Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hi, Beverley. I am 36 and a lot of what you wrote is familiar to me. When I was a teenager, my family doctor told my parents that my sinuses were 90 percent blocked and I probably had no idea what it was like to feel well. He was right. I didn't get an asthma diagnosis until my 20s, and it made a world of difference. In 2006 I had surgery for polyps throughout my ethnoid and maxcillary sinuses. I am a singer, and this surgery completely altered my voice. Ultimately this was a positive thing. However, I was also in the midst of testing for some type of arthritis. It turned out to be something called spondyloarthritis, which in my case presents like rheumatoid arthritis with no rheumatoid factor. I had a severe reaction to Daypro, so as a last resort was put on Sulfasalazine. I questioned this, but the rheumatologist thought perhaps I might tolerate it. The short version of the story is that last week I had another CT scan, and I now have more polyps in my ethnoids and sphnoid sinuses. No one in my area will do aspirin desensitization, and at this point I don't know that it would be the best option for me. I'm not sure what options that leaves me for arthritis treatment. I am on Plaquenil, which of course doesn't help my sinus situation since my immune threshold is lowered, and low dose Prednisone. So you are not alone in dealing with the arthritis/aspirin triad issues. [hugs] J. Blakesjblake@...http://www.growingstrong.orgYou will seek me and find me when you seek me with all your heart. (Jer. 29:13)>>> "anaturallearner" <contact@...> 4/24/2008 3:03 AM >>>Hello. I'm Beverley. I'm feeling a little lost in my life at the moment, hence the need toseek out others who have experiences similar to myself so I can chatand maybe feel more confident about making decisions. I'm 49, have had problems with my sinuses since infancy. First sinusrelated migraine that I can remember was at age 6. Diagnosed at aboutage 10 but didn't take my nasal spray. Migraines with vomitingcontinued throughout childhood into teen years, when an ENT decided todo a Luc Caldwell operation when I was 19 to remove polyps. By then Ihad developed asthma, first diagnosed and treated as anxiety for abouta year. Lost my sense of smell sometime around my early twenties. I get itback when taking large doses of prednisolone for a couple of weeks andthen it goes again. Had a bout of exercise-induced hives at the age of 16 for six monthsor so. Daughter has asthma since childhood, son has cholinergicurticaria since mid teens (six years now, continuous), other son getssinus migraines (won't go near a doctor)... :-( Three more sinus ops later, I'm scheduled to have my frontal andethnoid sinuses scraped by endoscopic surgery. Apparently the ENT isgoing to cut away a sizable chunk of bone to enhance drainage. At the same time he's going to check out a mucoucele (cyst) in mymaxillary sinus (which he says doesn't exist anymore due to theextensive nature of the disease). A few years ago I was diagnosed with osteoarthritis. Two years ago Iwas diagnosed with chronic lymphocytic leukemia, currently at stage 0,no symptoms other than elevated white blood cell count. The CLL is thereason I'm going ahead with the sinus surgery as drainagecomplications may cause infections with deadly effect once theleukemia starts to become active. Thanks for staying with me so far with this potted history! What have I done to help my situation? I discovered I was allergic to aspirin at age 19 - scary evening! Beendesensitised twice, but had to stop taking aspirin for surgery, thesecond time sinus polyp removal. Last attempt failed. Hospital isreluctant to do it again, although I'm keen once this operation is outof the way. I am particularly interested in something calledNOaspirin, but need to do more research. I did the whole low salicylate diet one year but because ofsensitivity to air borne particles never managed to get symptom freeenough to challenge anything at all. Dietitian advised me to stopfollowing the diet because I could inadvertently lower the threshold Iwas sensitive to.Depression was a major factor in my decision to stop being careful andeat anything I want to - amazingly my symptoms didn't worsen. The depression seems totally unrelated sometimes to my mental state,and I can cycle from being happy to almost suicidal within a hour,especially if I've been very happy or excited. As a kid, excitementwould bring on a migraine... Singulair seems to be helping. I take asthma preventer and nasalcorticosteriod daily (for about 30 years!). In a nut shell I am feeling healthier than ever, though I'm grosslyoverweight and dreadfully unfit. I think I just need to read and chat with others, try to make sense ofwhat has been going on with my body. For years I felt like ahypochondriac because no one else was like me, but now there's so manyof us. Looking for hope, cheersBeverley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Beverly, YOU ARE NOT ALONE! It seems I am exhausted all the time -- even falling asleep at work for time to time in one day. My daughter says it is from being so inactive. Maybe activity would give me more energy -- but where do you find the energy to begin? I have missed so much work due to my sinus infections, spastic colon, and now arthritis -- but I'm 54 so maybe that's why! (just kidding -- gotta laugh at this or cry??) I am scheduled for my 3rd sinus surgery ( just had the 2nd one in Jan) but my surgeon transferred me to a teaching university -- guess I'll be one heck of a guinea pig. I really have no solutions for you, I'm sorry - but the information this group provides is amazingly supportive. Best Luck to you -- you are in my thoughts. Reg From: Blake <sjblake@...>Subject: Re: introduction - long postsamters Date: Thursday, April 24, 2008, 3:48 AM Hi, Beverley. I am 36 and a lot of what you wrote is familiar to me. When I was a teenager, my family doctor told my parents that my sinuses were 90 percent blocked and I probably had no idea what it was like to feel well. He was right. I didn't get an asthma diagnosis until my 20s, and it made a world of difference. In 2006 I had surgery for polyps throughout my ethnoid and maxcillary sinuses. I am a singer, and this surgery completely altered my voice. Ultimately this was a positive thing. However, I was also in the midst of testing for some type of arthritis. It turned out to be something called spondyloarthritis, which in my case presents like rheumatoid arthritis with no rheumatoid factor. I had a severe reaction to Daypro, so as a last resort was put on Sulfasalazine. I questioned this, but the rheumatologist thought perhaps I might tolerate it. The short version of the story is that last week I had another CT scan, and I now have more polyps in my ethnoids and sphnoid sinuses. No one in my area will do aspirin desensitization, and at this point I don't know that it would be the best option for me. I'm not sure what options that leaves me for arthritis treatment. I am on Plaquenil, which of course doesn't help my sinus situation since my immune threshold is lowered, and low dose Prednisone. So you are not alone in dealing with the arthritis/aspirin triad issues. [hugs] J. Blakesjblake@...http://www.growingstrong.orgYou will seek me and find me when you seek me with all your heart. (Jer. 29:13)>>> "anaturallearner" <contact@...> 4/24/2008 3:03 AM >>> Hello. I'm Beverley. I'm feeling a little lost in my life at the moment, hence the need toseek out others who have experiences similar to myself so I can chatand maybe feel more confident about making decisions. I'm 49, have had problems with my sinuses since infancy. First sinusrelated migraine that I can remember was at age 6. Diagnosed at aboutage 10 but didn't take my nasal spray. Migraines with vomitingcontinued throughout childhood into teen years, when an ENT decided todo a Luc Caldwell operation when I was 19 to remove polyps. By then Ihad developed asthma, first diagnosed and treated as anxiety for abouta year. Lost my sense of smell sometime around my early twenties. I get itback when taking large doses of prednisolone for a couple of weeks andthen it goes again. Had a bout of exercise-induced hives at the age of 16 for six monthsor so. Daughter has asthma since childhood, son has cholinergicurticaria since mid teens (six years now, continuous), other son getssinus migraines (won't go near a doctor)... :-( Three more sinus ops later, I'm scheduled to have my frontal andethnoid sinuses scraped by endoscopic surgery. Apparently the ENT isgoing to cut away a sizable chunk of bone to enhance drainage. At the same time he's going to check out a mucoucele (cyst) in mymaxillary sinus (which he says doesn't exist anymore due to theextensive nature of the disease). A few years ago I was diagnosed with osteoarthritis. Two years ago Iwas diagnosed with chronic lymphocytic leukemia, currently at stage 0,no symptoms other than elevated white blood cell count. The CLL is thereason I'm going ahead with the sinus surgery as drainagecomplications may cause infections with deadly effect once theleukemia starts to become active. Thanks for staying with me so far with this potted history! What have I done to help my situation? I discovered I was allergic to aspirin at age 19 - scary evening! Beendesensitised twice, but had to stop taking aspirin for surgery, thesecond time sinus polyp removal. Last attempt failed. Hospital isreluctant to do it again, although I'm keen once this operation is outof the way. I am particularly interested in something calledNOaspirin, but need to do more research. I did the whole low salicylate diet one year but because ofsensitivity to air borne particles never managed to get symptom freeenough to challenge anything at all. Dietitian advised me to stopfollowing the diet because I could inadvertently lower the threshold Iwas sensitive to.Depression was a major factor in my decision to stop being careful andeat anything I want to - amazingly my symptoms didn't worsen. The depression seems totally unrelated sometimes to my mental state,and I can cycle from being happy to almost suicidal within a hour,especially if I've been very happy or excited. As a kid, excitementwould bring on a migraine... Singulair seems to be helping. I take asthma preventer and nasalcorticosteriod daily (for about 30 years!). In a nut shell I am feeling healthier than ever, though I'm grosslyoverweight and dreadfully unfit. I think I just need to read and chat with others, try to make sense ofwhat has been going on with my body. For years I felt like ahypochondriac because no one else was like me, but now there's so manyof us. Looking for hope, cheersBeverley Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Thanks for the feedback . I am very interested to know if others feel that the inflammation caused by salicylate sensitivity/allergy is more widespread than sinus/lungs and is causing diseases that also involve inflammation. When I first started finding out as much as I could about what was wrong with me the doctors were clueless. It's like I've been one step ahead of them all my life. It's not their fault - there weren't too many like me around. Now it's like there is an epidemic and they all know about the dangers of aspirin and high salicylate diets, etc. I grew tired of doctors looking at me as though I was making it all up. I have a great relationship with my immunologist but there isn't anything he can offer, except drugs to manage the disease. I want to know the cause, and I want a cure. :-) Arthritis of any kind is not nice. I hate pain of any kind and it was a shock to me to feel how intense it was. I'm loathe to take painkillers, even paracetamol, as I sometimes get an asthma reaction to even that. I will take it, but have to be in the right 'mood' - that is, when my overall stress levels are low. big hugs to you too :-) wishing you good health, peace and prosperity, Beverley Paine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hi, Beverley. Though I didn't get my diagnosis until last summer, I have been dealing with joint pain since my teens. It was a huge relief to find out what it was, that I wasn't making it up. I have been feeling for months that everything is somehow related, but my docs think that is very silly and keep assuring me that is not the case. I have cut a lot of high salicylates out of my diet, and I wonder if I would have felt much better this year if I had not been on Sulfasalazine! My mom asked what I was going to eat... My diet is really very boring. I am taking Plaquenil for the autoimmune arthritis condition. It probably helped to mediate the reaction to the Sulfasalazine. I felt better after starting it. We'll see how I do with Plaquenil only. I take Vicodin for pain control, and I don't react to it except to stay awake all night if I take it in the evenings. Perhaps I won't need it so much if this aspirin/inflammation theory holds any weight... I'll be glad to keep you posted. J. Blakesjblake@...http://www.growingstrong.orgYou will seek me and find me when you seek me with all your heart. (Jer. 29:13)>>> "Beverley Paine" <contact@...> 4/24/2008 5:53 PM >>>Thanks for the feedback . I am very interested to know if others feel that the inflammation caused by salicylate sensitivity/allergy is more widespread than sinus/lungs and is causing diseases that also involve inflammation. When I first started finding out as much as I could about what was wrong with me the doctors were clueless. It's like I've been one step ahead of them all my life. It's not their fault - there weren't too many like me around. Now it's like there is an epidemic and they all know about the dangers of aspirin and high salicylate diets, etc. I grew tired of doctors looking at me as though I was making it all up. I have a great relationship with my immunologist but there isn't anything he can offer, except drugs to manage the disease. I want to know the cause, and I want a cure. :-) Arthritis of any kind is not nice. I hate pain of any kind and it was a shock to me to feel how intense it was. I'm loathe to take painkillers, even paracetamol, as I sometimes get an asthma reaction to even that. I will take it, but have to be in the right 'mood' - that is, when my overall stress levels are low. big hugs to you too :-) wishing you good health, peace and prosperity, Beverley Paine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hi Reg, The tiredness used to get to me too. My mother used to tell me all the time when I was a child I was 'born lazy', so I grew up thinking I was lazy. Duh! What I have discovered is that on my good days I work like a horse and amaze everyone. That didn't help though, because then they knew I was being lazy on my not so good days! For the last decade I have been really nice to myself and when I can't lift anything, or shift myself, I don't. I'm a writer, so it's easy to be busy sitting down all day. But this pervasive and mostly unpredictable tiredness has meant that working for a living has been out of reach. Writing doesn't pay, not the way I do it anyway. I tend to work in short bursts when I can - always have. Five minutes on, ten minutes off recovering. I'm glad I don't wheeze any more (thanks to meds). Some foods, like grains, reduce my strength dramatically. I try not to eat them before breakfast because it can ruin my day. Tends to muck up my mood as well. It's hard tracking down causes so most of the time I simply go with the flow, but it can be really frustrating. Good luck to you too. :-) Are you okay with being a guinea pig? cheers Beverley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Hi to All, I have just found this board and am still finding my way around it so please excuse my inexperience in posting. My husband has been diagnosed with Samter's Triad however due to ongoing problems our specialist is monitoring him for other possibilities e,g Churg Strauss. He started Aspirin Desensitization last September in London (we live in Ireland). He is actually taking lysine aspirin intranasally 9 drops each nostril. He reacted to 12mg aspirin during his initial aspirin challenge. After 3 months we returned and commenced oral as well as nasal administration. However within days of returning home he had a major reaction and as a result has to stop the oral but is continuing on the nasal application. He like many of you has no smell, taste and suffers for ear congestion. The only thing that appears to offer relief is that he has had grommets inserted as he was prone to perforations and is resistant to many antibiotics. At present he is on long term distaclor but at the minute his ears are clogged and his hearing is affected. He has had several surgeries for polyps. The last two being in America where he underwent computer guided FESS. This is not available in Ireland. During surgery in New York it was discovered that during his previous surgery in Ireland his turbinates were straightened which resulted in the blockage of the sinus drainage passages in his nose. The result was mucus and infection had no escape and also aggressive polyps had eroded his cribriform plate as well as the bone between his nose and eyes. Since we started aspirin desensitisation last september he has had the following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken his arm requiring 3 pins (due to osteoporosis from steroids) (4) adverse reaction to the desensitization (5) impetigo (6) shingle (7) folliculitis and this does not include minor facial swelling and breathing problems that occur from time to time. So, I definitely think that membership of this group will be of assistance to me and hopefully I will learn something from reading your posts. One final thing allergy testing has shown no allergies except aspirin sensitivity. Breda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Breda, I welcome you, but I am also sorry that I have to do so. I hope that you will find this group helpful. I have lived with Samters for over 20 years, have had 13 polyp surgeries and have been desensitized with aspirin as well. I still suffer unfortunately with ongoing sinus infections, etc. and have lost quite a bit of my hearing in both ears. This is not a fun disease. I found this group about a year ago and feel it was heaven sent. I have never met another person face to face with this condition, so having the opportunity to converse with so many who completely understand, can relate, and can offer suggestions is wonderful. I hope you too will find this group helpful to you. God bless you for sticking by your husband. I know it has been challenging at times for my spouse. Welcome. Jane From: zippyelle <zippyelle@...>Subject: Introduction - long postsamters Date: Saturday, June 14, 2008, 5:36 PM Hi to All,I have just found this board and am still finding my way around it soplease excuse my inexperience in posting.My husband has been diagnosed with Samter's Triad however due toongoing problems our specialist is monitoring him for otherpossibilities e,g Churg Strauss.He started Aspirin Desensitization last September in London (we livein Ireland). He is actually taking lysine aspirin intranasally 9 dropseach nostril. He reacted to 12mg aspirin during his initial aspirinchallenge. After 3 months we returned and commenced oral as well asnasal administration. However within days of returning home he had amajor reaction and as a result has to stop the oral but is continuingon the nasal application.He like many of you has no smell, taste and suffers for earcongestion. The only thing that appears to offer relief is that he hashad grommets inserted as he was prone to perforations and is resistantto many antibiotics.At present he is on long term distaclor but at the minute his ears areclogged and his hearing is affected.He has had several surgeries for polyps. The last two being in Americawhere he underwent computer guided FESS. This is not available inIreland. During surgery in New York it was discovered that during hisprevious surgery in Ireland his turbinates were straightened whichresulted in the blockage of the sinus drainage passages in his nose.The result was mucus and infection had no escape and also aggressivepolyps had eroded his cribriform plate as well as the bone between hisnose and eyes. Since we started aspirin desensitisation last september he has had thefollowing:- (1) Grommets inserted (2) pnuemonia (3)fallen and brokenhis arm requiring 3 pins (due to osteoporosis from steroids) (4)adverse reaction to the desensitization (5) impetigo (6) shingle (7)folliculitis and this does not include minor facial swelling andbreathing problems that occur from time to time.So, I definitely think that membership of this group will be ofassistance to me and hopefully I will learn something from readingyour posts. One final thing allergy testing has shown no allergiesexcept aspirin sensitivity.Breda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Breda (do I detect a dutch background) Welcome to this group. I joined only a few months ago having been just diagnosed as ASA Triad and have found it invaluable not least as you have the certain knowledge that you are not alone after all. I am the sufferer but I am sure you, as a carer, will gain much too. You and your husband have been through a lot and I am sure it has made you stronger as a couple evidenced by your post and the obvious genuine concern you have for your partner. The Samters name is not used so much in the UK as ASA Triad so the group takes a little finding for us on the other side of the pond. The condition is however the same worldwide. I have found that Desens treatment is not so common in the UK and I am still awaiting help with that. I have a referral to Addenbrookes but yet to see the specialist there. There was a feature on the BBC One Show late last week about desens treatment at Addenbrookes, aimed mainly at hayfever and asthma sufferers. I think you could still see it on the "iplayer" option for the next few days. Just tried it at http://www.bbc.co.uk/theoneshow/index.shtml but the video is about water cress instead - have just emailed BCC to ask them to fix it! I think desens got a bad reputation in the 80's here in UK as it was administered without enough supervision and resulted in some deaths. Suspect the drug companies were not over supportive either as it could affect their sales. Anyway it seems as if the tide may be turning at last. Who was your London desens specialist? Take care and very best wishes to you both. Mike samters From: zippyelle@...Date: Sat, 14 Jun 2008 23:36:21 +0000Subject: Introduction - long post Hi to All,I have just found this board and am still finding my way around it soplease excuse my inexperience in posting.My husband has been diagnosed with Samter's Triad however due toongoing problems our specialist is monitoring him for otherpossibilities e,g Churg Strauss.He started Aspirin Desensitization last September in London (we livein Ireland). He is actually taking lysine aspirin intranasally 9 dropseach nostril. He reacted to 12mg aspirin during his initial aspirinchallenge. After 3 months we returned and commenced oral as well asnasal administration. However within days of returning home he had amajor reaction and as a result has to stop the oral but is continuingon the nasal application.He like many of you has no smell, taste and suffers for earcongestion. The only thing that appears to offer relief is that he hashad grommets inserted as he was prone to perforations and is resistantto many antibiotics.At present he is on long term distaclor but at the minute his ears areclogged and his hearing is affected.He has had several surgeries for polyps. The last two being in Americawhere he underwent computer guided FESS. This is not available inIreland. During surgery in New York it was discovered that during hisprevious surgery in Ireland his turbinates were straightened whichresulted in the blockage of the sinus drainage passages in his nose.The result was mucus and infection had no escape and also aggressivepolyps had eroded his cribriform plate as well as the bone between hisnose and eyes. Since we started aspirin desensitisation last september he has had thefollowing:- (1) Grommets inserted (2) pnuemonia (3)fallen and brokenhis arm requiring 3 pins (due to osteoporosis from steroids) (4)adverse reaction to the desensitization (5) impetigo (6) shingle (7)folliculitis and this does not include minor facial swelling andbreathing problems that occur from time to time.So, I definitely think that membership of this group will be ofassistance to me and hopefully I will learn something from readingyour posts. One final thing allergy testing has shown no allergiesexcept aspirin sensitivity.Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Breda, Welcome to the group. I live in Somerset, UK and like your husband do not have any allergies except to aspirin. I was desens at Addenbrooke's hospital last year and am on 600mg aspirin a day. I have osteopenia due to taking steroids for the last 8 years and am 37 years old. I hope you find this group helpful and I hope your husbands health improves - it sounds like his immunity must be struggling if he is getting shingles and pneumonia and so on. Regards, BeckyMike Hammond <rovenmike@...> wrote: Breda (do I detect a dutch background) Welcome to this group. I joined only a few months ago having been just diagnosed as ASA Triad and have found it invaluable not least as you have the certain knowledge that you are not alone after all. I am the sufferer but I am sure you, as a carer, will gain much too. You and your husband have been through a lot and I am sure it has made you stronger as a couple evidenced by your post and the obvious genuine concern you have for your partner. The Samters name is not used so much in the UK as ASA Triad so the group takes a little finding for us on the other side of the pond. The condition is however the same worldwide. I have found that Desens treatment is not so common in the UK and I am still awaiting help with that. I have a referral to Addenbrookes but yet to see the specialist there. There was a feature on the BBC One Show late last week about desens treatment at Addenbrookes, aimed mainly at hayfever and asthma sufferers. I think you could still see it on the "iplayer" option for the next few days. Just tried it at http://www.bbc.co.uk/theoneshow/index.shtml but the video is about water cress instead - have just emailed BCC to ask them to fix it! I think desens got a bad reputation in the 80's here in UK as it was administered without enough supervision and resulted in some deaths. Suspect the drug companies were not over supportive either as it could affect their sales. Anyway it seems as if the tide may be turning at last. Who was your London desens specialist? Take care and very best wishes to you both. Mike To: samters From: zippyelle Date: Sat, 14 Jun 2008 23:36:21 +0000Subject: Introduction - long post Hi to All,I have just found this board and am still finding my way around it soplease excuse my inexperience in posting.My husband has been diagnosed with Samter's Triad however due toongoing problems our specialist is monitoring him for otherpossibilities e,g Churg Strauss.He started Aspirin Desensitization last September in London (we livein Ireland). He is actually taking lysine aspirin intranasally 9 dropseach nostril. He reacted to 12mg aspirin during his initial aspirinchallenge. After 3 months we returned and commenced oral as well asnasal administration. However within days of returning home he had amajor reaction and as a result has to stop the oral but is continuingon the nasal application.He like many of you has no smell, taste and suffers for earcongestion. The only thing that appears to offer relief is that he hashad grommets inserted as he was prone to perforations and is resistantto many antibiotics.At present he is on long term distaclor but at the minute his ears areclogged and his hearing is affected.He has had several surgeries for polyps. The last two being in Americawhere he underwent computer guided FESS. This is not available inIreland. During surgery in New York it was discovered that during hisprevious surgery in Ireland his turbinates were straightened whichresulted in the blockage of the sinus drainage passages in his nose.The result was mucus and infection had no escape and also aggressivepolyps had eroded his cribriform plate as well as the bone between hisnose and eyes. Since we started aspirin desensitisation last september he has had thefollowing:- (1) Grommets inserted (2) pnuemonia (3)fallen and brokenhis arm requiring 3 pins (due to osteoporosis from steroids) (4)adverse reaction to the desensitization (5) impetigo (6) shingle (7)folliculitis and this does not include minor facial swelling andbreathing problems that occur from time to time.So, I definitely think that membership of this group will be ofassistance to me and hopefully I will learn something from readingyour posts. One final thing allergy testing has shown no allergiesexcept aspirin sensitivity.Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Sent from . A Smarter Email. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Mike, Jane and ,Thanks for replying to my post. Unfortunately there is no Dutch background Mike - Breda is a derivtive of Bridget a typical Irish name. As I said in my previous post Tom had three surgeries in the United States 2 in 2005 and follow up in 2006. Last year our Specialist here in Ireland decided that more surgery was required and wanted us to return to New York. However, we did not want to go back to New York - its too far, expensive and takes up a lot of time and when you have a family this is hard. So I went on the internet to see if I could find someplace closer to home and found Prof. Lund at the Royal National Throat Nose and Ear Hospital, Grays Inn Road, London. We got an appointment with both Prof. Lund and Dr, Glenis Scadding (Rhinologist, Allergist and Immunologist). During our consultation they decided to go the desensitization route rather than more invasive surgery. We couldn't be happier. We have more involvement with Dr Scadding and she is a truly lovely person. We travel every three months and as we live in southwest Ireland we have at times had consultations by phone.The other thing I know is that the desensitisation programme we are on involves lysine aspirin. Dr. Scadding has told us that this form of treatment is only available with them and in France. It is administerd in liquid form through 9 drops in each nostril so the aspirin directly hits the polyps. As Toms polyps are high up in the nose he has to get into some amusing positions to ensure that it hits the spot. However, when he attempted to progress and take some orally as well he had a very bad reaction, so right now we don't know where we stand. Tom has spent years going from one Specialist to another. Eventually due to his declining health I became more involved.This is because he has a terrible memory and tends to forget incidents, which I do not. I am a great believer in using the internet and finding out things for myself something which Tom has no interest in. When he is feeling good he just wants to forget.Have any of you a high eosinophil count? I know this disease is not nice but believe me there are much worse. Take a look at Churg Strauss Syndrome and then you will be very thankful that its just Samter's that you have. Tom is being monitored for this at present and I am praying that its just Samter's that he has the other is way too debilitating.One other thing when we went for the allergy testing we were so happy. It was back in 2005. We thought we were going to find out what was driving these polyps. However, when we went for the results we got a big shock. No allergies but there was a monoclonal immunoglobulin (IgG) which at that stage was at level 5. In my innocence I asked the Doctor what this showed and he stated it could be a carcinogenic indicator. This level has now increased to 11. We now know that infection can also give this result even though Toms blood tests do not indicate infection. Dr. Scadding is now trying to get a handle on a very complicated picture and is the first Doctor that we have met in years who is taking a look at everything that is going on with Tom.I could write a book on the whole thing. Right now he is doing very well so its fingers crossed. Our next visit to London will hopefully shed more light.He also uses Neilmed Sinurinse to irrigate his nose - it can be got in Boots and was recommended by Dr Scadding.Breda Introduction - long postHi to All,I have just found this board and am still finding my way around it soplease excuse my inexperience in posting.My husband has been diagnosed with Samter's Triad however due toongoing problems our specialist is monitoring him for otherpossibilities e,g Churg Strauss.He started Aspirin Desensitization last September in London (we livein Ireland). He is actually taking lysine aspirin intranasally 9 dropseach nostril. He reacted to 12mg aspirin during his initial aspirinchallenge. After 3 months we returned and commenced oral as well asnasal administration. However within days of returning home he had amajor reaction and as a result has to stop the oral but is continuingon the nasal application.He like many of you has no smell, taste and suffers for earcongestion. The only thing that appears to offer relief is that he hashad grommets inserted as he was prone to perforations and is resistantto many antibiotics.At present he is on long term distaclor but at the minute his ears areclogged and his hearing is affected.He has had several surgeries for polyps. The last two being in Americawhere he underwent computer guided FESS. This is not available inIreland. During surgery in New York it was discovered that during hisprevious surgery in Ireland his turbinates were straightened whichresulted in the blockage of the sinus drainage passages in his nose.The result was mucus and infection had no escape and also aggressivepolyps had eroded his cribriform plate as well as the bone between hisnose and eyes. Since we started aspirin desensitisation last september he has had thefollowing:- (1) Grommets inserted (2) pnuemonia (3)fallen and brokenhis arm requiring 3 pins (due to osteoporosis from steroids) (4)adverse reaction to the desensitization (5) impetigo (6) shingle (7)folliculitis and this does not include minor facial swelling andbreathing problems that occur from time to time.So, I definitely think that membership of this group will be ofassistance to me and hopefully I will learn something from readingyour posts. One final thing allergy testing has shown no allergiesexcept aspirin sensitivity.Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Breda (and Tom), I for myself wellcome you too to this group. To me also it has been a great relief to know that " I'm not the only one in the whole wide world with this condition " . Also the helpful ideas, advice and knowledge that the other group members have offered have often times proven to be invaluable. You asked about the eosinophiles. I think than the abstract (underneath) of an article, which I detected some time last fall, describes the Samter's triad condition (at least for me!) very well. The article as you can see, has been written already in 1988! (I myself have also had very difficult ear problems for years due to Samter's triad - plus on top of everything a sudden deafness condition in my right ear since last fall.) But the article anyway says that: " Many patients with Samter's syndrome also have a marked eosinophilia of both bronchial and nasal secretions as well as the circulating blood. " I wish you strength to keep going. Best regards, " Zeitz HJ. Rush Medical College, Chicago, Illinois. Clin Chest Med. 1988 Dec;9(4):567-76. Bronchial asthma, nasal polyps, and aspirin sensitivity: Samter's syndrome. The historic triad of bronchial asthma, nasal polyposis, and intolerance to aspirin and related chemicals, recently designated as Samter's syndrome, is an inflammatory condition of unknown etiology and pathogenesis. The condition is probably acquired, perhaps secondary to a viral infection, but a hereditary factor may be important in some patients. Most patients with this syndrome are adults, with an occasional case being identified in a teenager or older child. Although not every patient will have the fully developed syndrome, the typical patient will have all three of the classic features. Many patients with Samter's syndrome also have a marked eosinophilia of both bronchial and nasal secretions as well as the circulating blood. Approximately 10 per cent of the patients have urticaria and/or angioedema, alone or in combination with respiratory inflammation. The diagnosis usually can be established easily on the basis of the history and physical examination, and only rarely in clinical practice is it necessary to perform a confirmatory aspirin challenge test. As with all allergic diseases, the cornerstone of treatment is environmental control with avoidance of respiratory irritants, aspirin, and aspirin-like medications. Management of upper airway disease requires careful prescription of medication supplemented by judicious selection of surgery. A variety of medications, including bronchodilators and corticosteroids, can be used to treat the bronchial symptoms. The results of current research are expected to lead to better understanding followed by further improvements in treatment for patients with Samter's syndrome. " > > Hi Mike, Jane and , > > Thanks for replying to my post. > > Unfortunately there is no Dutch background Mike - Breda is a derivtive of Bridget a typical Irish name. > > As I said in my previous post Tom had three surgeries in the United States 2 in 2005 and follow up in 2006. Last year our Specialist here in Ireland decided that more surgery was required and wanted us to return to New York. However, we did not want to go back to New York - its too far, expensive and takes up a lot of time and when you have a family this is hard. So I went on the internet to see if I could find someplace closer to home and found Prof. Lund at the Royal National Throat Nose and Ear Hospital, Grays Inn Road, London. We got an appointment with both Prof. Lund and Dr, Glenis Scadding (Rhinologist, Allergist and Immunologist). During our consultation they decided to go the desensitization route rather than more invasive surgery. We couldn't be happier. We have more involvement with Dr Scadding and she is a truly lovely person. We travel every three months and as we live in southwest Ireland we have at times had consultations by > phone. > > The other thing I know is that the desensitisation programme we are on involves lysine aspirin. Dr. Scadding has told us that this form of treatment is only available with them and in France. It is administerd in liquid form through 9 drops in each nostril so the aspirin directly hits the polyps. As Toms polyps are high up in the nose he has to get into some amusing positions to ensure that it hits the spot. However, when he attempted to progress and take some orally as well he had a very bad reaction, so right now we don't know where we stand. > > Tom has spent years going from one Specialist to another. Eventually due to his declining health I became more involved.This is because he has a terrible memory and tends to forget incidents, which I do not. I am a great believer in using the internet and finding out things for myself something which Tom has no interest in. When he is feeling good he just wants to forget. > > Have any of you a high eosinophil count? > > I know this disease is not nice but believe me there are much worse. Take a look at Churg Strauss Syndrome and then you will be very thankful that its just Samter's that you have. Tom is being monitored for this at present and I am praying that its just Samter's that he has the other is way too debilitating. > > One other thing when we went for the allergy testing we were so happy. It was back in 2005. We thought we were going to find out what was driving these polyps. However, when we went for the results we got a big shock. No allergies but there was a monoclonal immunoglobulin (IgG) which at that stage was at level 5. In my innocence I asked the Doctor what this showed and he stated it could be a carcinogenic indicator. This level has now increased to 11. We now know that infection can also give this result even though Toms blood tests do not indicate infection. Dr. Scadding is now trying to get a handle on a very complicated picture and is the first Doctor that we have met in years who is taking a look at everything that is going on with Tom. > > I could write a book on the whole thing. Right now he is doing very well so its fingers crossed. Our next visit to London will hopefully shed more light. > > He also uses Neilmed Sinurinse to irrigate his nose - it can be got in Boots and was recommended by Dr Scadding. > > Breda > > > > Introduction - long post > > > Hi to All, > > I have just found this board and am still finding my way around it so > please excuse my inexperience in posting. > > My husband has been diagnosed with Samter's Triad however due to > ongoing problems our specialist is monitoring him for other > possibilities e,g Churg Strauss. > > He started Aspirin Desensitization last September in London (we live > in Ireland). He is actually taking lysine aspirin intranasally 9 drops > each nostril. He reacted to 12mg aspirin during his initial aspirin > challenge. After 3 months we returned and commenced oral as well as > nasal administration. However within days of returning home he had a > major reaction and as a result has to stop the oral but is continuing > on the nasal application. > > He like many of you has no smell, taste and suffers for ear > congestion. The only thing that appears to offer relief is that he has > had grommets inserted as he was prone to perforations and is resistant > to many antibiotics. > > At present he is on long term distaclor but at the minute his ears are > clogged and his hearing is affected. > > He has had several surgeries for polyps. The last two being in America > where he underwent computer guided FESS. This is not available in > Ireland. During surgery in New York it was discovered that during his > previous surgery in Ireland his turbinates were straightened which > resulted in the blockage of the sinus drainage passages in his nose. > The result was mucus and infection had no escape and also aggressive > polyps had eroded his cribriform plate as well as the bone between his > nose and eyes. > > Since we started aspirin desensitisation last september he has had the > following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken > his arm requiring 3 pins (due to osteoporosis from steroids) (4) > adverse reaction to the desensitization (5) impetigo (6) shingle (7) > folliculitis and this does not include minor facial swelling and > breathing problems that occur from time to time. > > So, I definitely think that membership of this group will be of > assistance to me and hopefully I will learn something from reading > your posts. One final thing allergy testing has shown no allergies > except aspirin sensitivity. > > Breda > > > > ________________________________ > Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 ,Thank you very much for this link.I believe that surfing the net I found an article that mentioned that there was a mention of Samter's Quartet - this includes associated ear problems as well as asthma, polyps and aspirin sensitivity of Samter's Triad. Introduction - long post > > > Hi to All, > > I have just found this board and am still finding my way around it so > please excuse my inexperience in posting. > > My husband has been diagnosed with Samter's Triad however due to > ongoing problems our specialist is monitoring him for other > possibilities e,g Churg Strauss. > > He started Aspirin Desensitization last September in London (we live > in Ireland). He is actually taking lysine aspirin intranasally 9 drops > each nostril. He reacted to 12mg aspirin during his initial aspirin > challenge. After 3 months we returned and commenced oral as well as > nasal administration. However within days of returning home he had a > major reaction and as a result has to stop the oral but is continuing > on the nasal application. > > He like many of you has no smell, taste and suffers for ear > congestion. The only thing that appears to offer relief is that he has > had grommets inserted as he was prone to perforations and is resistant > to many antibiotics. > > At present he is on long term distaclor but at the minute his ears are > clogged and his hearing is affected. > > He has had several surgeries for polyps. The last two being in America > where he underwent computer guided FESS. This is not available in > Ireland. During surgery in New York it was discovered that during his > previous surgery in Ireland his turbinates were straightened which > resulted in the blockage of the sinus drainage passages in his nose. > The result was mucus and infection had no escape and also aggressive > polyps had eroded his cribriform plate as well as the bone between his > nose and eyes. > > Since we started aspirin desensitisation last september he has had the > following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken > his arm requiring 3 pins (due to osteoporosis from steroids) (4) > adverse reaction to the desensitization (5) impetigo (6) shingle (7) > folliculitis and this does not include minor facial swelling and > breathing problems that occur from time to time. > > So, I definitely think that membership of this group will be of > assistance to me and hopefully I will learn something from reading > your posts. One final thing allergy testing has shown no allergies > except aspirin sensitivity. > > Breda > > > > ____________ _________ _________ __ > Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Breda and welcome to the group. I live in Australia and have had Samters for about thirty years now and in total have had six operations for polyps. I haven’t been desensitized to aspirin as no doctor I’ve come across is willing to do it. My sinus and asthma get worse in long spells of wet weather and high humidity but most of the time it’s under control mainly due to me taking prednisone when needed. I’ve been allergy tested and supposedly have no allergies except for the aspirin which I find a little difficult to believe but who can argue (and win) with a doctor. I also have osteopenia. samters From: zippyelle Date: Sat, 14 Jun 2008 23:36:21 +0000 Subject: Introduction - long post Hi to All, I have just found this board and am still finding my way around it so please excuse my inexperience in posting. My husband has been diagnosed with Samter's Triad however due to ongoing problems our specialist is monitoring him for other possibilities e,g Churg Strauss. He started Aspirin Desensitization last September in London (we live in Ireland). He is actually taking lysine aspirin intranasally 9 drops each nostril. He reacted to 12mg aspirin during his initial aspirin challenge. After 3 months we returned and commenced oral as well as nasal administration. However within days of returning home he had a major reaction and as a result has to stop the oral but is continuing on the nasal application. He like many of you has no smell, taste and suffers for ear congestion. The only thing that appears to offer relief is that he has had grommets inserted as he was prone to perforations and is resistant to many antibiotics. At present he is on long term distaclor but at the minute his ears are clogged and his hearing is affected. He has had several surgeries for polyps. The last two being in America where he underwent computer guided FESS. This is not available in Ireland. During surgery in New York it was discovered that during his previous surgery in Ireland his turbinates were straightened which resulted in the blockage of the sinus drainage passages in his nose. The result was mucus and infection had no escape and also aggressive polyps had eroded his cribriform plate as well as the bone between his nose and eyes. Since we started aspirin desensitisation last september he has had the following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken his arm requiring 3 pins (due to osteoporosis from steroids) (4) adverse reaction to the desensitization (5) impetigo (6) shingle (7) folliculitis and this does not include minor facial swelling and breathing problems that occur from time to time. So, I definitely think that membership of this group will be of assistance to me and hopefully I will learn something from reading your posts. One final thing allergy testing has shown no allergies except aspirin sensitivity. Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Sent from . A Smarter Email. No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1503 - Release Date: 6/14/2008 6:02 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi ,Thanks for the welcome. Its great to see so many people with the same problems. We know of no one else so it is hard to talk and seek advice. I do know of lots of people with asthma and they do not have all the problems that Tom has. They use their inhalers and get relief. I mentioned this lately to one doctor and his reply was that Tom does not have typical asthma - he has a very aggressive form. I think that maybe the use of the term asthma is incorrect in Samter's - it should be called something else to distinguish it from the common garder variety. That way I won't be getting many of the silly looks from people who think I am blowing Toms health problems out of proportion. I will let you know how we get on with this desensitisation programme. It would appear that it is very popular in the states so maybe in time it will become the norm everywhere. Breda Introduction - long post Hi to All, I have just found this board and am still finding my way around it so please excuse my inexperience in posting. My husband has been diagnosed with Samter's Triad however due to ongoing problems our specialist is monitoring him for other possibilities e,g Churg Strauss. He started Aspirin Desensitization last September in London (we live in Ireland ). He is actually taking lysine aspirin intranasally 9 drops each nostril. He reacted to 12mg aspirin during his initial aspirin challenge. After 3 months we returned and commenced oral as well as nasal administration. However within days of returning home he had a major reaction and as a result has to stop the oral but is continuing on the nasal application. He like many of you has no smell, taste and suffers for ear congestion. The only thing that appears to offer relief is that he has had grommets inserted as he was prone to perforations and is resistant to many antibiotics. At present he is on long term distaclor but at the minute his ears are clogged and his hearing is affected. He has had several surgeries for polyps. The last two being in America where he underwent computer guided FESS. This is not available in Ireland . During surgery in New York it was discovered that during his previous surgery in Ireland his turbinates were straightened which resulted in the blockage of the sinus drainage passages in his nose. The result was mucus and infection had no escape and also aggressive polyps had eroded his cribriform plate as well as the bone between his nose and eyes. Since we started aspirin desensitisation last september he has had the following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken his arm requiring 3 pins (due to osteoporosis from steroids) (4) adverse reaction to the desensitization (5) impetigo (6) shingle (7) folliculitis and this does not include minor facial swelling and breathing problems that occur from time to time. So, I definitely think that membership of this group will be of assistance to me and hopefully I will learn something from reading your posts. One final thing allergy testing has shown no allergies except aspirin sensitivity. Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Sent from . A Smarter Email. No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1503 - Release Date: 6/14/2008 6:02 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Breda, I only know of one other person in Australia with Samters and she’s also in the group. I can’t believe there’s so few around unless of course people have it and don’t have a name for it. I think a person gets to a point that they’re almost willing to travel to the ends of the earth just to try something new in the hope it’ll be THE treatment that’ll work for them. One thing I’ve noticed though is that what works for one person doesn’t necessarily work for another. Very frustrating but I’ve learnt a great deal since joining the group. I get so fed up with people asking me if I have a cold when I have sinus problems that most of the time I just say yes. It’s the easier option than saying sinus problems I’ve found. Cheers From: Breda OBrien [mailto:zippyelle@...] Sent: Sunday, 15 June 2008 10:12 PM samters Subject: Re: Introduction - long post Hi , Thanks for the welcome. Its great to see so many people with the same problems. We know of no one else so it is hard to talk and seek advice. I do know of lots of people with asthma and they do not have all the problems that Tom has. They use their inhalers and get relief. I mentioned this lately to one doctor and his reply was that Tom does not have typical asthma - he has a very aggressive form. I think that maybe the use of the term asthma is incorrect in Samter's - it should be called something else to distinguish it from the common garder variety. That way I won't be getting many of the silly looks from people who think I am blowing Toms health problems out of proportion. I will let you know how we get on with this desensitisation programme. It would appear that it is very popular in the states so maybe in time it will become the norm everywhere. Breda Introduction - long post Hi to All, I have just found this board and am still finding my way around it so please excuse my inexperience in posting. My husband has been diagnosed with Samter's Triad however due to ongoing problems our specialist is monitoring him for other possibilities e,g Churg Strauss. He started Aspirin Desensitization last September in London (we live in Ireland ). He is actually taking lysine aspirin intranasally 9 drops each nostril. He reacted to 12mg aspirin during his initial aspirin challenge. After 3 months we returned and commenced oral as well as nasal administration. However within days of returning home he had a major reaction and as a result has to stop the oral but is continuing on the nasal application. He like many of you has no smell, taste and suffers for ear congestion. The only thing that appears to offer relief is that he has had grommets inserted as he was prone to perforations and is resistant to many antibiotics. At present he is on long term distaclor but at the minute his ears are clogged and his hearing is affected. He has had several surgeries for polyps. The last two being in America where he underwent computer guided FESS. This is not available in Ireland .. During surgery in New York it was discovered that during his previous surgery in Ireland his turbinates were straightened which resulted in the blockage of the sinus drainage passages in his nose. The result was mucus and infection had no escape and also aggressive polyps had eroded his cribriform plate as well as the bone between his nose and eyes. Since we started aspirin desensitisation last september he has had the following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken his arm requiring 3 pins (due to osteoporosis from steroids) (4) adverse reaction to the desensitization (5) impetigo (6) shingle (7) folliculitis and this does not include minor facial swelling and breathing problems that occur from time to time. So, I definitely think that membership of this group will be of assistance to me and hopefully I will learn something from reading your posts. One final thing allergy testing has shown no allergies except aspirin sensitivity. Breda Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! Sent from . A Smarter Email. No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1503 - Release Date: 6/14/2008 6:02 PM No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1503 - Release Date: 6/14/2008 6:02 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Happy fathersday fellas Sent from my BlackBerry® wireless handheld Introduction - long post Hi to All, I have just found this board and am still finding my way around it so please excuse my inexperience in posting. My husband has been diagnosed with Samter's Triad however due to ongoing problems our specialist is monitoring him for other possibilities e,g Churg Strauss. He started Aspirin Desensitization last September in London (we live in Ireland). He is actually taking lysine aspirin intranasally 9 drops each nostril. He reacted to 12mg aspirin during his initial aspirin challenge. After 3 months we returned and commenced oral as well as nasal administration. However within days of returning home he had a major reaction and as a result has to stop the oral but is continuing on the nasal application. He like many of you has no smell, taste and suffers for ear congestion. The only thing that appears to offer relief is that he has had grommets inserted as he was prone to perforations and is resistant to many antibiotics. At present he is on long term distaclor but at the minute his ears are clogged and his hearing is affected. He has had several surgeries for polyps. The last two being in America where he underwent computer guided FESS. This is not available in Ireland. During surgery in New York it was discovered that during his previous surgery in Ireland his turbinates were straightened which resulted in the blockage of the sinus drainage passages in his nose. The result was mucus and infection had no escape and also aggressive polyps had eroded his cribriform plate as well as the bone between his nose and eyes. Since we started aspirin desensitisation last september he has had the following:- (1) Grommets inserted (2) pnuemonia (3)fallen and broken his arm requiring 3 pins (due to osteoporosis from steroids) (4) adverse reaction to the desensitization (5) impetigo (6) shingle (7) folliculitis and this does not include minor facial swelling and breathing problems that occur from time to time. So, I definitely think that membership of this group will be of assistance to me and hopefully I will learn something from reading your posts. One final thing allergy testing has shown no allergies except aspirin sensitivity. Breda ---------------- Miss your Messenger buddies when on-the-go? Get Messenger on your Mobile! <http://clk.atdmt.com/UKM/go/msnnkmgl0010000001ukm/direct/01/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Dr. Scadding appears to specialize in lysine-aspirine desens. Nasal desens limits the number of relapses, but it is not guaranteed it will work in everyone, nor that it will work indefinitely (the risk of relapse may increase with time). When it does works, however, its major advantage is that it spares the patient from the systemic side-effects of aspirin.You mentioned that Dr. Scadding said nasal desens is performed in France, but I have no idea where - they don't seem to advertise for it here.See :http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed & pubmedid=10992567And :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 of intranasal lysine-aspirin administration on resistant nasal polyps of asthmatic, aspirin-intolerant patients, when used in addition to routine therapy.PATIENTS AND METHODS: Thirteen patients with asthma and intolerance to aspirin were recruited. All but one had undergone numerous polypectomies and were uncontrolled on standard therapy with intranasal corticosteroids, leukotriene receptor antagonists and nasal douching. Aspirin treatment involved one drop (100 microl) of 30 mg/ml lysine-aspirin solution to each nostril, initially daily, increased every 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, peak expiratory flow rate and nasendoscopic grading were assessed prior to therapy and three months later. We also compared the change in endoscopic polyp scores during three months of lysine-aspirin administration with the changes which had occurred during the three months prior to administration (during which time other therapies had been identical).RESULTS: Nasal blockage symptoms tended to decrease; other nasal symptoms were unchanged. Significant changes were seen in nasal 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 on nasendoscopic examination were significantly reduced (right side, p = 0.027; left side, p = 0.018). Compared with the preceding three months, adding intranasal lysine-aspirin application had the effect on decreasing nasal polyp volume (right side, p = 0.031; left side, p = 0.016).CONCLUSION: This open study suggests that intranasal lysine-aspirin administration reduces nasal polyp volume in aspirin-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. Laryngoscope. 2005 Aug;115(8):1385-90. LinksIntranasal lysine-aspirin in aspirin-sensitive nasal polyposis: a controlled trial.Parikh AA, Scadding GK.St. 's Hospital, Praed Street, London W2 1NY, UK. abhijeetparikh@...OBJECTIVES/HYPOTHESIS: Intranasal lysine-aspirin has been used as a method of desensitization in patients with aspirin-sensitive nasal polyps to control their recurrence and prevent frequent surgical intervention. However, the studies are limited in number, and their design is open to criticisms. Thus, we conducted a controlled trial to study the clinical effectiveness of topical lysine-aspirin in patients with aspirin-sensitive nasal polyposis.STUDY DESIGN: Prospective, randomized, double blind, placebo controlled, crossover trial.METHODS: Aspirin-sensitive patients confirmed by intranasal challenge were enrolled and randomized to receive 16 mg of topical lysine-aspirin every 48 hours or placebo for 6 months before crossover. Polyp growth and nasal and chest symptoms were monitored using acoustic rhinometry, nasal inspiratory peak flow, peak expiratory flow rate, and a daily diary of symptom scores. RESULTS: Twenty-two patients were enrolled. After withdrawals and drop outs, data were available on 11 patients for analysis. Multivariate analysis of measured parameters did not reveal a significant clinical benefit to patients receiving topical lysine-aspirin compared with placebo. Deterioration was similar while on lysine-aspirin or placebo. CONCLUSIONS: This is the first controlled clinical trial of topical desensitization in aspirin-sensitive nasal polyp patients. Despite the failure to demonstrate clinical benefit, tissue studies have shown a significant improvement at the microscopic level. Further work with larger numbers of patients along with conventional treatment may show a clinical improvement in these patients.Allergy. 1998 Apr;53(4):431-4.LinksGrowth inhibition of fibroblasts from nasal polyps and normal skin by lysine acetylsalicylate.Bruzzese N, Sica G, Iacopino F, Paludetti G, Schiavino D, Nucera E, Scarano E, Patriarca G.Institute of Histology and Embryology, Catholic University of the Sacred Heart, Rome, Italy.Some authors have shown that lysine acetylsalicylate (LAS) may help prevent nasal polyp relapses. As some anti-inflammatory drugs have been found to regulate cell growth, we investigated the antiproliferative effect of LAS on fibroblasts derived from nasal polyps. Moreover, we studied the effect of LAS on the growth of fibroblasts derived from normal skin to determine whether the response was similar to that obtained in the above-mentioned cells. Fibroblasts were obtained from tissue samples of nasal polyps from two aspirin-tolerant and two aspirin-intolerant patients, and from the normal skin of a healthy donor. The cells were treated with LAS (20-2000 microg/ml of culture medium). Cell growth and viability were evaluated after 3 and 6 days of culture. LAS had a growth-inhibitory effect on cells independently of their derivation. A reduction in cell growth was seen at the concentrations of LAS tested, which correspond to those used in the local treatment of nasal polyposis.Clin Otolaryngol Allied Sci. 1995 Dec;20(6):561-3.LinksIntranasal lysine aspirin in recurrent nasal polyposis.Scadding GK, Hassab M, Darby YC, Lund VJ, Freedman A.Royal National Throat, Nose and Ear Hospital NHS Trust, London, UK.Twenty patients with recurrent nasal polyposis but without any history of aspirin sensitivity were given 2000 micrograms of intranasal lysine aspirin to one nostril and saline to the other once a week for periods of up to 15 months. Two patients had increased nasal obstruction following the initial test doses of lysine aspirin and were excluded from the trial proper. In the remainder symptomatic polyp recurrence was delayed compared with the previous experience while on intranasal steroids, with eight patients remaining symptom free at 15 months compared with an expected number of three (P = < 0.05, chi 2 test). Polyp recurrence was bilateral but there was a tendency for the lysine aspirin treated side to have less polyp tissue as assessed by nasendoscopy and by acoustic rhinometry.Ann Allergy 1999 Jun;82(6):542.Intranasal treatment with lysine acetylsalicylate in patients with nasal polyposis.Patriarca G, Bellioni P, Nucera E, Schiavino D, Papa G, Schinco G, Fais G, Pirotta LR.Department of Allergology, Catholic University of Rome, Italy.Forty-three patients suffering from nasal polyposis underwent intranasal treatment with increasing doses of lysine acetylsalicylate (LAS) corresponding to 20, 200, and 2000 micrograms of aspirin (ASA), until a maximal dose of 2000 micrograms weekly was reached. The patients were divided in two groups: a group of 28 patients with ASA intolerance, including 20 with ASA triad, and a group of 15 patients without ASA intolerance. The local treatment was usually started 1 month after polypectomy and was well tolerated without side effects. A control group included 191 subjects with nasal polyposis, 130 of whom had ASA intolerance. After polypectomy the controls received no further medical treatment. Patients were examined every 3 months and radiographs of the paranasal sinuses were obtained every 6 months. After 24 months 34 of 43 patients (79.1%) treated with topical LAS had suffered no relapse of polyposis. Only 45 of 191 control patients (23.6%) failed to relapse after 24 months (P less than .0001). Nine of 28 (32.1%) ASA-intolerant patients treated with LAS and 105 of the 130 (80.77%) control subjects relapsed (P less than .0001). None of the 15 ASA-tolerant patients treated with LAS relapsed, but 41 of the 61 (67.21%) nontreated control subjects relapsed (P less than .00001). These data indicate topical LAS is effective in preventing recurrence of nasal polyps after polypectomy.>> Hi Breda,> > > > I only know of one other person in Australia with Samters and she's also in> the group. I can't believe there's so few around unless of course people> have it and don't have a name for it. > > > > I think a person gets to a point that they're almost willing to travel to> the ends of the earth just to try something new in the hope it'll be THE> treatment that'll work for them. One thing I've noticed though is that what> works for one person doesn't necessarily work for another. Very frustrating> but I've learnt a great deal since joining the group.> > > > I get so fed up with people asking me if I have a cold when I have sinus> problems that most of the time I just say yes. It's the easier option than> saying sinus problems I've found.> > > > Cheers> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Asfyso,Thanks for that. Looks like we need to keep more than our fingers crossed in this instance. We are due back again in September and will then know how things are going. I do know that on our second visit the nasal polyps had decreased and were a Grade 1. On our third and last visit after Tom had to stop oral application they were Grade 2. Amazingly he had been on steroids for most of that time. The only answer that I can think of is colonization by staph. I read on the internet that they produce toxins that can result in polyps. So it could be a vicious circle - take pred - polyps reduce become immune suppressed get more infections and polyps reappear. Dr Scadding just happened to say that in passing and the only reason I remember it is that our health insurance will only cover us abroad if the same procedure is not being carried out in Ireland. However, we have a bit of a fight on our hands as we only got prior approval for surgery and not desensitisation.God its never ending.Breda Re: Introduction - long postDr. Scadding appears to specialize in lysine-aspirine desens. Nasal desens limits the number of relapses, but it is not guaranteed it will work in everyone, nor that it will work indefinitely (the risk of relapse may increase with time). When it does works, however, its major advantage is that it spares the patient from the systemic side-effects of aspirin.You mentioned that Dr. Scadding said nasal desens is performed in France, but I have no idea where - they don't seem to advertise for it here.See :http://www.pubmedce ntral.nih. gov/articlerende r.fcgi?tool= pubmed & pubmedid=10992567And :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 of intranasal lysine-aspirin administration on resistant nasal polyps of asthmatic, aspirin-intolerant patients, when used in addition to routine therapy.PATIENTS AND METHODS: Thirteen patients with asthma and intolerance to aspirin were recruited. All but one had undergone numerous polypectomies and were uncontrolled on standard therapy with intranasal corticosteroids, leukotriene receptor antagonists and nasal douching. Aspirin treatment involved one drop (100 microl) of 30 mg/ml lysine-aspirin solution to each nostril, initially daily, increased every 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, peak expiratory flow rate and nasendoscopic grading were assessed prior to therapy and three months later. We also compared the change in endoscopic polyp scores during three months of lysine-aspirin administration with the changes which had occurred during the three months prior to administration (during which time other therapies had been identical).RESULTS: Nasal blockage symptoms tended to decrease; other nasal symptoms were unchanged. Significant changes were seen in nasal 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 on nasendoscopic examination were significantly reduced (right side, p = 0.027; left side, p = 0.018). Compared with the preceding three months, adding intranasal lysine-aspirin application had the effect on decreasing nasal polyp volume (right side, p = 0.031; left side, p = 0.016).CONCLUSION: This open study suggests that intranasal lysine-aspirin administration reduces nasal polyp volume in aspirin-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. Laryngoscope. 2005 Aug;115(8):1385- 90. LinksIntranasal lysine-aspirin in aspirin-sensitive nasal polyposis: a controlled trial.Parikh AA, Scadding GK.St. 's Hospital, Praed Street, London W2 1NY, UK. abhijeetparikh@ hotmail.comOBJECTIVES/HYPOTHES IS: Intranasal lysine-aspirin has been used as a method of desensitization in patients with aspirin-sensitive nasal polyps to control their recurrence and prevent frequent surgical intervention. However, the studies are limited in number, and their design is open to criticisms. Thus, we conducted a controlled trial to study the clinical effectiveness of topical lysine-aspirin in patients with aspirin-sensitive nasal polyposis.STUDY DESIGN: Prospective, randomized, double blind, placebo controlled, crossover trial.METHODS: Aspirin-sensitive patients confirmed by intranasal challenge were enrolled and randomized to receive 16 mg of topical lysine-aspirin every 48 hours or placebo for 6 months before crossover. Polyp growth and nasal and chest symptoms were monitored using acoustic rhinometry, nasal inspiratory peak flow, peak expiratory flow rate, and a daily diary of symptom scores. RESULTS: Twenty-two patients were enrolled. After withdrawals and drop outs, data were available on 11 patients for analysis. Multivariate analysis of measured parameters did not reveal a significant clinical benefit to patients receiving topical lysine-aspirin compared with placebo. Deterioration was similar while on lysine-aspirin or placebo. CONCLUSIONS: This is the first controlled clinical trial of topical desensitization in aspirin-sensitive nasal polyp patients. Despite the failure to demonstrate clinical benefit, tissue studies have shown a significant improvement at the microscopic level. Further work with larger numbers of patients along with conventional treatment may show a clinical improvement in these patients.Allergy. 1998 Apr;53(4):431- 4.LinksGrowth inhibition of fibroblasts from nasal polyps and normal skin by lysine acetylsalicylate.Bruzzese N, Sica G, Iacopino F, Paludetti G, Schiavino D, Nucera E, Scarano E, Patriarca G.Institute of Histology and Embryology, Catholic University of the Sacred Heart, Rome, Italy.Some authors have shown that lysine acetylsalicylate (LAS) may help prevent nasal polyp relapses. As some anti-inflammatory drugs have been found to regulate cell growth, we investigated the antiproliferative effect of LAS on fibroblasts derived from nasal polyps. Moreover, we studied the effect of LAS on the growth of fibroblasts derived from normal skin to determine whether the response was similar to that obtained in the above-mentioned cells. Fibroblasts were obtained from tissue samples of nasal polyps from two aspirin-tolerant and two aspirin-intolerant patients, and from the normal skin of a healthy donor. The cells were treated with LAS (20-2000 microg/ml of culture medium). Cell growth and viability were evaluated after 3 and 6 days of culture. LAS had a growth-inhibitory effect on cells independently of their derivation. A reduction in cell growth was seen at the concentrations of LAS tested, which correspond to those used in the local treatment of nasal polyposis.Clin Otolaryngol Allied Sci. 1995 Dec;20(6):561- 3.LinksIntranasal lysine aspirin in recurrent nasal polyposis.Scadding GK, Hassab M, Darby YC, Lund VJ, Freedman A.Royal National Throat, Nose and Ear Hospital NHS Trust, London, UK.Twenty patients with recurrent nasal polyposis but without any history of aspirin sensitivity were given 2000 micrograms of intranasal lysine aspirin to one nostril and saline to the other once a week for periods of up to 15 months. Two patients had increased nasal obstruction following the initial test doses of lysine aspirin and were excluded from the trial proper. In the remainder symptomatic polyp recurrence was delayed compared with the previous experience while on intranasal steroids, with eight patients remaining symptom free at 15 months compared with an expected number of three (P = < 0.05, chi 2 test). Polyp recurrence was bilateral but there was a tendency for the lysine aspirin treated side to have less polyp tissue as assessed by nasendoscopy and by acoustic rhinometry.Ann Allergy 1999 Jun;82(6):542.Intranasal treatment with lysine acetylsalicylate in patients with nasal polyposis.Patriarca G, Bellioni P, Nucera E, Schiavino D, Papa G, Schinco G, Fais G, Pirotta LR.Department of Allergology, Catholic University of Rome, Italy.Forty-three patients suffering from nasal polyposis underwent intranasal treatment with increasing doses of lysine acetylsalicylate (LAS) corresponding to 20, 200, and 2000 micrograms of aspirin (ASA), until a maximal dose of 2000 micrograms weekly was reached. The patients were divided in two groups: a group of 28 patients with ASA intolerance, including 20 with ASA triad, and a group of 15 patients without ASA intolerance. The local treatment was usually started 1 month after polypectomy and was well tolerated without side effects. A control group included 191 subjects with nasal polyposis, 130 of whom had ASA intolerance. After polypectomy the controls received no further medical treatment. Patients were examined every 3 months and radiographs of the paranasal sinuses were obtained every 6 months. After 24 months 34 of 43 patients (79.1%) treated with topical LAS had suffered no relapse of polyposis. Only 45 of 191 control patients (23.6%) failed to relapse after 24 months (P less than .0001). Nine of 28 (32.1%) ASA-intolerant patients treated with LAS and 105 of the 130 (80.77%) control subjects relapsed (P less than .0001). None of the 15 ASA-tolerant patients treated with LAS relapsed, but 41 of the 61 (67.21%) nontreated control subjects relapsed (P less than .00001). These data indicate topical LAS is effective in preventing recurrence of nasal polyps after polypectomy.>> Hi Breda,> > > > I only know of one other person in Australia with Samters and she's also in> the group. I can't believe there's so few around unless of course people> have it and don't have a name for it. > > > > I think a person gets to a point that they're almost willing to travel to> the ends of the earth just to try something new in the hope it'll be THE> treatment that'll work for them. One thing I've noticed though is that what> works for one person doesn't necessarily work for another. Very frustrating> but I've learnt a great deal since joining the group.> > > > I get so fed up with people asking me if I have a cold when I have sinus> problems that most of the time I just say yes. It's the easier option than> saying sinus problems I've found.> > > > Cheers> > > > Quote Link to comment Share on other sites More sharing options...
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