Samter's Triad Syndrome (Page 1)

hi gypsymouse

i have the exact same symptoms as you and they drive me insane, I am interested to know how you get on with your treatment.

please keep in touch and ggod luck xxx

I have been suffering from Samter's triad for 10 years now and have had four surgeries. My condition seems to be comorbid and am wondering if anyone else with Samter's triad suffers from a thyroid disorder or pituitary tumor. I've decided to take some matters into my own hands since most doctors I deal with do not seem to know much about this disorder.

I too have samters triad with a thyroid condition! Surely they are related and we can get more answers to solving this than just managing!!

I was just diagnosed with Samter's today. I also have thyroid issues. Almost 13 years ago, I had a total thyroidectomy due to thyroid cancer(at 21 years old). I am scowering the internet to find out more info, but it seems as though there is some sort of connection between the two.

ihi i had pituitary tumor and surgery in 07 and now i am just being cornfirm with samer's traid what a night mare i had since surgrey, i had mini stoke and get confused and mixed easly.
regards

I have been suffering from the same triad for 20 yrs., I also had 4 surgeries. I'm blown away right now because I have never heard the term, Samter triad. I've been to so many E.n.t Doctors, and not one of them ever said, Samter triad. I also have a thyroid disorder, and never knew the two conditions could be linked. The only thing that seems to help me with my symptoms is a kenalog injection that I get once every three months. It's contains cortisone that helps reduce the inflammation in my sinuses and lungs. I know it's not a cure, but it's nice to get some relief once in awhile. We need to find out more information about this syndrome. I don't know what else to do. Thanks for listening!!

I have been suffering from the same triad for 20 yrs., I also had 4 surgeries. I'm blown away right now because I have never heard the term, Samter triad. I've been to so many E.n.t Doctors, and not one of them ever said, Samter triad. I also have a thyroid disorder, and never knew the two conditions could be linked. The only thing that seems to help me with my symptoms is a kenalog injection that I get once every three months. It's contains cortisone that helps reduce the inflammation in my sinuses and lungs. I know it's not a cure, but it's nice to get some relief once in awhile. We need to find out more information about this syndrome. I don't know what else to do. Thanks for listening!!

Findmyownanswers - do you see and allergist as well as an ENT? It was my allergist who is encouraging the aspirin desensitization and I have heard it can really reduce the need for additional surgeries. My father is also a Sampter's Triad patient and was referred by his ENT for the same treatment. His ENT is also trying a new method for sinus treatment - they use Pulmicort Resipules (nebulizer asthma steroid treatment) in his nasal wash rather than a steroid nasal spray. He claims that this is really helpful. My doctors are not familiar with that use and so have not prescribed it, but they did express interest. I think it likely that Sampter's is comorbid with other auto-immune and inflammatory disorders, but haven't seen any research on the subject.

Sensitivity to all Salicylates is the problem. I am 68. Gained an aspirin allergy at 27. Didn't get the Samters diagnosis until 1989 at the Mayo. I had sinus and nasal polyp surgery a few weeks later.

Afterward I sought out every list of foods I could find that listed those that contained Salicylates. Starting from a diet of all made from scratch things that contained no salicylates I added things back one at a time. I noted what bothered me and what didn't seem to. T first it seemed that I was sensitive to about everything. I noted the worst were mixes and premade items. One of the things that was the worst was F & D yellow number 5. It is used in many products to give or maintain green or yellow colors. Sweet pickles, Kraft mac and cheese, all yellow bakery products (there it was called egg shade because it give the illusion of having egg in the batter), to name a few. Creme of tartare also is a salicylate. It is used in Grey Poupon and in baking. Anything looking artificially green has it!
Your friends are tumeric and annatto they aren't salicylates. I basically made almost all my foods from scratch and avoided those that seemed to bother me. I was able to control it. So much so that I didn't need polyp surgery again until 1999! The surgeon then said, "well I'll see you in 2-3 years". My reply was, "like hell, I'll see you in 10. I had my third polyp surgery in 2011! Stay away from yellow dye number 5!
I am a retired food and beverage professional and I know my allergist over the years learned a lot from my experiences. Oh, the current surgeon who did myt last 2 operations has aqn array of colored suckers that he gives out after they spray your nose. He has both green and yellow ones! I told him about yellow # 5 and he doesn't care. He just does the cutting!

I started out super sensitive and as the years have gone by my sensitivities have lessoned. At first the only alcohol I could consume was vodka with club soda and a squeeze of lime. Now I can and do drink wine on a regular basis even though it does contain tartrates without any problem. I hope this helps. Allergists know allergies. Surgeons know how to operate but it takes and food and beverage pro to figure out how to live.
Even when I am in the hospital I have to watch what they want to feed me even though i have told them of my allergies. Three different times they have placed in front of me foods containing yellow dye number 5. Whgen I spoke with the head dietitian of one hospital she at first tried to tell me that her cooks were all well trained etc. I told her she was full of it. Being an MBA I an held to a higher standard than the rest of the public when I serve on a board and she as a dietitian with her masters is also held accountable. I then mentioned that I had worked as a chef and was certified in the state to teach culinary arts. I was well aware of the background and quality of training her cooks might have had at best. She backed down and apologized. You have to watch out yourself even in a hospital or in a doctor's office!
I hope this helps.

Thank you for your post Wine Guy. I've suffered from the classic symptoms (aspirin, nasel surgery, asthma) for 15 years, but only last month found a name for it when I went to an ENT who know of Samter's Triad. Previous ENTs did not inform me.

I figured out my aspirin allergy the hard way, after having asthma attacks after ingesting an aspirin (once, on a plane........not fun at all)

Doing my research after just three weeks hearing of the disease, I learned of the possibilities of diet helping. I've begun taking Singulair as recommended.

Also note that A diet low in omega-6 oils (precursors of arachidonic acid), and high in omega-3 oils, may help, so have investigated what foods this applies to. And, as you point out, researched foods that are high and low in Salicylates.......I'm a vegan, and alas, discover that many of my favorite foods fall into both of these catagories, like tomatoes and olive oil and almonds.

Have been on a restricted diet for two weeks now, along with doing some cleansing, and am quite amazed at how much better I feel. I plan on continuing this diet for an extensive time to see if things improve.

Also very interested to learn in this forum of the possible relationship between Samter's triad and thyroid disfunction. Looks like even the pros often don't know about this, and we have to do some of our own investigation.

thanks to all of you.

Thank you for your post WineGuyMn
Your knowledge re Samter's appears to be one of the best i have seen. I am very frustrated with the clinical research that appears to be very limited.I have just gotten into this and will be getting a polyp op. very soon.
Would you have an extensive list of foods that we should be eating or not eating? I find that there are only a few on the internet and they are all incomplete.
Thanks

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 and Im sure you are well aware of the general discomfort I am suffering all the time with this disease.

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.

I cant seem to find any help anywhere with this....my doctor has no idea what samters triad is....?????

Those of you with Samter's should join the yahoo group at the link below. It's been very helpful for me to find more information about Samter's, and to know that there are other people out there (lots, in fact) like me!

Hi triad family! I'm 58 female with Newly diagnosed after years of symptoms I've just put up with. Main ones no sense of taste or smell, constant tinnitus both ears , NSAIDs sensitivity and newly congfirmed asthma. Had this for years but just used yoga breathing and visualization to make panic pass. Also major and constant sinusitis and headaches keeping me awake through the night. I'm relieved their is a diagnosis but now scared of the journey ahead as surgery indicated plus t appears a lot of lifestyle changes and discipline with the treatment and management regimen.

i was just diagnosed and was told to use alkalol as a nasel rinse and return in 3 months to the new ent doctor - all my allergist wants to do is procribe medicine and i am so sick and tired of being sick i want to jump off a bridge - cant stop the coughing.......take 2 puffs of asmanex daily and am recently taking high dosages of vit c and a plus steam inhalation - any other suggestions?

My doc blasted me with steroids which always clears me up a bit... And gave me a sprayer to shoot up the budesonide drops. After I cleared up.. I began to irrigate with two drops of baby shampoo in the bottle... I really think I is the baby shampoo that is keepin me functioning.. Please look into that. The research seems to indicate that you need to have a clear phase to start from tho

My doc blasted me with steroids which always clears me up a bit... And gave me a sprayer to shoot up the budesonide drops. After I cleared up.. I began to irrigate with two drops of baby shampoo in the bottle... I really think I is the baby shampoo that is keepin me functioning.. Please look into that. The research seems to indicate that you need to have a clear phase to start from tho

I, too, have been living with Samter's triad for the past 14 years. Just a few weeks ago, I underwent my 3rd surgery to have polyps removed, as multiple doses of antibiotics and prednisone were not working.

I see both an ENT as well as an Asthma/Allergy specialist. They work well together and both suggested trying some new (for me) medications. University of Pennsylvania medical school has apparently been studying the effects of a nasal wash with Pulmicort resples (as someone wrote above), and both of my physicians highly recommended trying it. I have to do it twice a day, but it is worth it...very soothing. My allergist also suggested Xyflo CR, which is an old medication back on the market. It is supposed to be effective in stopping the polyp growth farther down towards the base of where they grow. The down side is that it can be hard on the liver, so regular bloodtests are necessary.

3 weeks out from surgery, and I am breathing with my mouth closed and have little sinus pressure/pain. No sense of smell yet, but my doctor said that's normal since there's still a lot of swelling. Hope all of this helps!

Yes, I too suffer with nasal polyps, asthma and Samter's Triad. Recently went to a walk-in clinic (after coughing so much and spit was a different color), I was told I was a split hair from walking pneumonia, nurse diagnosed me as bronchitis (3 branches of right lung congested). After 2nd nasal polyp surgery I vowed not to do allopathic medicine and try many alternatives. Personally, I always have in my allergy arsenal many herbs and supplements. You can write me if you would like to discuss further. JT

I also have Samter's triad and was on antibotics almost non-stop until my husband started doing chest therapy on me. This gets rid of the flem in your lungs so they can't infect.
You have someone clap your back and under your arms with a cupped hand, while you breath deeply. Repeat in 15 minutes. Do this morning and night and in the middle of the day if you can and/or need it.
I hope this helps.

I was diagnosed with Sampter's at about age 50, but have had environmental allergies my whole life. I had sinus surgery for the first time about 6 years ago but was not diligent about nasal steroids and daily flushing and the sinusitis and polyps returned rather quickly.

Three years ago, I went to National Jewish for their aspirin desensitization treatment. The doctor I had would not even admit to Sampter's Triad as a condition. I would not recommend this treatment unless your ENT and Allergist are adament. After the treatment, which lasted 3 awful days, I was to take 4 aspirin a day for a year and then start reducing. The bruising on my body, especially my legs which were literally black, was too severe to continue that dosage. I tried one aspirin a day but that was also too much. In about the third month after treatment I went to one reduced strength aspirin a day. That seemed to work, and I was really pleased not to have migraines during this period, but the polyps experienced a growth explosion.

In October of last year I had the sinus surgery again and this time I am using Nasonex twice a day and also flushing with a salt solution twice a day and can still taste and smell.

Of course, I do still have the post nasal drip and couphing that accompany the condition as I am told by my ENT that it can not be cured, only contained. The migraines are back too.

Meds:
Nasonex (twice daily)
Singulair (once daily)
Advair (twice daily)
Clarinex (as needed for allegies)

I have not officially been diagnosed just told by my ENT that occasionally people with nasal polyps and sinusitis develop this condition where they cannot take NSAIDS. ENT informed me that a doctor in Germany was working on a desensitization method involving aspirin. However he did not know the method but thought it started out with the patient only licking a baby aspirin and working up to taking 1/4" of one baby aspirin, but it could take a long time and one should be in the care of a doctor if they were going to try due to the problems that could arise i.e. anaphalysis, asthma seizures, etc.
Since the bronchitis I am taking proventil and sometimes use the advair (but I really don't like to do) I'm more of a naturalist. Some days it's just difficult to get anything done (single mom of two). When I was 2yr had an asthma attack but Mom said it went away, lived my life asthma free till 2006 when I suddenly developed asthma.

Hi everyone. I am a 50 yr old male living in New Zealand and I have Samters. My condition is well controlled and I would like to help others in this forum because there are some scary stories out there.

I am not a doctor and so what I have to say is just based on my experience and my reading. I am lucky enough to have a really good specialist and also a brother who is a doctor who has taken special interest in Samters. I have read just about everything written on the subject and had to learn a whole new language to understand all the immunological jargon. Most doctors have never heard of Samters so I think it makes sense for us to learn as much as we can about our own condition.

Thinker2thinker: That desensitization method you describe sounds like a bad joke. I underwent desensitization and it was a complete success but very scary - its hard to take a drug you're avoided for 30 years. It was nothing like your doctor described. It involved oral challenge to ASA (aspirin) while admitted to hospital for 2-3 days (depending on your reaction to the drug). It is very important that NSAID challenges should only be undertaken by specialists with the expertise to manage any resultant symptoms.

Krisp: your story sounds just as scary. What dose of aspirin were you on? When you say 4 a day how much was each tab? The standard protocol calls for a maintenance dose of 300mg per day - that is 1 normal aspirin pill.

Anyway, if anyone has any questions I will try and answer as well as I can. I don't claim to know everything but my condition is well controlled these days and consequently my quality of life has improved immensely. I can now taste food (I even enjoy wine now and it used to "taste" like vinegar), I sleep well, I haven't wheezed in years and, best of all, I can smell my children's hair. No-one can imagine what that is like if you've never smelled anything before.

Hi, I wondering if you may have some information that may be useful to me. I hae had nasal polys since age 12, I am now 31. I have had a total of 7 surgeries. I was desensitized to aspirin 12/2009, and had been polyp free up until about 2 weeks ago. I am on a 2x daily budesonide rinse, flucanazole, and tobramiacine drops. This all seemed to be working fine until just recently. Is there something you are doing that I am missing out on. Any information you would have would be greatly appreciated.

hello could give me more in fo on this

hello could give me more in fo on this

Hello...I am 41 and have been struggling with nasal polyps for 16 years. Have already had 3 sinus surgeries but none of my doctors were able to tell me what I have other than severe rhinitis. I finally went to another city doctor last week and they told me it is Samter's Triad. I have been researching ever since and everything I have read sounds exactly like me. I read your post and you mentioned that your quality of life has improved immensely. How did you come to this stage in your life? I need some relief and really don't wanna go through another surgery.

Hello Lauren, I have been suffering with samters for the past five years. I have been seen by numerous Doctors most of which I had to inform them what samters was. I have been through aspirin desensitization, after my first sinus surgery and it helped for two years at which time I had another. that surgery lasted about 6 months. I did get desensitized agian and took a daily dose of 650mg. In October of 2011, I had an asthma attack (which i hadnt had for many years), and while at the er they treated me for GERD. It seems that i developed the Gerd from the aspirin use over the years. So now im off the aspirin and on nexeum. My polyps are back with a vegence, Im looking at my third sinus surgery soon, and im tired of putting this poison into my body. I'm going to be 50 in July, and Im full of life. I need to get control back but dont know where to turn. I take zyflo, advair, pulacort nasal rinse and nexeum daily.. Is there any natural help out there? Thanks

Hi Lauren
i have lived with this for 10yrs and finally after taking my 10 month old son to a specialist this week he was asking about family history so i told him my symptoms and he told me i have Samters Triad so i have started googling i live in Auckland so would be keen to hear your story and what can be done about it as not one doctor in ten yrs had a clue what i have. So if you live in this part of NZ please suggest who/where to start even as a father i would still love to smell my new sons hair.

Hi Lauren
i have lived with this for 10yrs and finally after taking my 10 month old son to a specialist this week he was asking about family history so i told him my symptoms and he told me i have Samters Triad so i have started googling i live in Auckland so would be keen to hear your story and what can be done about it as not one doctor in ten yrs had a clue what i have. So if you live in this part of NZ please suggest who/where to start even as a father i would still love to smell my new sons hair.

Hi
Had the curse for several years and mainly bothered by nose cogestion. I was put on steroids (prednis.) for about one and half years as it seemed to my docs to be the only answer. I pressed to see a ent specialist who discovered poloyps.
About a month ago I had them removed. Within three weeks they retuned with such agression one nostril was, and still is, completely blocked. My ENT man told me I had to stop the prednisolone and there was no point removing the polyps until the cause is found. I am still on steroid nasules and douches but I have greaat difficulty clearing even the "open" nostril. I was put on antibiotics which may have decreased the yellowless of the mucous.
Been refered for asprin challange
I just wondered what you think?
Thanks
Mike in Sheffield UK.

Hey Krisp, I did some research on that dosage of aspirin you were given and found out that in America they sometimes give a higher dose than we do over here.

Hi Laurenceb

What are you doing that is making you so well.I have had sampters for 20 years, 2 operations and all of the above for symptoms. I am currently on asprin 750mg a day which i have been on for 1 month it doesnt seem to be doing any good in fact my systoms are worse.
I am sticking to it, maybe you get worse before you get better.

I would love to know if anyone has any other ideas on flying. I am flying out on 8th May and before I go I have to take a course of cortisone and sudafed chew chewing gum and have ear plugs. Help

Harveysgirl

I have been using the pulmicort respules in my nasal rinse for a little over a month and I really think it is helping. I wasn't able to use the steroid nasal sprays as they gave me severe headaches, but I don't have the same reactions to the steroid used in the rinse. I have had to take two more courses of antibiotics since the initial post, but now that the rinses are better established I don't have the daily face pain that I was experiencing before and I can still smell and taste. I see the doctor next week re: more surgery since I've had so much infection in the last 6 months. If the surgery is necessary I have to do it before the aspirin desensitization (can't take aspirin for a few weeks post surgery since it is an anti-coagulant, which would mean I'd have to desensitize more than once). I've joined the Yahoo group listed in a post above and it has a lot of active members and some really good information and moral support. I recommend it. Some of the people there use some natural remedies (many oregano based) to treat fungal sinus issues and for their antibiotic properties. Several take Singulair (leukotriene inhibitor) and other medications. You can ask questions about specific treatments.

If I get another CT following using the Pulmicort in the rinse I'll let you know if it shows improvement. That will give some empirical support to the off label use of this medication.

Can an 11 year old be diagnosed with this condition? It appears that
most of the others on this blog are adults

Hello:

I am responding to the 11 year old. I had my first reaction in the ninth grade which almost killed me. I was reading about the 20-30 age bracket but I had all the characteristic beginnings then. By the time I graduated I was having an asthma attack every other month and in/out of ER. I have had 5 sinus surgeries before they found out it was all due to fungal sinusitis and polyps; now surgery isn't recommended.

Instead, sinus rinse with itraconazale prepared by JCB Laboratories keeps things better for me. I do 20 cc's twice a day in each nostril. I went to the Mayo Clinic for this initial treatment.

I am now seeking alternative treatments as I am on zyrtec D, Zytrec, flonase, itraconazale irrigation, proventil as needed, and advair 500 mg.

I am eager to feed my body new things to hopefully make my quality of life stay good into the future.

I too can not smell and on occasion it comes back for no rhyme or reason. It feels so good to know I am not crazy and others have this too....no one seems to understand what I go through!!!

I've had the Aspirin desensitization and it has helped, thought I not sure how much. Right now I am on 640mg 2x a day....I do notice if I have forgotten a dose on accident it helps a bunch, but the ENT and allergist did not recommended that.

Considering before more surgery I couldn't breath through my nose, things aren't to bad with the exception of my sinuses while I sleep. To be honest the medicine that has helped me the most is Zyflo, its an anti-lukotriene like singular - just more heavy duty,

Polarbear38 - I think it typically happens between 20-30. But I don't know if that means it can't happen at a younger age. An allergist should be able to tell you. It took them about 5 years to figure out I have Samter's since everything doesn't show up at once.

First I had asthma, then sinus issues, and then polyps. Which is not the standard order but it all took years to come to fruition.

Polarbear38 - I haven't heard of it being that early onset before, but if the 11 year old has asthma, polyps and ASA sensitivity, then you should talk to the allergist about it. My asthma started young, then sinus issues in late 20's, finally ASA sensitivity in my early 30's.

I had my second surgery last week with the "stealth" procedure. It went really well, I'm healing quickly and feeling good already. I could breathe and smell right away. I have the aspirin desensitization next week.

Jennie