Aspirin Desensitization

[Guest guest]

Sorry I didn't realize if you had aspirin sensitivity you don't have

Churg-Strauss because I thought there was overlap between the two.

Sorry if I confused the issue!

Lori

>

>

>

> > 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]

Dennis,

Where do you live? My experience with Samters is similar sounding. Most of my issues are sinus related. Asthma is not my problem. I have had many surgeries and continue to suffer from reoccurring sinus infections. I have no sense of smell. My allergist will not support aspirin desensitization. 2 other allergists I've seen have had NO success desensitizing Samters patients. Very discouraging. I live in Massachusetts.

Anybody know of a "local" doctor they'd recommend. I am getting discouraged. I do all of the things you recommend Dennis, and try to live my life and be happy, but it can be tough. I feel like desensitization is the only thing left to try.

Thanks

Stacey

Aspirin Desensitization

Aspirin desensitization is the best treatment for me!I have had Samter's Triad for more than 25 years. Clinical diagnosed by three different physicians. I have had seven surgeries, including Caldwell-Luc and Windows.Without Aspirin, my polyps would return is less than four months after surgery. I lived for many years dependent on Kenalog (Steroids) injection every 8 to 16 weeks.Past treatments - You name it, I tried it.I was desensitized in April of 2007 (Surgery in March 2007) and I still have no Polyps. I have my sinuses "scoped" ever six months. Nothing like having a long fiberoptic tube shoved up your nose! I do NOT have a SOS, but my life is much better.My medicines for Samter's are:Aspirin 1300mg daily - no problemsSingulair 20mg - 10mgs morning and nightFlonase 2 puffs daily each sideAdvair 125 once dailyClaritin 10mg - 2 days on, 1 day off, 2 days on, 2 days off -repeatProventil - if and as needed - none in the last 2+ yearsMy recommendations for everyone with this Samter's:Get two good doctors - ENT and AllergyBe totally open and honest with you doctors- tell them everything - develop a treatment plan and follow it!!!Keep good notes on you condition and symptoms - take this with you to medical appointmentsWrite questions down - take this with you to medical appointments - be ready for your appointments!Eat healthily - fruits, vegetables, good fatsExercise and maintain a healthy weight - diets do not work - if you need to lose weight, change your life style - I did.Remember - there is any cure (YET) so live your life to it's full potential - do not let this chronic condition rule your life!I still have symptoms - and stuff still comes out of my nose (and I still don't believe some of the stuff that comes out, but I'm much, much improved and I'm not on Steroids and I'm not having surgeries.Dennis

[Guest guest]

Stacey, I live in NH and have a great

allergy person (Dr. Roelofs) but he could not do a desensitization here.

He sent me to Dr. Alena Banerji at Mass General. It has been a very positive

experience. Be persistent, get the care you need!

From:

samters [mailto:samters ] On Behalf Of sutela@...

Sent: Monday, May 11, 2009 9:49 AM

samters

Subject: Re: Aspirin

Desensitization

Dennis,

Where do you live? My experience with

Samters is similar sounding. Most of my issues are sinus related.

Asthma is not my problem. I have had many surgeries and continue to

suffer from reoccurring sinus infections. I have no sense of smell.

My allergist will not support aspirin desensitization. 2 other allergists

I've seen have had NO success desensitizing Samters patients. Very

discouraging. I live in Massachusetts.

Anybody know of a " local " doctor

they'd recommend. I am getting discouraged. I do all of the things

you recommend Dennis, and try to live my life and be happy, but it can be

tough. I feel like desensitization is the only thing left to try.

Thanks

Stacey

Aspirin Desensitization

Aspirin desensitization

is the best treatment for me!

I have had Samter's Triad for more than 25 years. Clinical diagnosed by three

different physicians. I have had seven surgeries, including Caldwell-Luc and

Windows.

Without Aspirin, my polyps would return is less than four months after surgery.

I lived for many years dependent on Kenalog (Steroids) injection every 8 to 16

weeks.

Past treatments - You name it, I tried it.

I was desensitized in April of 2007 (Surgery in March 2007) and I still have no

Polyps. I have my sinuses " scoped " ever six months. Nothing like

having a long fiberoptic tube shoved up your nose! I do NOT have a SOS, but my

life is much better.

My medicines for Samter's are:

Aspirin 1300mg daily - no problems

Singulair 20mg - 10mgs morning and night

Flonase 2 puffs daily each side

Advair 125 once daily

Claritin 10mg - 2 days on, 1 day off, 2 days on, 2 days off -repeat

Proventil - if and as needed! - none in the last 2+ years

My recommendations for everyone with this Samter's:

Get two good doctors - ENT and Allergy

Be totally open and honest with you doctors- tell them everything - develop a

treatment plan and follow it!!!

Keep good notes on you condition and symptoms - take this with you to medical

appointments

Write questions down - take this with you to medical appointments - be ready

for your appointments!

Eat healthily - fruits, vegetables, good fats

Exercise and maintain a healthy weight - diets do not work - if you need to

lose weight, change your life style - I did.

Remember - there is any cure (YET) so live your life to it's full potential -

do not let this chronic condition rule your life!

I still have symptoms - and stuff still comes out of my nose (and I still don't

believe some of the stuff that comes out, but I'm much, much improved and I'm

not on Steroids and I'm not having surgeries.

Dennis

[Guest guest]

Hi

I think you & I emailed on this before! I did go to see Banerji. She didn't give me confidence that it would work, she had only done 6 desensitizations total (not much!). And most were not succesful. And, the meds she wanted to put me on prior to a desensitization, I did not qualify for...ins. wouldn't cover. UGH.

Thanks

Stacey

Aspirin Desensitization

Aspirin desensitization is the best treatment for me!I have had Samter's Triad for more than 25 years. Clinical diagnosed by three different physicians. I have had seven surgeries, including Caldwell-Luc and Windows.Without Aspirin, my polyps would return is less than four months after surgery. I lived for many years dependent on Kenalog (Steroids) injection every 8 to 16 weeks.Past treatments - You name it, I tried it.I was desensitized in April of 2007 (Surgery in March 2007) and I still have no Polyps. I have my sinuses "scoped" ever six months. Nothing like having a long fiberoptic tube shoved up your nose! I do NOT have a SOS, but my life is much better.My medicines for Samter's are:Aspirin 1300mg daily - no problemsSingulair 20mg - 10mgs morning and nightFlonase 2 puffs daily each sideAdvair 125 once dailyClaritin 10mg - 2 days on, 1 day off, 2 days on, 2 days off -repeatProventil - if and as needed! - none in the last 2+ yearsMy recommendations for everyone with this Samter's:Get two good doctors - ENT and AllergyBe totally open and honest with you doctors- tell them everything - develop a treatment plan and follow it!!!Keep good notes on you condition and symptoms - take this with you to medical appointmentsWrite questions down - take this with you to medical appointments - be ready for your appointments!Eat healthily - fruits, vegetables, good fatsExercise and maintain a healthy weight - diets do not work - if you need to lose weight, change your life style - I did.Remember - there is any cure (YET) so live your life to it's full potential - do not let this chronic condition rule your life!I still have symptoms - and stuff still comes out of my nose (and I still don't believe some of the stuff that comes out, but I'm much, much improved and I'm not on Steroids and I'm not having surgeries.Dennis

[Guest guest]

I get angry when I hear of doctors who will not even consider aspirin desensitization. Desens. for me has been a miracle. To go 2 years without any polyp growth is a miracle and one I would wish for anyone with this disease. My suggestion would be to continue looking at how you can medically do aspirin desens. You have to do desens. supervised. There is no way around that. It may mean finding another doctor who WILL support this.

Jane

From: sutela@... <sutela@...>Subject: Re: Aspirin Desensitizationsamters Date: Monday, May 11, 2009, 7:49 AM

Dennis,

Where do you live? My experience with Samters is similar sounding. Most of my issues are sinus related. Asthma is not my problem. I have had many surgeries and continue to suffer from reoccurring sinus infections. I have no sense of smell. My allergist will not support aspirin desensitization. 2 other allergists I've seen have had NO success desensitizing Samters patients. Very discouraging. I live in Massachusetts.

Anybody know of a "local" doctor they'd recommend. I am getting discouraged. I do all of the things you recommend Dennis, and try to live my life and be happy, but it can be tough. I feel like desensitization is the only thing left to try.

Thanks

Stacey

Aspirin Desensitization

Aspirin desensitization is the best treatment for me!I have had Samter's Triad for more than 25 years. Clinical diagnosed by three different physicians. I have had seven surgeries, including Caldwell-Luc and Windows.Without Aspirin, my polyps would return is less than four months after surgery. I lived for many years dependent on Kenalog (Steroids) injection every 8 to 16 weeks.Past treatments - You name it, I tried it.I was desensitized in April of 2007 (Surgery in March 2007) and I still have no Polyps. I have my sinuses "scoped" ever six months. Nothing like having a long fiberoptic tube shoved up your nose! I do NOT have a SOS, but my life is much better.My medicines for Samter's are:Aspirin 1300mg daily - no problemsSingulair 20mg - 10mgs morning and nightFlonase 2 puffs daily each sideAdvair 125 once dailyClaritin 10mg - 2 days on, 1 day off, 2 days on, 2 days off

-repeatProventil - if and as needed - none in the last 2+ yearsMy recommendations for everyone with this Samter's:Get two good doctors - ENT and AllergyBe totally open and honest with you doctors- tell them everything - develop a treatment plan and follow it!!!Keep good notes on you condition and symptoms - take this with you to medical appointmentsWrite questions down - take this with you to medical appointments - be ready for your appointments!Eat healthily - fruits, vegetables, good fatsExercise and maintain a healthy weight - diets do not work - if you need to lose weight, change your life style - I did.Remember - there is any cure (YET) so live your life to it's full potential - do not let this chronic condition rule your life!I still have symptoms - and stuff still comes out of my nose (and I still don't believe some of the stuff that comes out, but I'm much, much improved and I'm not on Steroids

and I'm not having surgeries.Dennis

[Guest guest]

I think oral aspirin would likely aggravate your GERD. There is an alternative used in Britain, topical lysine aspirin drops. That might be an alternative for you. See paper Abstract below:J Laryngol Otol. 2007 Dec;121(12):1156-60. Epub 2007 Aug 15.Intranasal lysine-aspirin administration decreases polyp volume in patients with aspirin-intolerant asthma.Ogata N, Darby Y, Scadding G.Department of Rhinology, Royal National Throat, Nose and Ear Hospital, London,UK.INTRODUCTION: Nasal polyposis associated with aspirin-intolerant asthma tends to be difficult to control, with frequent recurrences. We examined the effect ofintranasal lysine-aspirin administration on resistant nasal polyps of asthmatic, aspirin-intolerant patients, when used in addition to routine therapy. PATIENTSAND METHODS: Thirteen patients with asthma and intolerance to aspirin wererecruited. All but one had undergone numerous polypectomies and were uncontrolledon standard therapy with intranasal corticosteroids, leukotriene receptorantagonists and nasal douching. Aspirin treatment involved one drop (100 microl) of 30 mg/ml lysine-aspirin solution to each nostril, initially daily, increasedevery two or three days up to a maximal of 18 drops (54 mg lysine-aspirin) a day.Nasal symptoms, nitric oxide level, nasal inspiratory peak flow rate, peakexpiratory flow rate and nasendoscopic grading were assessed prior to therapy andthree months later. We also compared the change in endoscopic polyp scores duringthree months of lysine-aspirin administration with the changes which had occurredduring the three months prior to administration (during which time othertherapies had been identical). RESULTS: Nasal blockage symptoms tended todecrease; other nasal symptoms were unchanged. Significant changes were seen innasal inspiratory peak flow rate (103.3 +/- 18.9 and 140.0 +/- 16.7 l/min before and after aspirin, respectively; p = 0.014), but not in peak expiratory flow rate(438.7 +/- 33.4 and 440.0 +/- 28.4 l/min before and after aspirin, respectively; p = 0.700). Nasal nitric oxide levels rose significantly (in both sides, p =0.028). Expired chest nitric oxide levels did not change. Nasal polyp scores onnasendoscopic examination were significantly reduced (right side, p = 0.027; leftside, p = 0.018). Compared with the preceding three months, adding intranasallysine-aspirin application had the effect on decreasing nasal polyp volume (rightside, p = 0.031; left side, p = 0.016). CONCLUSION: This open study suggests thatintranasal lysine-aspirin administration reduces nasal polyp volume inaspirin-intolerant patients, without any adverse affect on concomitant asthma.This was a preliminary study and should be followed by a placebo-controlled,double-blind trial.>> I was diagnosed with Samter's about two years ago and underwent endosccopic surgery about six months ago. I've been prescribed qvar, nasal spray, and singulair and I have been feeling OK. Fortunately no signs of sinus infections. Of course, like many of you, I have lost all sense of smell.> > So, anyway, I am looking into aspirin desensitization and wanted to know how it might affect my stomach. I have chronic GERD, which is another common problem with asthma. Someone mentioned that aspirin actually helps with GERD. Is this true? The reason I ask is that I don't wish to participate in a program of aspirin desensitization unless I am able to complete the program.>

[Guest guest]

I also have reflux which I blame for sinus and lung inflammation. I

have read that it is good practice to take a reflux med with the aspirin

to prevent stomach upset. I take Aciphex with enteric coated aspirin daily.

We can't predict how well you will do with aspirin. Some have had

problems. Do you remember tolerating it well before?

Pam

shermanackerson wrote:

> I was diagnosed with Samter's about two years ago and underwent endosccopic

surgery about six months ago. I've been prescribed qvar, nasal spray, and

singulair and I have been feeling OK. Fortunately no signs of sinus infections.

Of course, like many of you, I have lost all sense of smell.

>

> So, anyway, I am looking into aspirin desensitization and wanted to know how

it might affect my stomach. I have chronic GERD, which is another common

problem with asthma. Someone mentioned that aspirin actually helps with GERD.

Is this true? The reason I ask is that I don't wish to participate in a program

of aspirin desensitization unless I am able to complete the program.

>

>

>

> ------------------------------------

>

>

[Guest guest]

My sense of smell has returned to 50-75% of what others can smell. It's

a little foggy because I didn't have that sense for more than 25 years.

I can smell gas leaks, baking bread and other obvious scents. I can't

walk into a garden and notice that the lilacs are blooming before I see

them, for example. The other advantage is being able to take Ibuprofen

for pain or fever relief.

Your symptoms were relatively mild. Desensitization may be worth a

trial. Talk to your doctor about the PPI. Prilosec never helped me.

I've read that doubling the dose may have helped. Pay close attention

to your GI symptoms so that you can stop before damage sets in.

Pam

Sherman Ackerson wrote:

>

>

> Yes, I used to take both aspirin and ibuprofen on a regular basis.

> However, I took aspirin less often, mostly just a quarter of a tablet

> for the heart. Neither of these NSAIDS used to bother me until a

> couple of years ago when I noticed that every time I took ibuprofen I

> would feel tight in the chest (wheezing), my nose would run and I

> developed a lot of lower (yes, way lower) intestinal distress.

> Anyway, I will probably have to take a PPI (Prilosec) along with the

> aspirin to protect the stomach. The main reason for taking aspirin is

> to have some sense of smell., since I currently cannot smell anything,

> and I miss my smell memories. Does your sense of smell improve with

> aspirin?

> ------------------------------------------------------------------------

> *From:* Pamela <pam@...>

> *To:* samters

> *Sent:* Sun, October 4, 2009 5:36:07 PM

> *Subject:* Re: Aspirin desensitization

>

>

>

> I also have reflux which I blame for sinus and lung inflammation. I

> have read that it is good practice to take a reflux med with the aspirin

> to prevent stomach upset. I take Aciphex with enteric coated aspirin

> daily.

>

> We can't predict how well you will do with aspirin. Some have had

> problems. Do you remember tolerating it well before?

>

> Pam

>

> shermanackerson wrote:

> > I was diagnosed with Samter's about two years ago and underwent

> endosccopic surgery about six months ago. I've been prescribed qvar,

> nasal spray, and singulair and I have been feeling OK. Fortunately no

> signs of sinus infections. Of course, like many of you, I have lost

> all sense of smell.

> >

> > So, anyway, I am looking into aspirin desensitization and wanted to

> know how it might affect my stomach. I have chronic GERD, which is

> another common problem with asthma. Someone mentioned that aspirin

> actually helps with GERD. Is this true? The reason I ask is that I

> don't wish to participate in a program of aspirin desensitization

> unless I am able to complete the program.

> >

> >

> >

> > ------------ --------- --------- ------

> >

> >

[Guest guest]

I started with a quarter of a baby aspirin. About 20 mg. I guess even lower as suggested at 5 mg will be even better.

Re: Aspirin Desensitization

Lori,

You could start with 5 mg. We have some here that were as reactive as

you and were desensitized. You are right not to give up so quickly.

Pam

howardb@... wrote:

> Hi, just wondering if anyone has been told that they were an unsuitable

candidate for aspirin desensitization? I had a fairly severe allergic reaction

to 30 mg of aspirin on day 1 of the protocol. If so, what did you do? I do not

want to give up so quickly on this therapy. I would appreciate any advice.

Thanks. Lori in St. Louis, MO

> Sent on the Sprint® Now Network from my BlackBerry®

>

> ------------------------------------

>

>

[Guest guest]

Interesting! What doctor do you see? I am in St. Louis and was desensitized by

Dr. Slavin at SLU. He had me take Singular, prednisone, and Symbocort for about

two weeks before the process.

I had a pretty severe reaction at 81mg, was treated, and sent home for the day.

We did Benedryl and a nebulizer treatment in his office. I think I filled a

entire trash can with tissues that night. They next morning we repeated the

81mg, and I was fine. I did not react again.

A reaction (often severe) is part of the desense process. Dr. Slavin is very

knowledgeable about Samters (AERD). He actually knew and worked with Max Samter.

It warms his heart to hear that we all refer to this as Samter's Triad since the

clinical name is AERD.

>

> Hi, just wondering if anyone has been told that they were an unsuitable

candidate for aspirin desensitization? I had a fairly severe allergic reaction

to 30 mg of aspirin on day 1 of the protocol. If so, what did you do? I do not

want to give up so quickly on this therapy. I would appreciate any advice.

Thanks. Lori in St. Louis, MO

> Sent on the Sprint® Now Network from my BlackBerry®

>

[Guest guest]

I'm working on getting my desense treatment approved and scheduled. I have my

next Polyp surgury scheduled for Dec 28, 2010. The earliest I can start the

Desense treatment would be in February (if at all). I've heard of people already

getting polyps back after a few months. Should I cancel my surgury until I can

be certain that the dense treatment is within a few weeks post-op? What is my

window post op to get the best out of the desensing?

Thanks,

Steffen

>

> I would like to hear from anyone who has done this. I'm not sure there's a doc

near my home who can do this- will I feel like driving an hour to get home after

the treatment?

> Also, I've read that insurance may not cover this procedure. What's been your

experience?

> Thanks, yvette

>

[Guest guest]

Hi Steffen2 to 6 weeks post-op is the best time to do your desens. I've started my desens 3 weeks post-op and 6 days later I was fully desensitized. I had to take it slowly due to asthma attacks and I had been on Singulair prior to that. It is very important to keep your asthma under control before desens (if it's the case). Some allergists are prescribing prednisone instead of singulair, so a short burst of prednisone might work. Your FEV1 should be over 90%, so be tested for that after surgery.Sergiu L., M.D._______________________________________________________________________________Light travels faster than sound. That's why some people appear bright until you hear them speak.From: nina_steffen1999 <neumann.steffen@...>Subject: Re: Aspirin Desensitizationsamters Date: Wednesday, December 22, 2010, 7:26 PM

I'm working on getting my desense treatment approved and scheduled. I have my next Polyp surgury scheduled for Dec 28, 2010. The earliest I can start the Desense treatment would be in February (if at all). I've heard of people already getting polyps back after a few months. Should I cancel my surgury until I can be certain that the dense treatment is within a few weeks post-op? What is my window post op to get the best out of the desensing?

Thanks,

Steffen

>

> I would like to hear from anyone who has done this. I'm not sure there's a doc near my home who can do this- will I feel like driving an hour to get home after the treatment?

> Also, I've read that insurance may not cover this procedure. What's been your experience?

> Thanks, yvette

>

[Guest guest]

My insurance did cover it -- it is no longer considered an experimental treatment by most. I also had to drive an hour home afterwards -- no problem. That said, it's not a particularly fun experience. And usually takes two days.On Dec 21, 2010, at 7:23 PM, yvtt_m wrote:

I would like to hear from anyone who has done this. I'm not sure there's a doc near my home who can do this- will I feel like driving an hour to get home after the treatment?

Also, I've read that insurance may not cover this procedure. What's been your experience?

Thanks, yvette

[Guest guest]

Has anyone in the group gone through aspirin desensitization? If so, are

you taking aspirin to control the symptoms, currently? Is it working?

Do you notice a significant improvement?

[Guest guest]

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that.

Aspririn desens worked so far for me, will have to wait for the long term effects.

There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma. Thanks, Rob.From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin

Desensitization

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that.

Aspririn desens worked so far for me, will have to wait for the long term effects.

There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

A number of us have little or no asthma -- but all the other Samter's issues -- polyps, salicylate sensitivity, etc.On Sep 8, 2011, at 1:01 PM, Darcie Coe wrote:

Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma. Thanks, Rob.From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin

Desensitization

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that.

Aspririn desens worked so far for me, will have to wait for the long term effects.

There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

I have asthma, as part of Samter's, but is has been fully controlled with Serevent and Flovent for over a decade. I had major aspirin sensitivity, reaction to some foods, not all sals, very bad rhinitis, reactions to changes in weather/barometric pressure, ear infections (tubes), and sinus infections, constantly. It was pretty bad.

samters From: darciecoe@...Date: Thu, 8 Sep 2011 12:01:26 -0700Subject: Re: Aspirin Desensitization

Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma.

Thanks, Rob.

From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin Desensitization

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that. Aspririn desens worked so far for me, will have to wait for the long term effects.There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

I'm not being a jerk here so don't take it that way. But Samter's TRIAD means you have all three. Aspirin sens, Asthma and Nasal polyps. If you have two of those, but other issues, then you have similar issues, but not Samter's Triad. Unless someone is going to tell me it isn't called that.

It doesn't really matter what you call it... it's still miserable

Crusher

From: joan harvey <thomyris7@...>samters Sent: Thursday, September 8, 2011 2:06 PMSubject: Re: Aspirin Desensitization

A number of us have little or no asthma -- but all the other Samter's issues -- polyps, salicylate sensitivity, etc.

On Sep 8, 2011, at 1:01 PM, Darcie Coe wrote:

Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma.

Thanks, Rob.

From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin Desensitization

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that. Aspririn desens worked so far for me, will have to wait for the long term effects.There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

I've been diagnosed with asthma, but don't really have symptoms in general. I definitely have Samter's, clearly diagnosed by specialists. People manifest in different ways, and a number of other people on this site definitely have Samter's but the asthma component is minimal. Polyps and salicylate sensitvity are primary. Perhaps if my Samter's had not been treated I'd have worse asthma. Some desensitized people have almost no symptoms -- but they still have the disease.On Sep 9, 2011, at 5:07 PM, Crusher Miler wrote: I'm not being a jerk here so don't take it that way. But Samter's TRIAD means you have all three. Aspirin sens, Asthma and Nasal polyps. If you have two of those, but other issues, then you have similar issues, but not Samter's Triad. Unless someone is going to tell me it isn't called that. It doesn't really matter what you call it... it's still miserable Crusher From: joan harvey <thomyris7@...>samters Sent: Thursday, September 8, 2011 2:06 PMSubject: Re: Aspirin Desensitization A number of us have little or no asthma -- but all the other Samter's issues -- polyps, salicylate sensitivity, etc. On Sep 8, 2011, at 1:01 PM, Darcie Coe wrote: Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma. Thanks, Rob. From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin Desensitization I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that. Aspririn desens worked so far for me, will have to wait for the long term effects.There is a huge amount of info on this board re aspirin desens, you should search. > samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

I agree Crusher. All the ENT's I've visited over the years have all said that the 'triad' is the asthma, polyps and aspirin allergy. Hence the name 'triad'.samters From: crusher75060@...Date: Fri, 9 Sep 2011 16:07:17 -0700Subject: Re: Aspirin Desensitization

I'm not being a jerk here so don't take it that way. But Samter's TRIAD means you have all three. Aspirin sens, Asthma and Nasal polyps. If you have two of those, but other issues, then you have similar issues, but not Samter's Triad. Unless someone is going to tell me it isn't called that.

It doesn't really matter what you call it... it's still miserable

Crusher

From: joan harvey <thomyris7@...>samters Sent: Thursday, September 8, 2011 2:06 PMSubject: Re: Aspirin Desensitization

A number of us have little or no asthma -- but all the other Samter's issues -- polyps, salicylate sensitivity, etc.

On Sep 8, 2011, at 1:01 PM, Darcie Coe wrote:

Hi . Were you reacting to most foods(salicylate containing or related)? How were you diagnosed with Samter's? The reason I ask is because Samter's, by definition, includes asthma.

Thanks, Rob.

From: <skydancer1@...>samters Sent: Thursday, September 8, 2011 11:01 AMSubject: RE: Aspirin Desensitization

I had aspirin desens recently and it has made a huge difference in my symptoms. No more runny noses, sneezing, itchy ears, which was a daily issue. I sleep much better. (asthma was never a problem). Started on 1300 mgs/day, after a month went down to 625/day. Feeling pretty good so far, other than a chronic sinus infection which was there before the desens. Being treated for that. Aspririn desens worked so far for me, will have to wait for the long term effects.There is a huge amount of info on this board re aspirin desens, you should search.

> samters > From: annboucher@...> Date: Thu, 8 Sep 2011 16:44:56 +0000> Subject: Aspirin Desensitization> > Has anyone in the group gone through aspirin desensitization? If so, are> you taking aspirin to control the symptoms, currently? Is it working? > Do you notice a significant improvement?> > > > ------------------------------------> >

[Guest guest]

My asthma was so bad along with the allergies that I nearly forgot I had the polyps! I was so focused on not being able to breath or to not be too far from my nebulizer in case I had an attack.... Samter's is clearly all three and if someone has their asthma under control, yay for them!

[Guest guest]

Seretide(name in uk). Changed my life and I no longer think that I am asthmatic

unless I forget to use. Still cursed with polyps

Sent from my iPad

[Guest guest]

I agree ,I'm on seretide too and it's the best puffer for asthma (for me!). I also find montelukast really helps, and mainly, my asthma has been reduced significantly by aspirin desense. So much so, that I haven't had a chest infection since before I was desense...and before that I struggled with bad chest infections for about 1/3 of every year that I've had Samters.BeckyFrom: Cave <cavenoo@...>To:

"samters " <samters >Sent: Saturday, 10 September 2011, 7:13Subject: RE: Aspirin Desensitization

Seretide(name in uk). Changed my life and I no longer think that I am asthmatic unless I forget to use. Still cursed with polyps

Sent from my iPad

[Guest guest]

V interested in desense as my consultant has recommended it. I was on a mild steroid for 15 years with no polyps but there was a manufacturing problem so it was not available hence return of the p's. Been told if I stayed on the steroid I would grow 2 heads or worse hence recommendation for desense. Must say v worried about it but if works will be a miracle Sent from my iPadOn 10 Sep 2011, at 08:18, Bannister <beckyb256@...> wrote:

I agree ,I'm on seretide too and it's the best puffer for asthma (for me!). I also find montelukast really helps, and mainly, my asthma has been reduced significantly by aspirin desense. So much so, that I haven't had a chest infection since before I was desense...and before that I struggled with bad chest infections for about 1/3 of every year that I've had Samters.BeckyFrom: Cave <cavenoo@...>To:

"samters " <samters >Sent: Saturday, 10 September 2011, 7:13Subject: RE: Aspirin Desensitization

Seretide(name in uk). Changed my life and I no longer think that I am asthmatic unless I forget to use. Still cursed with polyps

Sent from my iPad