Samter's Triad/sinus problems/asthma

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bluedaisy
Posts: 1
Joined: Sun Feb 22, 2009 4:25 pm

Post by bluedaisy » Sun Feb 22, 2009 11:35 pm

I have had aspirin triad for 20 years, I first noticed an aspirin allergy around the age of 17, I was experiencing angiodema at the time and it took some time before I came to realise that it the angiodema was caused by aspirin.

It is important for me to mention to you that the angiodema did not occur immediately after taking the aspirin but over the course of 12-24 hours.

The angiodema then took around 48 hours to disappear. It usually occured in the thumb, spreading to the hands and then up the arm to the elbow area before it began to reduce. However , the swellings would also occur in the side of my hip, back of the legs, tongue, lips. I am assuming that it could flare up anywhere really.

Years later around the age of 27 I discovered I had a really bad reaction to NSAIDS I took a Nurofen pill for a headache and my nasal pssages swelled aggressively. Around this time I also developed bronchitis and have suffered with asthma ever since. It was also around this time that I began to lose my sense of smell.

Now at the age of 37, I have huge nasal polyps which have been confirmed by scan. I have absolutely no sense of smell or taste, except on rare occasions where it suddenly comes back for a few days with no explanation or obvious cause. I have allergy to aspirin and NSAIDS and I am not to keen on taking paracetamol either as they seem to irritate my airways. I have continual asthma.

The nasal polyps are keeping me awake at night as I cannot breathe

My question is, do you think I would be a suitable candidate for aspirin desensitization?

I am concerned because of the angiodema symptoms, I feel a great anxiety towards taking an aspirin which may potentially kill me. However, I really want the nasal polyps to disappear I want to be able to smell and taste again.

Any information would be very gratefully received.
deb x

NavyMustang
Posts: 1
Joined: Thu Feb 26, 2009 8:50 am

Post by NavyMustang » Thu Feb 26, 2009 2:08 am

I began developing sinus problems four years ago at 32 and lost all sense of smell and taste about three years ago. Just about two years ago, I was told that I had several polyps. By the beginning of last year I couldn't breathe through my nose and had to have polyps removed.

Last August, I had to undergo sinus surgery. Just over a couple of months later, I started having breathing problems and was told that I have asthma as well.

It wasn't until this past weekend when I had a severe alaphylactic reaction to aspirin (which INCLUDED severe hives and, much like the other symptopms was quite sudden and unexpected - never had a problem before) that I was told by an allergist of this thing called "Samter's Triad".

A Google search brought me here. My allergist mentioned aspirin desensitivation but said that it should be a last resort. I'd give just about anything to smell and taste again (only Prednisone helps now).

Is the desensitivation a complicated process? "miche", did you have problems with smell and taste and has it returned? This would be my main reason for doing it so any information would be greatly appreciated.

bluedaisy - I'd be really interested to hear anything that you're able to come up with. Your symptoms sound pretty similar. Funny, this is really the first I've ever heard of anyone else suffering from all of these things too.

Thanks!

Laura Jane
Posts: 1
Joined: Thu Feb 26, 2009 7:39 pm

Post by Laura Jane » Thu Feb 26, 2009 12:47 pm

I also have Samter's triad. I only went through one surgery to remove polyps, and have vowed to not do it again. I just found out that my sinuses are inflammed and swollen again. My allergist is going to do the aspirin desentization and I am trying to be hopeful that this will help me. My biggest concern is taking aspirin daily afterwards, and how it will impact my stomach. The idea of not having all these problems sounds very inviting.

rob g
Posts: 2
Joined: Thu Mar 19, 2009 5:18 pm

Post by rob g » Thu Mar 19, 2009 11:12 am

I have suffered with all off these issues for 7 years now.Sinus surgery did nothing for me.I could breath better for about 6 months and polyps reapeared!Never regained sense of smell or taste.Although I have researched polyps and sinus issues online,I never came across Samter's Triad.Only after frustration with medical system in Canada,I booked appt at Mayo to hopefully get answers!This is where I learned of aspirin desensitization and Samter's.All these so called specialists never listened or understood when I told them of reaction to ibuprophen and aspirin.Can't wait to try this treatment!

russ O
Posts: 1
Joined: Tue Mar 24, 2009 8:59 pm

Post by russ O » Tue Mar 24, 2009 3:03 pm

Oh my goodness, I have suffered with the same symptoms for over 20 years with 4 sinus surgerys for nasal polyps. My polyps have returned once again. I have had no sense of smell or taste for years. I live with congestion,weezing,coughing and sleepless nights. I am very interested in learning more about any and all potential treatments that may prevent my polyps and stuffiness from returning. It sounds like asprin desensitization may provide some relief. Is there anyone else that has had success with this or any other remedies? Thank you

rob g - I am very interested in hearing how your treatment helps you. Good luck!

AWalker
Posts: 1
Joined: Fri Apr 17, 2009 3:47 pm

Post by AWalker » Fri Apr 17, 2009 9:11 am

Jacqui,
I have had 5 sinus surgeries since 1989. I discovered my aspirin allergy in 1984. The last FESS was performed this year. My ENT does not believe that aspirin desensatization will help. I believe it is worth trying. I have contacted an Allergy Clinic and they think it will help. What was the timeline and protocol of the desensatization? What is your maintenance dose of aspirin? How do you handle surgeries that require being off of aspirin? Thanks
AWalker

rob g
Posts: 2
Joined: Thu Mar 19, 2009 5:18 pm

Post by rob g » Sun Apr 26, 2009 6:45 am

They do suggest getting polyps removed again before procedure. However another option is a longer,1 month dose of prednisone to shrink them first.I've opted to skip surgery because of long wait in Canada(up to 2 years) and because I can't wait to try this.I'm going in on June the 8th.Will keep you posted.

Kathy0901
Posts: 1
Joined: Sat May 02, 2009 10:58 am

Post by Kathy0901 » Sat May 02, 2009 4:02 am

I saw your posting and I struggle horribly everyday. My polyps come back every time and I can't take it. What is this other treatment?

Originally posted by miche:
Anyone suffer from Samter's Triad? I have had 2 sinus surgeries and my polyps came back each time. I decided to try a different treatment that has been studied recently by the allergy community and it has been successful for me! I became desensatized to aspirin, which I was allergic to, thru a doctors care, and my polyps are gone and so are my allergies!

If you have nasal polyps and surgery hasn't helped, shoot me a message and I can fill you in.

Jacqui

bvanmass
Posts: 1
Joined: Mon Aug 10, 2009 5:50 pm

Post by bvanmass » Mon Aug 10, 2009 10:51 am

Originally posted by miche:
Anyone suffer from Samter's Triad? I have had 2 sinus surgeries and my polyps came back each time. I decided to try a different treatment that has been studied recently by the allergy community and it has been successful for me! I became desensatized to aspirin, which I was allergic to, thru a doctors care, and my polyps are gone and so are my allergies!

If you have nasal polyps and surgery hasn't helped, shoot me a message and I can fill you in.

Jacqui

miche
Posts: 5
Joined: Mon Oct 09, 2006 5:25 pm

Post by miche » Mon Aug 17, 2009 8:46 am

So sorry for not replying to this sooner. Life is so busy and now that I am virtually polyp, infection, and asthma free and I don't have anxiety about my health anymore.

Ok,my aspirin desensitization was done at Scripps Clinic in San Diego by Dr. Ron Simon, who was one of the pioneers of this treatment. I was at the clinic for 2 days under constant medical supervision. I was given tiny amounts of aspirin every hour until I reached a pretty high dose and could tolerate it. I had a mild reaction the first day of itching in my ears. Some people may have a more severe reaction, but you're in a hospital setting and if anything happens they take care of it before it gets serious. Some patients may take longer, I think up to 7 days to be desensitized. Now I am on a maintanence dose of aspirin from anywhere to 325 to 1300mg of aspirin a day. I know, that sounds crazy, but I have had no problems. I have strict guidelines from Dr. Simon if I should encounter any stomach issues. I always take aspirin w/food, I get a liver function, blood test, etc every year at my physical. To me, I would rather take aspirin than steroids or huge doses of antibiotics all the time. I have had 1 sinus infection in 3 years and had to take antibiotics, but that's to be expected, I am a flight attendant and exposed to every illness around, not to mention the constant fluctuation of altitudes.
My allergist was very supportive of the procedure, but my ENT told me he'd doubt I would have any success. In fact, I made my decision to do this after seeing my ENT for ear tubes. I couldn't take it anymore, I was going to have to quit my job, and my anxiety was out of control. I got on a plane the next day and went to see Dr. Simon,(I live in Atlanta).
I had United Health Care and they paid for everything except my $20 copay to see Dr. Simon. If you have any questions, just "google" Dr. Ronald Simon and you will find all the info you need. You can call and talk to a nurse, they are very informative and can answer any questions you have. There may be other doctors around the country that do this procedure, at least check this out if you are suffering. I still take Singulair and Nasonex, but that's acceptable to me. Like I said, I was concerned with losing my job, taking steriods and high doses of antibiotics, and more surgeries for the rest of my life, so the trade off of taking aspirin everyday was worth it.

Good luck to anyone and I feel for anyone who lives with this crappy chronic condition. Shoot me an email if you have any other questions.
jacqui.young@att.net

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