Samter's Triad Syndrome (Page 4)

I developed Samter's more than 20 years ago (I am 61 y/o). Since then, I have had 4 nasal surgeries. Except for brief periods during steroid burst therapy, I have no sense of smell. I irrigate my sinuses twice daily, but still have problems with a thick, gooey nasal mucous, nasal congestion, and post nasal drip.

One week ago I completed a two day aspirin desensitization. So far, the results have been spectacular! At the end of the second day I got my sense of smell back. I have little or no nasal swelling, and the thick mucous discharge has abated. I can not beleive the difference in such a short period of time.

The desense experience was not that bad either. Started with 20mg, and doubled the dosage every 90 minutes. First reaction was at 80mg, and each dose thereafter up to 650mg. However reactions were controllable, and I never felt that I was in any danger (as opposed to the first time that I reacted to aspirin, which was almost fatal).

I would encourage anyone with Samter's to consider this treatment. I wish I would have know about it 20 years ago.

I went through desensitization 4 years ago and take 1300 mg of Ascriptin daily. While this is working really well for the most part I am having really heavy periods and am wondering if anyone else is having the same problem and if so what you are doing for it.

Hi too have Samter's triad. I am going in for my 5th surgery in 22 months, in two weeks. All my symptoms started up shortly before my 30th birthday, following the birth of my daughter. I cannot smell, or taste. When my daughter was 3 weeks old, I started getting really congested. I was nursing and nervous about taking anything. By the time she was 7 weeks I went into the Drs. office w/ a double ear infection, bronchitis, sinus infection and allergy sympotoms. 4 months later, I spotted what looked like a polyp in my nose. Before I had the chance to go to my doctors office, I took an Advil, which caused me to projectial vomit and asthma symptoms. All of this was new to me. I had shown some slight allergy symptoms, but ran 5 miles a day until I was about 6 months pregnant. I am now seeing a new ENT at National Jewish and meet next week w/ a specialist about asprin desensitization. What I am reading here is making me nervous. Will update you and let you know how it goes. When I can. I do sinus rinses twice daily.

Hi I have Sampters as well, starting right after the birth of my daughter, im miserable, did u try the aspirin desensitization??

Samter's syndrome

Hi to you all, i have not yet been diagnosed with samters syndrome as i am from the uk and there is not a lot of information about samters around. I have been sufering with the symptoms that you are describing for the last 20 years and after 4 opperations nothing seems to work, i have been given prednialone steroid tablets by my doctor today thay do relive my symptome but only short term. i also have asthma and a asprin alergy along with other formes of pain killers. I am going back to the doctors in a few weeks i would like to be armed with as much information as possible could you help please?

I was diagnosed with Samter's about three years ago after suffering for many years with upper respiratory infections and sinus infections resulting in three sinus surgeries and one experience with an allergic reaction to Aleve. I underwent aspirin desensitization about two years ago. I take aspirin on a daily basis now along with Singular and Advair to control my asthma. Veramyst has helped with the nasal polyps. As long as I take my asthma medication, I very rarely get sick or develop flare ups of my asthma. Someone had asked about thyroid problems. I have hypothroidism but I don't know if the Samter's is connected to it. Anyway, I recommend the aspirin desensitization process to anyone suffering from Samter's. I think it has really worked for me.

i have sampters and hypothyroidism thanks for sharing your story. i havent found any relief yet, and havent tried asa desensitization.

My husband has had Samter's Triad for the past four years. He had asprin desensitization earlier this year and is on 1300 mgs of asprin a day, zyflo etc. Over the last couple of weeks he has started having severe tingling/pain in his arms, particularly his left arm, and pain/constriction across his chest and/or his back. This happens about once a week. He has had his heart checked out and all is well there. Does anyone else with Samter's have these symptoms?

HI, does anyone know of a clinic or an ENT/allergist who knows anything about Samter's Triad OR aspirin desensitation in Brevard county or even the Orlando area? Is there a link somewhere which lists doctors by state who deal with Samter's or even AERD? Thanks very much.

I have found an ENT that I highly respect in Brevard and has an outstanding reputation. He was able do diagnose a condition I had on target when no other doctor could. I just had surgery this past week and in the recovery room he mentioned that he saw signs of Samter's Triad. I will learn more on my post op visit. But I do highly recommend him. His name is Dr Timothy O'Hare in Melbourne with Space Coast Ear Nose and Throat.

To "find my own answers"
I have just recently been diagnosed with this disorder and during the allergy testing, the allergist noticed that I have an enlarged thyroid with nodules. He has referred me back to my PCP for evaluation of that.

I will beging Samters treatment today and am scheduled for polyp removal in a couple of weeks.

I am wondering if anyone else has a thyroid condition in association with Samters?

My experience: Starting at age 48 years: 12 years (to date) of: Allergists, Rheumatologists, ENT specialists, Internal Medicine Specialists---all of whom know little or nothing about Samter's and are habitual prescribers of steroids. Allergy Shots, 2 surgeries, long courses of oral steroids for polyps (58 days one time), long term steroid inhalers and nasal sprays and I still have 3-5 sinus infections per year. Allergy testing 2x's revealed no significant reactions. I refuse to continue use of any form of steroids. I don't use any NSAID's as all cause bronchospasm, facial flushing and sinus congestion. I use acetaminophen sparingly as that also causes mild Samter's symptoms. All forms of alcohol cause Samter's symptoms. I stopped doing sinus irrigations since they leave water behind, which fosters infections. I use a dehumidifier and free-standing air filter machines in my house. I use oral pseudofed (12 hour variety) 2-3 days per week. I use "Sinus Buster" (OTC Homeopathic preparation--capsaicin and eucalyptol)--2-3 x/day--the pepper extract causes moderate, brief pain--but after 5-7 days, you should get used to it--this reduces sinus congestion, improves smell and reduces frequency of sinus infections. I use OTC saline in 3 ounce bottles 2-3 times per day between the Sinus Buster. As a last resort, I use the 12 hour nasal decongestant spray at bedtime. I use albuterol inhaler every 4 hours, as needed for bronchospasm. For immune boosting, regular weight lifting and aerobic exercise (must maintain light to moderate sweat for up to 60 minutes per session) works better that allergy shots for me. I don't believe that Samter's is an allergy--it is a form of toxic metabolic reaction, which may be of mixed origins: genetic and acquired. Also, be aware that use of certain antibiotics can cause toxic effects, which are sometimes irreversable: e.g. fluroquinolones--tendon fragility and sometimes rupture; clindomycin--kidney failure; Rifampin. These antibiotics should be used as a last resort, as briefly as possible and no more than 2 x per year. Read all you can about the antibiotics you take and be vigilant for signs and symptoms of adverse reactions.

Hi,

I seem to have begun having symptoms of this syndrome for the last few years or so. I've always had allergies since childhood along with yearly upper respiratory infections/ chronic post nasal drip. All my symptoms seem to have started after I experienced sinus infections for the first time in my early twenties, along with Vertigo and ear infections. This all seemed to be happening after I had my first child at, which time I also developed. I have noticed that if I treat my acid relfux, the sinus problems subside much more. I even mentioned this to my allergist and he though it might be related as well. Does anyone else have acid reflux as well? I've been told this can aspirate your lungs/esophagus and your sinuses at night while sleeping causing damage. I don't know if I have the polyps yet, but I certainly get wheezy from foods with salicylates as well as breaking out in hives from aspirin and related products. The strange thing is that I was never allergic to aspirin before as I was able to take it as a child. I'm also very sure I suffer from some sort of sleep disorder as I am constantly fatigued no matter how many hours I sleep, seems like I don't get enough deep REM type of sleep?!? It doesn't seem to corelate to my allergies as a lot of times I don't feel stuffy when I sleep at night?!? I am very interested to know of any info on the link between the Samter's Triad symptoms and the melatonin research!!!

I had nasal polyps for several years and I had no idea the few baby aspirin I was taking every day could be causing this. I developed wheezing last year (which I had never had and I was 47,) and I started looking around the internet and discovered that I was probably allergic to the aspirin. I stopped taking it and my symptoms immediately went away. I felt fine with no congestion problems, unless I got a cold. I saw an allergist who agreed with my diagnosis of Samter's. I saw an ENT who said I needed the polyp(s) removed. I had the surgery last month and I felt fantastic immediately after the surgery. The polyp that was removed was 2 inches. The doctor prescribed prednisone that I was to begin right away. I never really understood why I needed to take it, as I felt great. I took it and had terrible side effects, but could breathe. The next time I saw him he told me he wanted me to do Flonase twice a day (this was one week after surgery.) Six days into the Flonase (steroid spray) my sense of smell was going away, I was hoarse, I had headaches and had bloody mucus. I quit it. I have been off of it for two weeks and ever since I quit, I have been having terrible swelling in my nose and wheezing. I am so upset. I was fine before the surgery (except for the polyp.) I don't understand what has happened. Could the steroids have triggered the Samter's to really kick up? I desperately don't want to go back on steroids because I sing and the spray ruined my voice. Right now I am so congested, I sound terrible too. I wish I would have researched steroids before just following doctor's orders. I was better off with a 2" polyp up my nose than I am now. At least I could breathe. Any suggestions for me or ideas why this is happening would be so helpful. Thank you.

MeganFaith -
You may have an infection and not realize it, or possibly weather or other conditions that are causing your increased inflammation currently. Since your surgery was only a month ago, your mucosa is still healing and is vulnerable to infection and irritation. I would suggest nasal rinses with budesonide <Pulmicort> (this is a steroid, but will not give you the side effects of oral steroid use, and because it is added to a saline wash rather than sprayed in the nose, is much less likely to cause the drying/breakage/bleeding and headaches you found with Flonase). I was also unable to tolerate steroid sprays and got headaches, pain and bleeding with them. I tolerate the budesonide without difficulty, however. When you do have irritation and bleeding your sinus is very susceptible to infection. When in that state, muriprocin or bactroban (RX antibiotic ointment) added to a bottle of saline mist can be used several times a day to help heal the mucosa and keep staff and other common bacteria from causing a deeper infection that would require oral steroids. I would suggest aspirin desensitization as soon after surgery as possible to keep from redevelopment of polyps. It really is a great treatment for Samter's. Good Luck!

Hi I too am a samter's patient and have terrible sinus pain and pressure which is pretty much all the time. The only thing I can take is vicodin as for me, too, tylenol alone is a joke. I do the sinus rinses and the nasones spray along with zyflo wich works much better than singulair. However, I think the reason that it continues is due to the salycilate allergy and that chemical occurs naturally in fruits and veggies. Does anyone have any diet suggestions in order to still eat healthy yet avoid so much exposure to salycialtes? I think this is the key for controlling this monster and to finally keep the polyps at bay and the pain to stop. I can not sleep when I lay down as the pain gets worse. I only allow 2 to 3 vicodin a day so i dont get tout of control with it Can anyone help me ? -Stregamama

I was just diagnosed with Samters syndrome - age 65. Is this a hereditary disease because my father died of lung cancer and I think it may have been Samters syndrome only they did not know way back then about this. Can Samters disease relate to cancer?

I was just diagnosed with Samters syndrome - age 65. Is this a hereditary disease because my father died of lung cancer and I think it may have been Samters syndrome only they did not know way back then about this. Can Samters disease relate to cancer?

Harveysgirl.
Try Afrin and a clarinex D one hour before you fly. Then Afrin half hour before descent.
ENT Nurse

My daughter is 16 now and just recently diagnosed with Samter's but I know that she has had this for several years....therefore the answer to your question about your 11 year old is YES. I know that your post is almost 2 years old but I am just reading it now because of my daughters recent battles. I live in Canada and looking for more info on asprin desensitization.
thanks, Britts Mom

Hi Dot1,
Samter's triad is reflux from the gut, asthma, and documented allergies. No relation to lung cancer has been found to date. This is a curable condition if one uses daily medication, follows reflux precautions, and takes allergy shots over several years. The head of the bed should be 30 degrees elevated on a book or brick, no eating or drinking for three hours before lying down for bed, avoid caffiene, alcohol, tobacco, sugar, and eat a bland diet. Sometimes a prilosec or nexium is needed to calm the reflux. Antihistamine and steroid nasal sprays are needed and saline nasal rinse. Blood should be drawn to check for multiple allergens and then those should be avoided. The allergens that are non food items can be put into weekly shot injections at an allergist or ENT. This will desensitize your allergic response. Hope this helps am ENT nurse!

Dear ENT Nurse, I believe you are incorrect. A diagnosis of Samter's includes exhibiting three symptoms - chronic rhinitis and nasal polyposis, asthma, and sensitivity to aspirin. While a Samter's sufferer may have acid reflux, I think most do not. For those that do, I'm not sure whether it is related to the disease or not.

Hello ENT Nurse,
I have not heard it described this way before (reflux from the gut) I know that ant-acids and or baking soda is used as a antidote to calm the reactions to salicylates (asprin and other NSAIDS)and everything that I have read indicates that allergy shots may not be the best treatment. What do you know about asprin desensitization?
Thanks for your input, my daughter is seeing an ENT and and allergist this month, until then...I have her on a low sals diet and all the regular asthma meds.
Britts Mom

Dear BritsMom,
Good luck with the visits. Am not familiar with Aspirin desentization. We treat the allergan with avoidance if we cannot inject it. That would be the best for aspirin or salicyclates. The age of the patient is a factor as well. If there is repeated potent response to small doses of the allergan, then further more aggressive treatments may be needed such as an epinephrine injection, steroids, and potent antihistamines. Be sure to check ingredients and would follow ENT and Allergist instructions carefully to assure this is treated.
ENT nurse