Re: DIY Aspirin desensitization

[Guest guest]

Stefano,

I reacted to much less than 50 mg. I would suggest starting with 5mg.

The group policy is to not support DIY desensitization because of the risk of death. It has been done but I doubt there will be a helpful discussion here.

I understand your frustration.

Pam

On 12/30/07 7:49 PM, " Stefano Henriko " <skunkburner@...> wrote:

Ok next week I am going to " Do it myself Aspirin desense " , I have tried to find an ENT guy here in Argentina that knows about it and I come up with blank what are you talking about faces.

I intend to start taking baby aspirin, maybe around 50mg then wait 2 hours and take 100mg and try this process until I get a reaction, when i get a reaction wait another 2 hours and take the same dosage. (When do I stop this process?) I will up the dosage if all goes well to 1300mg over a period of 2/3 days but what I need to know is how many dosage's do I take per day / per 2 hours?

I know it sounds silly to do it myself but the only other option is to fly to the states which is extremely expensive, I have some inhalers and ephedrine tablets at hand so any extra info will be appreciated and I understand that no one is medically certified and the info is ONLY info about there own personal circumstances. Also my wife will monitor my status with some emergency paramedics at hand. Sounds scary but the fact is I have had enough. Constant sore heads and can't eat properly, taste, smell or relax.

cheers and thanks.

Sent from <http://us.rd./mailuk/taglines/isp/control/*http://us.rd./evt=51949/*http://uk.docs./mail/winter07.html> - a smarter inbox.

[Guest guest]

> From: Pam <pam@...>

> Stefano,

>

> I reacted to much less than 50 mg. I would suggest starting with 5mg.

For sure, 50 mg is too high to start.

There are many ways to start lower, some noted in the links.

Also, I think 2 hours is too short an interval. I personally experienceed

symptoms starting more than 2 hours after taking a dose -- you must be

confident that you have finished any reaction to one

Your other precautions are appropriate.

>

> The group policy is to not support DIY desensitization because of the risk

> of death. It has been done but I doubt there will be a helpful discussion

> here.

Pam, there is a risk of death, but who set the " policy " of not supporting

DIY desens? Members here are thinking, informed adults, who are capable of

making their own decisions, using the information they find here and

elsewhere. Many members have done DIY desens, and no member has reported

death due to the procedure.

And, your doubt about " helpful discussion " is strange since over the years

there has already been much helpful discussion on this. Sorry you do not

find the group helpful in this regard.

>

> On 12/30/07 7:49 PM, " Stefano Henriko " <skunkburner@...> wrote:

>

>> Ok next week I am going to " Do it myself Aspirin desense " ,

[Guest guest]

It's definitely not the group policy to be against doing aspirin

desensitization yourself. Pam may have thought that because I am one

of the moderators and I usually come out very strongly against it,

and I definitely do not think it is a good idea.

I do not think as a group we can recommend FOR do-it-yourself aspirin

desense ... however, I certainly think it has been discussed many

times before and people can certainly discuss what might work and has

not worked. This would be a safer way of doing it and it has been

done in the past. I also think having emergency medical personnel

aware of the situation and sort of nearby or on call would be a very

good idea.

One thing here I definitely have to disagree with, Ken, is the part

about no death being reported -- if someone on the group did die from

it, we probably would not ever hear about it. Because, well, the

person would be dead. I almost could not tell Ken if you were just

being humorous in that statement or not! But since I know your

position on self-desensitization I have to think you were serious

that " no death has been reported. " I think the less safety

precautions used, the more likely a death would be.

The one death I do know of was from someone on the group who did take

aspirin and did die because she could not get to an emergency room

soon enough, and her family member wrote to us about it. This was a

year or two ago. It was not in the context of desensitization,

however, but this family member was adamant against self-

desensitization, because the person that had died had previously not

had such a severe reaction to aspirin.

I think it can be done safely for SOME PEOPLE but reactions are

unpredictable and I think all precautions should be taken and you

should be very close to emergency help and have a doctor aware of the

situation. But I would personally recommend against it at all, that

is just my opinion and not a policy. It is based also upon my

experience of reacting severely during the formal densitization in

the hospital to a very, very small dose of aspirin (I believe 10

milligrams or less). I also came close to death twice after taking

aspirin outside of the desensitization procedure (actually

ibuprofen). It was an experience I would never repeat outside of a

hospital or clinic.

Lori

[Guest guest]

All,

I may have de-sensed myself, although I might be premature in stating this. I started by taking a half of a baby aspirin every day for a week and then worked up from there, increasing my dose every week. I went up to 2 baby aspirins twice a day. Now I take one baby aspirin twice a day. The other day I actually took an Advil with no problem whatsoever.

Of course, I DO NOT recommend that anyone do this, I just had a hunch that I could do it based on what I know about my own health.

I have another gut feeling about Singulair (which happens to not help me at all)---I think this drug may have contributed to my NSAID sensitivity. It's just a hunch but coincidentally I stopped taking it around 3 months ago and now I also seem to be ok with aspirin and the like.

Obviously this is all very complex and everybody is different. Some of you out there seem to be pretty sick and uncomfortable. I am actually in good health and breath fine through my nose. I do have post nasal drip but have always had this and it runs in my family. My chief complaint is nasal polyps high up in my sinuses which prevent me from smelling anything. I do take Nasarel but the spray doesn't seem to reach the area where the polyps are. I'm trying to instill the Nasarel by drops now (instead of spray) but no luck with this yet. My ENT mentioned that there are a couple of new ideas he's looking at which involve a different way of administering topical corticosteroids such as Nasarel, Rhinocort etc.. but he hasn't elaborated on this yet. I expect to see him again soon and will of course share anything that seems worhtwhile.

Happy New Year to all and be well, Dana

samters From: lori@...Date: Mon, 31 Dec 2007 11:36:53 +0000Subject: Re: DIY Aspirin desensitization

It's definitely not the group policy to be against doing aspirin desensitization yourself. Pam may have thought that because I am one of the moderators and I usually come out very strongly against it, and I definitely do not think it is a good idea.I do not think as a group we can recommend FOR do-it-yourself aspirin desense ... however, I certainly think it has been discussed many times before and people can certainly discuss what might work and has not worked. This would be a safer way of doing it and it has been done in the past. I also think having emergency medical personnel aware of the situation and sort of nearby or on call would be a very good idea.One thing here I definitely have to disagree with, Ken, is the part about no death being reported -- if someone on the group did die from it, we probably would not ever hear about it. Because, well, the person would be dead. I almost could not tell Ken if you were just being humorous in that statement or not! But since I know your position on self-desensitization I have to think you were serious that "no death has been reported." I think the less safety precautions used, the more likely a death would be. The one death I do know of was from someone on the group who did take aspirin and did die because she could not get to an emergency room soon enough, and her family member wrote to us about it. This was a year or two ago. It was not in the context of desensitization, however, but this family member was adamant against self-desensitization, because the person that had died had previously not had such a severe reaction to aspirin.I think it can be done safely for SOME PEOPLE but reactions are unpredictable and I think all precautions should be taken and you should be very close to emergency help and have a doctor aware of the situation. But I would personally recommend against it at all, that is just my opinion and not a policy. It is based also upon my experience of reacting severely during the formal densitization in the hospital to a very, very small dose of aspirin (I believe 10 milligrams or less). I also came close to death twice after taking aspirin outside of the desensitization procedure (actually ibuprofen). It was an experience I would never repeat outside of a hospital or clinic. Lori Don't get caught with egg on your face. Play Chicktionary! Check it out!

[Guest guest]

>>

>> The group policy is to not support DIY desensitization because of the risk

>> of death. It has been done but I doubt there will be a helpful discussion

>> here.

>

> Pam, there is a risk of death, but who set the " policy " of not supporting

> DIY desens? Members here are thinking, informed adults, who are capable of

> making their own decisions, using the information they find here and

> elsewhere. Many members have done DIY desens, and no member has reported

> death due to the procedure.

>

No member has reported death but many have disappeared. Probably that is

due to waning interest, but you don't know.

> And, your doubt about " helpful discussion " is strange since over the years

> there has already been much helpful discussion on this. Sorry you do not

> find the group helpful in this regard.

>

>>

>>

I apologize for the misrepresentation. I have read many posts stating how

irresponsible it is to discuss this with people who are strangers, it's like

playing doctor.

For the record, I'm not against DIY desensitization.

Pam

[Guest guest]

> From: Pam <pam@...>

> I have read many posts stating how

> irresponsible it is to discuss this with people who are strangers, it's like

> playing doctor.

>

With respect to Samters, my experience is that, compared to most doctors,

(ALL of my doctors, for sure) this group, collectively, is more

knowledgeable, more caring, and less dangerouss.

> For the record, I'm not against DIY desensitization.

>

We don't need to be for, or against.

We need to share experience and knowledge.

[Guest guest]

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

.. . .

>

> I do not think as a group we can recommend FOR do-it-yourself aspirin

> desense ...

.. . . Agreed. Or against . . .

. . .

> One thing here I definitely have to disagree with, Ken, is the part

> about no death being reported -- if someone on the group did die from

> it, we probably would not ever hear about it. Because, well, the

> person would be dead. I almost could not tell Ken if you were just

> being humorous in that statement or not!

.. . .

Perhaps I was too flippant about a serious issue.

>

> The one death I do know of was from someone on the group who did take

> aspirin and did die . . . It was not in the context of desensitization,

>. . . .the person that had died had previously not

> had such a severe reaction to aspirin.

Most of our first reactions are a puzzling surprise. I had 4 very serious

surprises before I (not my doctor(s)) figured out what was going on. That

did not stop me from researching and doing the diy thing, knowledgeably and

carefully. (Just a fact. My only recommendation is to do the research and

make an informed decision as to the best personals course of action.)

PS -- a list of desens facilities was created here more than a week ago.

Only 4 entries have been added since.

samters/database?method=reportRows & tbl=

4

[Guest guest]

Been gone for a while, but glad to have popped back in in time for this lively

debate.

I did my desen at the Cleveland Clinic in Florida on an outpatient basis. Spent

four days

sitting around the waiting room of the allergy clinic there. The ASA was

administered in

blind doses - I am not sure how important that part of the procedure is - about

every two

hours and I did have reactions (pretty mild stuff - itchy eyes, clogged ears and

some

wheezing) on a few occasions during those three days. Each time that happened,

we

called it a day and, after a three or four hour observation period, I was

allowed to go home

for the night. Of course, they kept me under constant supervision, had

pre-alerted the

emergency department, and had a crash cart standing by. I am not sure that I

would have

been as comfortable without the precautions or that the tension caused by

worrying about

what might happen might, in itself, result in some " reactions. "

Previously, before I understood my (our) condition, I had done myself

considerable harm

by ingesting aspirin. The first time, before I knew I was allergic - I ended up

taking an

ambulance ride to the ER, spent a few days in the ICU, and over a week in the

hospital. i

was nearly unconscious by the time they got me to the ER. The second time, I

took some

alka-seltzer (didn't know it was aspirin - duh! - and had been given an

individual,

unlabeled dose in the little package of toiletries that they gave me the first

day at the

dorms in college). I was lucky that my roommates found me, semi-conscious, in

the

shower. Again, a little ASA resulted in an ambulance trip to the ER and several

days in the

ICU and over a week in the hospital.

I would be VERY careful before doing a DIY desen. If you do go forward - be

smart, go

VERY slow, stop for the day at the first sign of any reaction, and have

emergency medical

personnel standing by. But, even with precautions, don't fool yourself that

what you are

doing is safe. Emergency treatment and the ability to get to more advanced

life support is

key. If something does start to go wrong, you need to get emergency treatment,

immediately, and you may require advanced life support in short order. Any delay

could

prove fatal and as pointed out, time is against you. You are, for all intents,

ingesting a

poison - at least for you (us) - and the reaction could be fast and furious.

You would be

better off in a doctors office or at least somewhere VERY close to the hospital

- just in

case.

FWIW, one years post desen, I am on 750 ASA a day, feel good (way better then

when I

was on a handful of meds a day) and recently decided to eliminate Advair from

the mix.

So far, only mild wheezing (which is probably related to coming off the

steroids). Now

down to daily doses of Zertec D and Rhinocort. Still using the waterpik with

the nasal

attachment - but not everyday (although I probably should). Went from 2

Combivent

inhalers a month to one every three or four months, 4 ER visits a year to none,

and five or

six courses of prednisone a year to none.

ie

[Guest guest]

It just reminds me, Ken, of two lines from my all-time favorite

movie, the Princess Bride.

**************

Westley: I told you I would always come for you. Why didn't you

wait for me?

Buttercup (the Princess Bride): Well ... you were dead.

***************

Anyway, people, PLEASE add your information to the list of aspirin

desensitization facilities, if you know someone that does it! Thanks

for creating this, Ken. I see seven on there now and I am going to

add one more. It is in the DATABASE section -- it is on the

site to the left and apparently linked at the bottom of all e-mails

from the group.

Lori

[Guest guest]

Dana,

If you are desensitized to aspirin I don't know of any reason why you

would not be able to take Advil or other NSAIDs. In fact, being able

to take these medications is a big benefit of aspirin desensitization

and it's one reason why some people do desensitization in the first

place.

I really don't know how much you can say about Singulair causing your

NSAID reactions or contributing to it. This is most likely just a

coincidence.

Did you react to the aspirin when you took it during the

desensitization process???

Lori

[Guest guest]

Thanks for sharing your expeirience, ! Very interesting and

helpful.

I think the blind doses is an important part of the medical procedure

for the docs, because there are some people who think they are

allergic/sensitive to aspirin who are not and thus the desensitization

won't be very helpful for them.

Also theoretically the second time you get a dose you won't react to

that same dose level, but I think they are testing for that as well to

make sure it's working. That's another benefit to doing this in a

clinic or hospital setting.

Lori

[Guest guest]

Well, as everyone I'm sure can attest, this is a very weird condition that is not understood very well at all---by us--or the doctors. I was never sensitive to aspirin or ibuprophen until a couple of years ago. This happened coincidentally about 2 years after I started taking Singulair. Maybe also just a coincidence that I don't seem to be very sensitive to NSAIDs now that I am off Singulair. Who knows?

samters rom: lori@...Date: Thu, 3 Jan 2008 16:10:34 +0000Subject: Re: DIY Aspirin desensitization

Dana,If you are desensitized to aspirin I don't know of any reason why you would not be able to take Advil or other NSAIDs. In fact, being able to take these medications is a big benefit of aspirin desensitization and it's one reason why some people do desensitization in the first place.I really don't know how much you can say about Singulair causing your NSAID reactions or contributing to it. This is most likely just a coincidence. Did you react to the aspirin when you took it during the desensitization process??? Lori The best games are on Xbox 360. Click here for a special offer on an Xbox 360 Console. Get it now!

[Guest guest]

Dana, But are you not desensitized to aspirin now? If you are

desensitized to aspirin now, you will NOT Be sensitive to NSAIDs!

That's the whole idea. It has nothing to do with Singulair, I'm

sorry.

There is no coincidence whatsoever in this taking place TWO YEARS

AFTER you started taking Singulair. If it started immediately upon

taking the first doses of Singulair then I might consider it to be a

coincidence, and I might even consider that there could be some far-

fetched connection. Otherwise I just find this to be a completely

ridiculous connection that has no scientific validity whatsoever.

Singulair has been associated with the development of another

syndrome called Churg-Strauss syndrome, but no causative effect has

been shown, and this would not cause you to become sensitive to

NSAIDs.

Singulair was not on the market when I became sensitive to aspirin

and ibuprofen. I developed the NSAID sensitivity " coincidentally "

when I was 20 years old. What I mean to say is, this just happens.

This is part of Samters.

Samters usually develops as an adolescent or adult (there is at least

one child we know of with Samters but it's normally not seen in

children) and when it develops, at some point during the development,

the aspirin sensitvity develops. This is part of the illness. No

one knows why it happens. But it starting happening to people long,

long before Singulair was ever even thought of.

Lori

>

> Well, as everyone I'm sure can attest, this is a very weird

condition that is not understood very well at all---by us--or the

doctors. I was never sensitive to aspirin or ibuprophen until a

couple of years ago. This happened coincidentally about 2 years after

I started taking Singulair. Maybe also just a coincidence that I

don't seem to be very sensitive to NSAIDs now that I am off

Singulair. Who knows?

>

>

> samters@...: lori@...: Thu, 3 Jan 2008 16:10:34 +0000Subject:

Re: DIY Aspirin desensitization

>

>

>

>

> Dana,If you are desensitized to aspirin I don't know of any reason

why you would not be able to take Advil or other NSAIDs. In fact,

being able to take these medications is a big benefit of aspirin

desensitization and it's one reason why some people do

desensitization in the first place.I really don't know how much you

can say about Singulair causing your NSAID reactions or contributing

to it. This is most likely just a coincidence. Did you react to the

aspirin when you took it during the desensitization process??? Lori

>

>

>

>

>

>

> _________________________________________________________________

> The best games are on Xbox 360. Click here for a special offer on

an Xbox 360 Console.

> http://www.xbox.com/en-US/hardware/wheretobuy/

>

[Guest guest]

interesting. Thanks Lori. What is also interesting to me about my own condition (and this gives me hope as well) is that there seems to be some variability. What I mean is that one year ago I was very sensitive to aspirin and advil but now I am not. As I mentioned to did my own pseudo-desensitization which seems to have worked to the extent that I seem to be much less sensitive, although honestly I have yet to take an adult dose of either. I have taken one advil with no symptoms whatsoever and I take a baby aspirin twice daily. Still, my problem is no sense of smell. I assume that there are polyps way up there and they are the culprit. While Nararel and the other sprays seem to keep my nose and sinuses in good condition, they don't seem to reach high enough to help with the polyps. What I am really looking for is a way to shrink polyps without surgery or prednisone..... Dana

samters From: lori@...Date: Sun, 6 Jan 2008 07:04:30 +0000Subject: Re: DIY Aspirin desensitization

Dana, But are you not desensitized to aspirin now? If you are desensitized to aspirin now, you will NOT Be sensitive to NSAIDs! That's the whole idea. It has nothing to do with Singulair, I'm sorry. There is no coincidence whatsoever in this taking place TWO YEARS AFTER you started taking Singulair. If it started immediately upon taking the first doses of Singulair then I might consider it to be a coincidence, and I might even consider that there could be some far-fetched connection. Otherwise I just find this to be a completely ridiculous connection that has no scientific validity whatsoever.Singulair has been associated with the development of another syndrome called Churg-Strauss syndrome, but no causative effect has been shown, and this would not cause you to become sensitive to NSAIDs.Singulair was not on the market when I became sensitive to aspirin and ibuprofen. I developed the NSAID sensitivity "coincidentally" when I was 20 years old. What I mean to say is, this just happens. This is part of Samters. Samters usually develops as an adolescent or adult (there is at least one child we know of with Samters but it's normally not seen in children) and when it develops, at some point during the development, the aspirin sensitvity develops. This is part of the illness. No one knows why it happens. But it starting happening to people long, long before Singulair was ever even thought of.Lori>> Well, as everyone I'm sure can attest, this is a very weird condition that is not understood very well at all---by us--or the doctors. I was never sensitive to aspirin or ibuprophen until a couple of years ago. This happened coincidentally about 2 years after I started taking Singulair. Maybe also just a coincidence that I don't seem to be very sensitive to NSAIDs now that I am off Singulair. Who knows?> > > samters@...: lori@...: Thu, 3 Jan 2008 16:10:34 +0000Subject: Re: DIY Aspirin desensitization> > > > > Dana,If you are desensitized to aspirin I don't know of any reason why you would not be able to take Advil or other NSAIDs. In fact, being able to take these medications is a big benefit of aspirin desensitization and it's one reason why some people do desensitization in the first place.I really don't know how much you can say about Singulair causing your NSAID reactions or contributing to it. This is most likely just a coincidence. Did you react to the aspirin when you took it during the desensitization process??? Lori > > > > > > > __________________________________________________________> The best games are on Xbox 360. Click here for a special offer on an Xbox 360 Console.> http://www.xbox.com/en-US/hardware/wheretobuy/> Watch “Cause Effect,” a show about real people making a real difference. Learn more

[Guest guest]

Dana, if you are taking aspirin every day, you are desensitized, and

therefore you would not be sensitive to aspirin or Advil or any other

NSAID. That's how it works. I really don't understand what you are

saying is variable or different about you. You are desensitized and

therefore you are not sensitive.

I was desensitized to aspirin and took a high dose for seven years and

it did not give me back my sense of smell. I do not know that aspirin

desensitization shrinks the polyps, but I do think it can slow growth.

Maybe for some people it shrinks them. You may have to be on a higher

dose for that to happen, though.

Actually it's funny because the one thing I HAVE found helpful that

actually seems to shrink my polyps (temporarily) is Singulair!

Lori

[Guest guest]

I'm not really sure i understand it either. All I know is that I was never allergic to aspirin, advil or the like until a couple of years ago. Several months ago I went off of Singulair, which doesn't seem to help me anyway, and around the same time started taking baby aspirin in tiny doses and worked my way up. I never got anywhere near the levels used by the doctors who practice desensitization though. I may have gotten up to 1/4 that level only. Recently I took advil without incident and I was surprised by that, I expected some type of reaction---- because I never did a complete desensitization....

samters From: lori@...Date: Fri, 11 Jan 2008 19:57:41 +0000Subject: Re: DIY Aspirin desensitization

Dana, if you are taking aspirin every day, you are desensitized, and therefore you would not be sensitive to aspirin or Advil or any other NSAID. That's how it works. I really don't understand what you are saying is variable or different about you. You are desensitized and therefore you are not sensitive.I was desensitized to aspirin and took a high dose for seven years and it did not give me back my sense of smell. I do not know that aspirin desensitization shrinks the polyps, but I do think it can slow growth. Maybe for some people it shrinks them. You may have to be on a higher dose for that to happen, though.Actually it's funny because the one thing I HAVE found helpful that actually seems to shrink my polyps (temporarily) is Singulair!Lori Watch “Cause Effect,” a show about real people making a real difference. Learn more

[Guest guest]

I don't know what you think a complete desensitization is. You are

taking aspirin without reaction. You are desensitized.

None of us that I know of are born with aspirin sensitivity. We all

develop it, usually as adolescents or adults. That's part of

Samter's syndrome.

Lori

>

> I'm not really sure i understand it either. All I know is that I

was never allergic to aspirin, advil or the like until a couple of

years ago. Several months ago I went off of Singulair, which doesn't

seem to help me anyway, and around the same time started taking baby

aspirin in tiny doses and worked my way up. I never got anywhere near

the levels used by the doctors who practice desensitization though. I

may have gotten up to 1/4 that level only. Recently I took advil

without incident and I was surprised by that, I expected some type of

reaction---- because I never did a complete desensitization....

>

>

> samters@...: lori@...: Fri, 11 Jan 2008 19:57:41 +0000Subject:

Re: DIY Aspirin desensitization

>

>

>

>

> Dana, if you are taking aspirin every day, you are desensitized,

and therefore you would not be sensitive to aspirin or Advil or any

other NSAID. That's how it works. I really don't understand what you

are saying is variable or different about you. You are desensitized

and therefore you are not sensitive.I was desensitized to aspirin and

took a high dose for seven years and it did not give me back my sense

of smell. I do not know that aspirin desensitization shrinks the

polyps, but I do think it can slow growth. Maybe for some people it

shrinks them. You may have to be on a higher dose for that to happen,

though.Actually it's funny because the one thing I HAVE found helpful

that actually seems to shrink my polyps (temporarily) is Singulair!

Lori

>

>

>

>

>

>

> _________________________________________________________________

> Watch " Cause Effect, " a show about real people making a real

difference.

> http://im.live.com/Messenger/IM/MTV/?source=text_watchcause

>