any and all,

> I have seen post that the Desensitization at Scripps is free, but to this

> point I have not seen any info on how to go about setting up an appointment.

> Does anybody know whom to call. How do I go about setting this whole thing

> up. I don't mind spending the money on the trip if it provides me with a safe

> means of treating my illness. I am concerned how Samters will affect my

> livelyhood in the long term.

> I am not desperate yet. But I have read the self desensitization posts with

> lot of interest.

> Please pass info or past posts for me to look at

> Thanks to all

> Marcus

[Guest guest]

Hi, I just wanted to add my 2 cents also. I also had an anaphylactic reaction to a NSAID. My rescue inhaler was not working.I had to call 911. The ambulance I was in was not going to make it to the hospital in time, so another ambulance with a paramedic was dispatched to meet us on the highway. He started an IV and gave me a breathing treatment. I was given steroids and more breathing treatments at the hospital. It scared the stuffings out of me. I thought I was going to die. Not fun.

-- Re: self-desensitizing

Tami,And I guess anyone else who is reading, you mentioned not being ableto reach the hospital in time. Been there....but I did make itto the fire station and got treatment there till they could get memoved to the hospital. By then I was unconscious but not everyoneremembers that EMT's are always at the fire stations.Hope no one has to use that information, but it's good to keepin the back of your mind.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I took that ambulance ride too. Scariest day of my life.

I also chose desensitization at Scripps years later, in the hopes of that never happening to me again. They carefully monitored me and the desensitization reaction was very mild. I'm on 1300mg of aspirin almost a year later, and it has changed my life. I have a sense of smell, my asthma has improved, and I have fewer sinus infections and sick days.

Having a serious NSAID reaction does not mean you can't be desensitized safely by professionals who know what they're doing. I hope more people consider it. It sure helped me.

Holinka-----------------------------http://www.weeblog.comClassrooms will be blogged for your convenience.steph@... im: answergrape

Re: self-desensitizing

Tami,And I guess anyone else who is reading, you mentioned not being ableto reach the hospital in time. Been there....but I did make itto the fire station and got treatment there till they could get memoved to the hospital. By then I was unconscious but not everyoneremembers that EMT's are always at the fire stations.Hope no one has to use that information, but it's good to keepin the back of your mind.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Dear Marcus,

I also want to put in my comment that I think self desensitization is not

safe. I don't think it is worth the risk. You don't know how your body

will react and you could end up in serious trouble. In Ken's details on

desensitization he also has a warning from a woman who tried to do it and

ended up at the emergency. Especially since you haven't had aspirin and so

you don't know how you'd react - I wouldn't try it. Scrpps is much safer.

Re: self-desensitizing

To any and all,

I have seen post that the Desensitization at Scripps is free, but to this

point I have not seen any info on how to go about setting up an

appointment.

Does anybody know whom to call. How do I go about setting this whole thing

up. I don't mind spending the money on the trip if it provides me with a

safe

means of treating my illness. I am concerned how Samters will affect my

livelyhood in the long term.

I am not desperate yet. But I have read the self desensitization posts

with

lot of interest.

Please pass info or past posts for me to look at

Thanks to all

Marcus

<< File: ATT00025.htm >>

[Guest guest]

Hey guys:

1. The reason that we are in the Samters group is because we ALL have had a reaction to ASA or an NSAID. This is not news. It's one of the reasons that we talk about desensitization.

2. We've had all these self-desens-risk discussions before. Lori specifically said she was " not trying to reopen a debate about it " . I sincerely appreciate Lori's very sensible cautions to the rest of this growing group, given the reality that some people already have, and some people will in future, self-desens.

3.. The " primer " which triggered this latest round of risk discussion, specifically acknowldges the risk, and refers to some of the previous postings which illustrate that risk. I've recently added a warming about death, and put it in a ghastly shade of yellow.

4. Clearly, attempting to survive the reaction that comes with doing the " basic " desensitization process yourself, without even a rescue inhaler (bronchodilator), as in 's note, below, would be unwise, to say the least.

What's my point? Not sure. Maybe just that one of the purposes of the primer was to consolidate what we know, as a group, about desnsitization, so that we could move on, learn more and add to the body of knowledge in a manageable fashion. I'm sorry that it's just generating repeats of old discussions.

regards,

Ken West

From: " efourqurean " <efourqurean@...>

Reply-samters

Date: Wed, 2 Apr 2003 13:43:57 -0500 (Eastern Standard Time)

<samters >

Subject: Re: self-desensitizing

Hi, I just wanted to add my 2 cents also. I also had an anaphylactic reaction to a NSAID. My rescue inhaler was not working.I had to call 911. The ambulance I was in was not going to make it to the hospital in time, so another ambulance with a paramedic was dispatched to meet us on the highway. He started an IV and gave me a breathing treatment. I was given steroids and more breathing treatments at the hospital. It scared the stuffings out of me. I thought I was going to die. Not fun.

[Guest guest]

Since we haven't really re-opened the discussion, I'll add my 3 cents <bg>

Before I went to Scripps I would have never considered doing the desens on my own. After going there and seeing how it is done I would probably do it with the help of my family doctor. Also, I have a nebulizer. If I did not have one I would never do it on my own.

I would certainly recommend that you have it done at Scripps the first time so that you can see how you react and how you get past the reaction. Then if you ever need to do it again, you can make the decision to do it with the help of your local doctor or go back to Scripps.

Rob

Re: self-desensitizingHi, I just wanted to add my 2 cents also. I also had an anaphylactic reaction to a NSAID. My rescue inhaler was not working.I had to call 911. The ambulance I was in was not going to make it to the hospital in time, so another ambulance with a paramedic was dispatched to meet us on the highway. He started an IV and gave me a breathing treatment. I was given steroids and more breathing treatments at the hospital. It scared the stuffings out of me. I thought I was going to die. Not fun.

[Guest guest]

I think this reply is a little snippy. I was trying to make the point that I had NEVER had that kind of reaction before. The reaction I was referring to was very bad. I don't think people should try and do the desensitization on their own. It is NOT safe.

-- Re: self-desensitizingHi, I just wanted to add my 2 cents also. I also had an anaphylactic reaction to a NSAID. My rescue inhaler was not working.I had to call 911. The ambulance I was in was not going to make it to the hospital in time, so another ambulance with a paramedic was dispatched to meet us on the highway. He started an IV and gave me a breathing treatment. I was given steroids and more breathing treatments at the hospital. It scared the stuffings out of me. I thought I was going to die. Not fun.