Aspirin Desensitization

[Guest guest]

I have said it many times before but I always have to say it

again: I do not recommend aspirin desensitization at home,

ESPECIALLY if you have had bad reactions and/or are afraid of doing

it. I am convinced I would die the next time I took aspirin on my

own. I almost did the first times I took it before I knew I was

allergic. Actually it wasn't even aspirin, it was ibuprofen.

My reaction in the hospital desensitization both times I did it in

1995 and 1998 was pretty severe but because I was at Scripps I felt

safe.

Not everyone can do this safely. It really depends upon your own

knowledge of your reaction to aspirin from the past -- which CAN

change from one time to the next and is not completely predictable.

I am glad we have the info in the library for those who do wish to

try it, but I always think it is a last resort and something I

personally would never, ever try.

Lori in NY

[Guest guest]

Lori,

Is it true that with each subsequent allergic reaction, that it gets worse? It seemed that way with me.

Tami

Re: Aspirin Desensitization

I have said it many times before but I always have to say it again: I do not recommend aspirin desensitization at home, ESPECIALLY if you have had bad reactions and/or are afraid of doing it. I am convinced I would die the next time I took aspirin on my own. I almost did the first times I took it before I knew I was allergic. Actually it wasn't even aspirin, it was ibuprofen. My reaction in the hospital desensitization both times I did it in 1995 and 1998 was pretty severe but because I was at Scripps I felt safe. Not everyone can do this safely. It really depends upon your own knowledge of your reaction to aspirin from the past -- which CAN change from one time to the next and is not completely predictable.I am glad we have the info in the library for those who do wish to try it, but I always think it is a last resort and something I personally would never, ever try.Lori in NY

[Guest guest]

Lori,

I'm a bit confused about asprin in this regard. I thought Samters suffers are essentially intolerant of Salicylate as opposed to being allergic, and therefore anaphylactic shock should not occur - although a severe reaction of a different kind could, but this would be more one of poisoning i.e. the reaction is doese related rather than the run away reaction seen in anaphylacsis where the immune system can go into over drive even in response to very small quantities of allergen. I thought desensitisation therefore was more about building up the bodies ability to break down salicylate - a bit like becoming better at holding your drink when you regularly drink a lot of alcohol. Another type of desensitisation can be carried out in people who are truely allergic to something like bee stings by injecting those allergens into someone.

I'd really like to hear an explanation as I've never yet been offered asprin desensitisation.

Many thanks,

Chris.

-----Original Message-----From: samters [mailto:samters ]On Behalf Of trueloriSent: 22 May 2006 06:54samters Subject: Re: Aspirin DesensitizationI think I could clarify here -- during desensitization you do take a second dose of the same amount and that is how you become desensitized, as said.But I thought what Tami was asking, and what I was referring to, was when you take aspirin but are NOT desensitized, and then take it again another time while not being desensitized, is your reaction worse that time. And at Scripps they told me, yes, it would be worse. Therefore each time I would get desensitized, the initial reaction could potentially be worse. Or if you accidentally took it or didn't realize (as in my case) after the first time that you were allergic/sensitive.I do get anaphylactic shock from aspirin, but, no, my reaction did not become worse on the second dosage from each level of the aspirin. The anaphylactic shock was at the very first dosage. I did have a more severe reaction than most people with Samters, or so they told me at Scripps.Anaphylactic shock or anaphylaxis has these symptoms:respiratory distress, hypotension (low blood pressure), fainting, unconsciousness, urticaria (hives), flushed appearance, angioedema (swelling of the face, neck and throat), tears (due to angioedema and stress), vomiting, itching, and anxiety, including a sense of impending doom I got the respiratory distress, hypotension, urticaria, flushed appearance, swelling of the face, neck and throat, tears, vomiting, itching and anxiety along with a lot of nasal symptoms and nausea, but I did not faint or become unconscious.I have never ever heard of some people not being candidates for desensitization. At Bosso's office they do not desensitize the most severe because it is not inpatient. That's what they told me when I was at Dr. Bosso's. I never got desensitized at Bosso's by choice, but they did receive my records from Scripps and I did not hear whether it was okay for me to be desensitized in the office or not.Hope this clarifies a bit more. :)Lori

[Guest guest]

All I can tell you is that is the reaction that I have, and as far

as I can tell the dose does not matter. I very rarely took aspirin

or any other kind of painkillers before my first reaction. I mean,

I had taken them, but not on a regular basis at all and certainly

not in a high dose. When I had the anaphylactic reactions, the

doses were normal doses one would take for pain (1 or 2 pills, not

of aspirin, but of ibuprofen).

However, during desensitization I reacted to the tiniest dose that

they gave. At Scripps they generally give one or more placebo doses

before you actually start the desensitization to make sure you are

having a true reaction when you do. And some people don't react to

the smallest dose (I think it's like five or ten millirams) but I

did.

I believe others have had similar reactions, too. Also, I do not

believe I am intolerant to salicylates in general, as a matter of

fact. I think there is something about the aspirin itself.

I do not know the reasons for it nor do I understand the pathology

behind it. They have published papers at Scripps about the

desensitization process, but to be honest I am not sure if they ever

discovered exactly why or how it works. They took blood and urine

samples and in some case did lavage and took tissue samples during

the desensitization. They were studying the body's response to the

desensitization and different chemicals in the fluids and tissues.

In any case it seems the definition of anaphylaxis also has to do

with the fact that it is a reaction that involves more than one

bodily system, which I found interesting when I looked it up.

I was not offered aspirin desensitization. I don't think most

people are. Like many treatments for this illness, I had to seek it

out myself, unfortunately.

Lori

---

[Guest guest]

You have to keep taking the aspirin every day at a certain dosage otherwise you will be allergic again. Is this what you were doing?

Lori

[Guest guest]

Hi Michele,

Tell us the details of your desensitization. What mg did you start with? What mg did you react to? What did the Dr. do with your reaction and after?

How long did it take? What is your dose now and how often?

We really can help you if we know the facts.

All of us know how uncomfortable a sinus infection is. Hang in there. My second surgery was much much more successful than my first.

You should wait until after the surgery to try the aspirin again.

Pam

On 6/12/06 8:19 PM, " know_better_time " <know_better_time@...> wrote:

Hi!

I'm new to the group. I was recently diagonosed with Samter's Triad.

My problem has been... that i have an extremely bad sinus infection.

My allergist tried the desensitization, but after about three weeks I

was again allerigic to aspirin. I am going to have sinus surgery in

one month. Has anyone heard of the desensitization not working? Or is

it perhaps because my sinuses are in such bad condition?

My best,

Michele

[Guest guest]

Yes... I was taking it everyday (2 at night and 2 in the morning), but after about two weeks I started to have reactions and wheezing when I was taking it... and developed a lung infection.... Michele Lori Baur <lori@...> wrote: You have to keep taking the aspirin every day at a certain dosage otherwise you will be allergic again. Is this what you were doing? Lori __________________________________________________

[Guest guest]

Hi Pam... Thank you for your input. My doctor suggested we try again after my sinus operation. He started me on one baby aspirin. I didn't have a reaction until one and 1/2 baby aspirin. I was in the doctor's office for 4 days while they upped the dose.... and then took four adult aspirins every day. I felt good for two days but then I (not really being aware at the time but thinking back) slowly became very, very ill. And my reactions was after I took the aspirin or had anything like almonds, grape juice, etc. Had to go back on large dose of predinisone and antibotics, and couldn't get out of bed. So I stopped taking the asprin and went to an ENT for severe sinus disease (which i've had now for many months). But my biggest hope is that the aspirin desensitization will work after the surgery. I am going to a very good doctor at the University of

Virginia ... Dr.ph Han... who specializes in Samter's. He did his undergraduate work in it and now after years of practice and surgeries he said he hopes to, in five years, have an explanation for what causes it. Right now he is doing extensive research in the area. I was just curious if anyone else 'failed' the desensitization. I was very hopeful it would work and could regain some normality. Many thanks,Michele Pamela <pam@...> wrote: Hi

Michele,Tell us the details of your desensitization. What mg did you start with? What mg did you react to? What did the Dr. do with your reaction and after?How long did it take? What is your dose now and how often?We really can help you if we know the facts.All of us know how uncomfortable a sinus infection is. Hang in there. My second surgery was much much more successful than my first.You should wait until after the surgery to try the aspirin again.PamOn 6/12/06 8:19 PM, "know_better_time" <know_better_time@...> wrote: Hi!I'm new to the group. I was recently diagonosed with Samter's Triad. My problem has been... that i have an extremely bad sinus infection. My allergist tried the desensitization, but after about three weeks I was again allerigic to aspirin. I am going to have sinus

surgery in one month. Has anyone heard of the desensitization not working? Or is it perhaps because my sinuses are in such bad condition?My best,Michele __________________________________________________

[Guest guest]

Michele, Hmm, I have never heard of desensitization not working in terms of not being able to take aspirin. I have only heard of it not improving symptoms, but I have never heard of someone not being desensitized. This is very interesting. Maybe you need to go to Scripps or National Jewish for a consultation. Although I see you are seeing ph Han. Have not heard of him before and would love to know more about him.

Good luck, update us.

Lori

..

[Guest guest]

When my

sinuses were full of polyps and other crap, my asthma was bugging me every

evening. It is actually what caused the polyps to be found and for me to be

diagnosed with Samter’s. So, the asthma may be unrelated to the aspirin

and more related to the fact that you have Samter’s and clogged up

sinuses.

K.

Re: Re: Aspirin

Desensitization

Hi ,

I know.. that's what puzzled me. Why my aspirin

desensitization didn't take. So when I started wheezing after I took

aspirin, I reduced my dose and tried to desensitize myself. But that didn't

work either. I kept wheezing through the process and I wasn't able to up

the dose.

My doctor said that it doesn't work for some

people. But he also said that it might be because i have severe sinus

disease.

I will start irrigation again after my surgery.

I'm counting the days until my surgery. I feel so lousy most of the time.

Michele

jbca623

<jbca623@...> wrote:

michelle

this sounds really fishy to me. from what i understand, once you are

desensitized, your body should not react to the aspirin. that's the

whole point of going infections.

jennifer

>

> Hi!

> I'm new to the group. I was recently diagonosed with Samter's Triad.

> My problem has been... that i have an extremely bad sinus infection.

> My allergist tried the desensitization, but after about three weeks I

> was again allerigic to aspirin. I am going to have sinus surgery in

> one month. Has anyone heard of the desensitization not working? Or is

> it perhaps because my sinuses are in such bad condition?

> My best,

> Michele

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Lori, Wow, you've been dealing with Samter's for a while. I just got diagnosed, and I've been a little depressed. I kept thinking I would get 'over it'.... because I'd never had an allergy or asthma before. My allergist had desensitized others ... and I don't know if it's ever failed before. I should have asked my ENT about it. thanks for your response. Michele Lori Baur <lori@...> wrote: Michele, When your allergist says it

doesn't work all the time, I think what he means is that it doesn't help people all of the time. I really have never known of someone that continued to be allergic or sensitive after desensitization. Has anyone else heard of this? I was desensitized twice, once in 1995 and once in 1998, for a total of seven years, and went off the aspirin in 2003 when I got a cancer diagnosis and was told not to take the aspirin during treatment. I'm not sure what you mean about eating normally. The mushroom allergy I have is completely unrelated to the Samters as far as I can tell and the corn seems to be unrelated, and neither was affected by the aspirin in any way. I never have had a problem that I can tell with salicylates in foods and hence I noticed no difference in what I could eat while on aspirin. Hope this helps Lori. __________________________________________________

[Guest guest]

Hi Jacqui,

You are so fortunate to not have the asthma symptoms. My guess is that if you continue to get worse the asthma would start. The great news is that aspirin might halt the progression of this disease. It has for me.

If you don’t have asthma and do get desensitized, you might not need the Zyflo.

You should do a search of the old messages with your subject as the key word. Also there is a wealth of information in the files. Both of those can be accessed through the web page.

Let us know how everything helps or not.

Pam

On 7/28/06 9:27 AM, " rbztl45 " <rbztl45@...> wrote:

Has anyone done this and had success with the polyps not returning? I

am scheduled to do this treatment in SAN at the end of Aug. I have

already had 2 previous sinus surgeries. I can't smell or taste and

now my right ear is completely blocked. Believe it or not, the asthma

has never been a problem for me.

My allergist just started me on Zyflo, which I am not looking forward to.

Hi everyone, I am new here. I am 35 year old female, former flight

attendant. Couldn't continue my career because of all the sinus problems.

I look forward to hearing from others.

Jacqui

[Guest guest]

Michele,

I just want to be clear about what you and your doctor are talking about. Is your doctor saying it is not effective for some people? Or is he saying that some people do not become desensitized?

It is well known that aspirin desensitization doesn't work for everyone in terms of effectiveness in relieiving symptoms. However, as far as I understand it (although there are no guarantees in medicine and certainly not with Samters) -- everyone becomes desensitized to aspirin if it is done right.

Can you clarify what you mean when you say it "doesn't work?" Because from what you described at the time, it sounded like you and your doctor thought you were not desensitized to the aspirin. Which certainly could be possible, but I have never heard of it.

I posted the statistics several weeks ago about the percentages from the studies at Scripps. I don't remember what they were, but they were not near 100 percent. I think it's worth it for almost everyone to try if at all possible, though.

Lori

[Guest guest]

Hi Lori, I believe what he meant... is that the desensitization does not work on all people. BUT I'm not 100% sure this is what he meant. For me.... it DID work for about a week after I underwent the desensitization. And then (and again, I'm not exactly sure why... as my doctor pointed out I had several things happening that could have affected the outcome). But after the initial week, my body began to slowly react to the aspirin as if I were allergic to it again. Not realizing this could happen, I became very sick and ended up with a lung problems, etc. I absolutely AGREE! I think aspirin desensitization is one of the best things we can try to do to improve our health. I am going to try it again at some point after the surgery. My doctor said that if the desensitization is successful that overtime some people have been able to eventually reduce their intake

of Zyflo. Michele Lori Baur <lori@...> wrote: Michele, I just want to be clear about what you and your doctor are talking about. Is your doctor saying it is not effective for some people? Or is he saying that some people do not become desensitized? It is well known that aspirin desensitization doesn't work for everyone in terms of effectiveness in relieiving symptoms. However,

as far as I understand it (although there are no guarantees in medicine and certainly not with Samters) -- everyone becomes desensitized to aspirin if it is done right. Can you clarify what you mean when you say it "doesn't work?" Because from what you described at the time, it sounded like you and your doctor thought you were not desensitized to the aspirin. Which certainly could be possible, but I have never heard of it. I posted the statistics several weeks ago about the percentages from the studies at Scripps. I don't remember what they were, but they were not near 100 percent. I think it's worth it for almost everyone to try if at all possible, though. Lori

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I also do not get any relief from desensitization. The study that was done at Scripps stated the 13% of the people who went through the desensitization did not get any relief. Lucky us!

Rob

From: samters [mailto:samters ] On Behalf Of michele bledsoeSent: Tuesday, August 08, 2006 7:42 PMsamters Subject: Aspirin Desensitization

Ok, sorry for all the posts!!! I'm just not sleeping much so have a little too much time on my hands... but promise this is the last from me for while!!!

I did want to write and say that I asked my doctor about the desensitization not working on me. He said that it doesn't work on all people. Now, did it not work on me because I (well, I think I did, but can't say for sure ...because I didn't journal my medications) decreased my Zyflo....because of my severe sinus infection.... or is it that something else in my system didn't let it work.

Anyway, I just thought I'd share that because I know I discussed it with Lori and some others on the list.....

Michele

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Craig,

Several of us have gone through desensitization and there are many posts

describing many different providers that offer it. On the web page, search

the archived posts and there is a section in the files devoted to aspirin

desensitization.

It is a very effective treatment for some of us and worth investigating.

Pam

On 5/11/07 10:04 AM, " craig.ashbrook " <craig.ashbrook@...> wrote:

> Has anyone in the group undergone the aspirin desensitization

> procedure? If yes, then could you share with me exactly what the

> procedure entails?

>

>

>

>

>

[Guest guest]

I have not gone through the procedure and I brought it up Monday when I went to see my pulmologist but he didn't think it would help me. I am going to see the ENT on this coming Monday and I will bring the subject up to him. Both along with my PCP have been against it. Asprin is not just an allergy for me, I totally stop breathing when I take asprin so they are all against me trying it. I here on this site that others have had great results from the process.

Aspirin desensitization

Has anyone in the group undergone the aspirin desensitization procedure? If yes, then could you share with me exactly what the procedure entails?

[Guest guest]

I did the desensitization as described in a previous post. It takes

about a month with small incremental increases. This makes more sense

to me than trying to do it in just a few days. Be sure you MD is O.K.

with this and has you provided with the necessary rescue drugs -

epinephrine injection, antihistamine, and albuterol inhaler. My

desensitization was uneventful and I needed no rescue meds. I have

been taking 1300 mg. daily for quite awhile now.

Has anyone out there tried reducing back from 1300mg? What were the

results?

>

> Has anyone in the group undergone the aspirin desensitization

> procedure? If yes, then could you share with me exactly what the

> procedure entails?

>

[Guest guest]

Hi all, I'm into my 5th week of aspirin desense. I'm only on 150mg/day, but I have been havingconstant symptoms - chronic exhaustion, nausea, worse asthma than normal, itchy and very puffy eyes, swollen itchy throat and also nose bleeds indicating something is going on in my sinuses. My Consultants think I'm probably only partially desens to the aspirin and I'll probably soon have to go back down to a smaller dose or maybe even stop. I feel really quite disappointed that this (so far) hasn't worked for me. It means there are no more aces up my sleeve to deal with this disease. Has anyone else had this reaction to aspirin on a long term basis? BeckyCarl Ondry <ondry@...> wrote: I did the desensitization as described in a previous post. It takesabout a month with small incremental increases. This makes more senseto me than trying to do it in just a few days. Be sure you MD is O.K.with this and has you provided with the necessary rescue drugs -epinephrine injection, antihistamine, and albuterol inhaler. Mydesensitization was uneventful and I needed no rescue meds. I havebeen taking 1300 mg. daily for quite awhile now. Has anyone out there tried reducing back from 1300mg? What were theresults?>> Has anyone in the group

undergone the aspirin desensitization > procedure? If yes, then could you share with me exactly what the > procedure entails?>

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account today.

[Guest guest]

I am also considering Aspirin Desensitization(at Nyack Hospital).

My chief complaint is anosmia, and of course, I can't taste food

either. My symptoms are fairly mild---I don't believe I actually

have athsma, although my grandfather had it and I've had a history

of allergy---hay fever etc...

These days I breath well and don't have much in the way of allergic

symptoms---

unless I take aspirin or ibuprophen. I have been taking Singulair

for a few years and also Nasarel(which doesn't seem to do much of

anything anymore). Saline rinses always make me feel a bit better.

I've had

2 surgeries to remove polyps and can usually smell for only 3 or 4

weeks after the surgery. Prednisone works well, although not the

dose-pak which seems to be too weak. My question is: is anyone's

situation similar in that they really feel pretty well except for

the fact that they can't smell? And, has anybody had their sense of

smell restored permanently with Aspirin Desensitiztion?

> >

> > Has anyone in the group undergone the aspirin desensitization

> > procedure? If yes, then could you share with me exactly what the

> > procedure entails?

> >

>

[Guest guest]

Hi Becky,

I suspect that you are not desensitized and your symptoms are a reaction to the aspirin. Talk to your Consultants about starting over with smaller doses and smaller increments. I say this because of your strong reaction to the first dose.

I was desensitized by my allergist in one day. There was one reaction early on but after that I have felt much better than I did before aspirin. It took a few months for my sense of smell to return.

Pam

On 5/11/07 2:28 PM, " Bannister " <beckyb256@...> wrote:

Hi all,

I'm into my 5th week of aspirin desense. I'm only on 150mg/day, but I have been havingconstant symptoms - chronic exhaustion, nausea, worse asthma than normal, itchy and very puffy eyes, swollen itchy throat and also nose bleeds indicating something is going on in my sinuses. My Consultants think I'm probably only partially desens to the aspirin and I'll probably soon have to go back down to a smaller dose or maybe even stop.

I feel really quite disappointed that this (so far) hasn't worked for me. It means there are no more aces up my sleeve to deal with this disease.

Has anyone else had this reaction to aspirin on a long term basis?

Becky

Carl Ondry <ondry@...> wrote:

I did the desensitization as described in a previous post. It takes

about a month with small incremental increases. This makes more sense

to me than trying to do it in just a few days. Be sure you MD is O.K.

with this and has you provided with the necessary rescue drugs -

epinephrine injection, antihistamine, and albuterol inhaler. My

desensitization was uneventful and I needed no rescue meds. I have

been taking 1300 mg. daily for quite awhile now.

Has anyone out there tried reducing back from 1300mg? What were the

results?

>

> Has anyone in the group undergone the aspirin desensitization

> procedure? If yes, then could you share with me exactly what the

> procedure entails?

>

is the world's favourite email. Don't settle for less, sign up for your free account today <http://uk.rd./evt=44106/*http://uk.docs./mail/winter07.html> .

--

[Guest guest]

Michele, sorry to hear about all you have been through. I had never

heard about IVIG treatment for this but I just read about it and I

saw it is used sometime in severe asthma with high IgE levels. Do

you normally have very high IgE? Have they ever considered a

diagnosis of Churg-Strauss syndrome for you and/or checked for it?

I have also never heard of helium with asthma! You certainly are

educating me a lot tonight. I just hate that you've been through

such hell.

What does interferon have to do with the pneumovax vaccine? I do

find that very interesting the vaccine caused your symptoms to go

away!

So if I understand you right, they weren't able to go up higher on

the aspirin than a baby aspirin, and you stopped taking it again?

That's what makes me wonder if you don't have Samters but perhaps

something like Churg-Strauss (which has many of the same symptoms of

Samters). I still think Churg-Strauss may be underdiagnosed, and I

often have wondered if Samters is just a subset of Churg-Strauss.

But I think many do not have high IgE levels (in the past mine has

been elevated), which is part of the Churg-Strauss diagnosis.

Anyway Michele, I am so sorry you've had to endure so much suffering

and I hope something does start really helping soon so your day to

day symptoms can really be improved!

Lori

[Guest guest]

Hi Lori,

Does Churg-Strauss have an aspirin sensitivity too?

I haven't been tested for it.

They believe I have an immune defienciency, so that's

why they are trying the IVIG. It's controversial as

far as asthma. But for those with low subclass Igg 1

& 3 and aspirin sensitivity, it works very well.

And it's the least toxic way to treat asthma in some

cases (instead of steriods). I'll let you know if

mine improves. People who are having trouble

conquering their Samter's symptoms might ask for to

get their immune levels tested.

I'm not sure about interferon. What my doctor said is

that my reaction to the second vaccination made sense

because of the interferon. Maybe my body let off a

bunch of interferon. But I felt completely NORMAL.

It was so wonderful! But only for a short time.

Yeah, the helium. I didn't know what was going on,

all I knew was that my asthma was getting worse in the

ER room and the doctors (who all know me by now)

started to panic. And in came these large tanks....

and I was kind of out of it by then... but then a

little later, they asked how I was doing and I talked

like Mickey Mouse. But it worked. The nurses told me

whenever they see the helium tanks it's not a good

sign. That means they are close to having to use the

tubes. SO everyone was happy the helium worked that

time.

I read that you, too, Lori are having your own trials.

I hope everything is going good for you. You are so

strong and I know you'll get through it!! But still

it must be tough some days. When I go to get my IVIG,

I go to a cancer infusion center... and I have to say

the people there are some of the happiest people. I

guess they realize what life is truly about.

Michele

--- truelori <lori@...> wrote:

> Michele, sorry to hear about all you have been

> through. I had never

> heard about IVIG treatment for this but I just read

> about it and I

> saw it is used sometime in severe asthma with high

> IgE levels. Do

> you normally have very high IgE? Have they ever

> considered a

> diagnosis of Churg-Strauss syndrome for you and/or

> checked for it?

>

> I have also never heard of helium with asthma! You

> certainly are

> educating me a lot tonight. I just hate that you've

> been through

> such hell.

>

> What does interferon have to do with the pneumovax

> vaccine? I do

> find that very interesting the vaccine caused your

> symptoms to go

> away!

>

> So if I understand you right, they weren't able to

> go up higher on

> the aspirin than a baby aspirin, and you stopped

> taking it again?

> That's what makes me wonder if you don't have

> Samters but perhaps

> something like Churg-Strauss (which has many of the

> same symptoms of

> Samters). I still think Churg-Strauss may be

> underdiagnosed, and I

> often have wondered if Samters is just a subset of

> Churg-Strauss.

> But I think many do not have high IgE levels (in the

> past mine has

> been elevated), which is part of the Churg-Strauss

> diagnosis.

>

> Anyway Michele, I am so sorry you've had to endure

> so much suffering

> and I hope something does start really helping soon

> so your day to

> day symptoms can really be improved!

>

> Lori

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Lori,

I don't know what interferon has to do with the

pneonvac shot, but my doctor said it makes sense that

I improved that much and it was probatly due to the

interferon.

This is what I found on one site:

" While we know that aspirin inhibits prostaglandin

production, new evidence suggests aspirin may activate

the production of Gamma-interferon and Interleukin-2,

which seem to inhibit the growth of malignant cells,

as well as boost the immune system. "

Perhaps our bodies do not produce enough interferon?

To me, my reaction was amazing, and something worth

researching. My doctor is a researcher/professor and

I think he, too, was very interested in my reaction.

Other sites I have seen do suggest that asthmatics may

not produce adequate amounts of interferon.

But I really don't know.

Just another thing to think about...

Michele

--- truelori <lori@...> wrote:

> Michele, sorry to hear about all you have been

> through. I had never

> heard about IVIG treatment for this but I just read

> about it and I

> saw it is used sometime in severe asthma with high

> IgE levels. Do

> you normally have very high IgE? Have they ever

> considered a

> diagnosis of Churg-Strauss syndrome for you and/or

> checked for it?

>

> I have also never heard of helium with asthma! You

> certainly are

> educating me a lot tonight. I just hate that you've

> been through

> such hell.

>

> What does interferon have to do with the pneumovax

> vaccine? I do

> find that very interesting the vaccine caused your

> symptoms to go

> away!

>

> So if I understand you right, they weren't able to

> go up higher on

> the aspirin than a baby aspirin, and you stopped

> taking it again?

> That's what makes me wonder if you don't have

> Samters but perhaps

> something like Churg-Strauss (which has many of the

> same symptoms of

> Samters). I still think Churg-Strauss may be

> underdiagnosed, and I

> often have wondered if Samters is just a subset of

> Churg-Strauss.

> But I think many do not have high IgE levels (in the

> past mine has

> been elevated), which is part of the Churg-Strauss

> diagnosis.

>

> Anyway Michele, I am so sorry you've had to endure

> so much suffering

> and I hope something does start really helping soon

> so your day to

> day symptoms can really be improved!

>

> Lori

>

>

>

>

>

>

__________________________________________________

[Guest guest]

N.o asa sens with Churg Strauss Carol Re: Re: aspirin desensitization

Hi Lori,

Does Churg-Strauss have an aspirin sensitivity too?

I haven't been tested for it.

They believe I have an immune defienciency, so that's

why they are trying the IVIG. It's controversial as

far as asthma. But for those with low subclass Igg 1

& 3 and aspirin sensitivity, it works very well.

And it's the least toxic way to treat asthma in some

cases (instead of steriods). I'll let you know if

mine improves. People who are having trouble

conquering their Samter's symptoms might ask for to

get their immune levels tested.

I'm not sure about interferon. What my doctor said is

that my reaction to the second vaccination made sense

because of the interferon. Maybe my body let off a

bunch of interferon. But I felt completely NORMAL.

It was so wonderful! But only for a short time.

Yeah, the helium. I didn't know what was going on,

all I knew was that my asthma was getting worse in the

ER room and the doctors (who all know me by now)

started to panic. And in came these large tanks....

and I was kind of out of it by then... but then a

little later, they asked how I was doing and I talked

like Mickey Mouse. But it worked. The nurses told me

whenever they see the helium tanks it's not a good

sign. That means they are close to having to use the

tubes. SO everyone was happy the helium worked that

time.

I read that you, too, Lori are having your own trials.

I hope everything is going good for you. You are so

strong and I know you'll get through it!! But still

it must be tough some days. When I go to get my IVIG,

I go to a cancer infusion center... and I have to say

the people there are some of the happiest people. I

guess they realize what life is truly about.

Michele

--- truelori <loritruelori (DOT) com> wrote:

> Michele, sorry to hear about all you have been

> through. I had never

> heard about IVIG treatment for this but I just read

> about it and I

> saw it is used sometime in severe asthma with high

> IgE levels. Do

> you normally have very high IgE? Have they ever

> considered a

> diagnosis of Churg-Strauss syndrome for you and/or

> checked for it?

>

> I have also never heard of helium with asthma! You

> certainly are

> educating me a lot tonight. I just hate that you've

> been through

> such hell.

>

> What does interferon have to do with the pneumovax

> vaccine? I do

> find that very interesting the vaccine caused your

> symptoms to go

> away!

>

> So if I understand you right, they weren't able to

> go up higher on

> the aspirin than a baby aspirin, and you stopped

> taking it again?

> That's what makes me wonder if you don't have

> Samters but perhaps

> something like Churg-Strauss (which has many of the

> same symptoms of

> Samters). I still think Churg-Strauss may be

> underdiagnosed, and I

> often have wondered if Samters is just a subset of

> Churg-Strauss.

> But I think many do not have high IgE levels (in the

> past mine has

> been elevated), which is part of the Churg-Strauss

> diagnosis.

>

> Anyway Michele, I am so sorry you've had to endure

> so much suffering

> and I hope something does start really helping soon

> so your day to

> day symptoms can really be improved!

>

> Lori

>

>

>

>

>

>

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