Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Christy I know how you feel about explaining your condition. If you go into detail you can see the eyes glaze over. I now say: "I have a combination of long term sinusitis, nasal polyps, asthma and acute alergic reaction to the aspirin family of drugs. The symptoms present like cystic fibrosis but rather than affecting the lungs the congestion is in the sinus" That seems to get the message over pretty quickly and the comparison to cystic fibrosis conveys how serious it can be. Now you know what you are up against and have the benefit of this pool of knowledge and shared experiences, at least it helps you come to terms with the condition and manage it as best you can. I start my course of singulair for the first time tonight..... Best wishes to all Samterites for the New Year Mike samters From: whitech@...Date: Sun, 28 Dec 2008 18:43:57 +0000Subject: New here- My story I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters.I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects.Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you!Christy Great search results, great prizes. BigSnapSearch.com Search now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi Christy,I can totally relate to that. I used to work as a nanny before I was diagnosed. I knew I had allergic rhinitis and was not infectious but my employer didn't believe me and had me wear face masks all the time. Felt like an idiot and had problems getting to the nose drips in time!!Maggiesamters From: whitech@...Date: Sun, 28 Dec 2008 18:43:57 +0000Subject: New here- My story I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters. I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects. Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you! Christy Win a trip with your 3 best buddies. Enter today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Singulair does not work on a non-negligible minority of patients because of genetic differences. Zyflo, another leukotriene modifier with a different mechanism of action, could be an option. http://www.medscape.com/viewarticle/440964_3 Many patients report that (once/twice) daily irrigation with lukewarm saline does help a lot. Be sure to disinfect correctly any device used to avoid inviting bacterial contaminants into your nose. If your sinuses have been opened by surgery (FESS) then irrigating with a lower dose of corticoids than the one used in sprays could also be an option. For asthma as well as upper airways inflammation, nebulizing with cromoglycates is also interesting and might help lower the corticoid dose (cromoglycates were used against asthma before the advent of corticoids). Polyps are self-sustained to some extent but also have triggers : viruses, molds/fungi, allergens, chemical air pollution, foods, whatever, and often several. Identifying them may help (ex : allergy desensitization). > > I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years > and have had asthma symptoms for the last 8 years. About two years ago, I had a severe > reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve > (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended > up in the emergency room again. This diagnosed the NSAID allergy and we began to put > all the pieces together and came up with Samters. > > I have been on Singulair for years, and to be honest, I don't notice a difference at all. The > nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a > little. My last surgery got rid of polyps for several weeks but at my check up appointment, > they were already growing back. > > Right now I am on another round of prednisone. Twenty five day taper. This is the 6th > round I have been on in 2008. This week I can smell and taste food! I worry about long > term effects. > > Now that we know what is wrong, were do we go from here? I have spent the morning > reading all the posts and have loads more information. Thank you all. > > Another question... how do you explain this to other people? It seems so complicated and > people look at me like I am crazy or over-reacting. No one seems to understand the > diminished quality of life. What wording do you use when people say " you have a cold... > again... you are so stopped up " I need an easy way to explain that I am not contagious > and just have Samters. Any ideas would be great. > > Thanks! I look forward to learning from all of you! > Christy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi Mike and Welcome aboard and Mike, i just wanted to say that i too have on occasion likened this illness to Cystic fibrosis, but of the sinuses. I do find though that people sometimes feel I am over-reacting!! But sometimes it IS difficult expressing just how unpleasant and difficult this disease can be. I won't go on because I'm feeling rather miserable and am in danger of wallowing in self pity! But I did find it interesting that others have compared this with cystic fibrosis. After all - we take a lot of similar medication - for the respiritory tract as well as the stomach/digestion too. Happy New year! Becky Mike Hammond <rovenmike@...> wrote: Christy I know how you feel about explaining your condition. If you go into detail you can see the eyes glaze over. I now say: "I have a combination of long term sinusitis, nasal polyps, asthma and acute alergic reaction to the aspirin family of drugs. The symptoms present like cystic fibrosis but rather than affecting the lungs the congestion is in the sinus" That seems to get the message over pretty quickly and the comparison to cystic fibrosis conveys how serious it can be. Now you know what you are up against and have the benefit of this pool of knowledge and shared experiences, at least it helps you come to terms with the condition and manage it as best you can. I start my course of singulair for the first time tonight..... Best wishes to all Samterites for the New Year Mike samters From: whitechymailDate: Sun, 28 Dec 2008 18:43:57 +0000Subject: New here- My story I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters.I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects.Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you!Christy Great search results, great prizes. BigSnapSearch.com Search now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Welcome to the group Christy. You will find a wealth of information that comes from people across the globe with this condition. I feel for you being on Prednisone again and currently, I too am on Prednisone again for the 3rd time since October. I wish I could give you answers that would solve this condition for you. I will share with you that I have finally gotten to the point where I will tell people that I have Sinus disease, caused by an allergy to aspirin and that it is a chronic condition. People still look at me like I have the plague! I am currently trying to alter my diet in hopes that removing any food alleries will help support my immunity which is shot right now. Tomorrow my respiratory doctor is going to test me for food allergies. I know that I am allergic to wheat and suspect that I have a gluten intolerance. We'll see. I believe that all we can do right now, until there is a medical breakthrough on this disease, is to keep our immune systems as healthy as possible. Unfortunately we compromise our immune systems with all the medications we have to live on. Such a double standard! If nothing else Christy, those in this group are the only individuals on the planet that can truly relate to what you are going through. I find this group as a great comfort to me. Somehow knowing there are others experiencing Samters and sharing strategies is a comfort to me. Best Wishes. Jane From: whitech@... <whitech@...>Subject: New here- My storysamters Date: Sunday, December 28, 2008, 11:43 AM I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters.I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects.Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you!Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 My ENT prescribed it to me after my last polyp surgery in the hope it’d prevent more polyps returning. That was three and a half years ago and so far so good. It takes about a week or two before it ‘kicks in’ but with me, it’s been successful. The only sinus infections I’ve had since starting it is if I’ve caught a bad cold and have contracted the infections that way. I have to be completely honest here though, I sometimes forget to use it, particularly the second dose at night. From: Jane Marino [mailto:janesmarino@...] Sent: Monday, 29 December 2008 2:19 PM samters Subject: RE: New here- My story How effective or helpful is Nasonex? I have it, but honestly haven't used it much. Does anyone feel like it is a help in dealing with or avoiding sinus infections? Jane From: whitechymail (DOT) com <whitechymail (DOT) com> Subject: New here- My story samters@groups .com Date: Sunday, December 28, 2008, 11:43 AM I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters. I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects. Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say " you have a cold... again... you are so stopped up " I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 I used Nasonex (mometasone furoate) for a couple of years, then switched to Rhinocort (budesonide), because Rhinocort is benzalkonium-chloride-free. Benzalkonium chloride has been shown to hurt nasal epithelium ciliae. Now, some may find nasonex more efficient than rhinocort, or vice-versa. > > From: whitechymail (DOT) com whitechymail (DOT) com> > Subject: New here- My story > samters@groups .com > Date: Sunday, December 28, 2008, 11:43 AM > > > > I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years > and have had asthma symptoms for the last 8 years. About two years ago, I had a severe > reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve > (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended > up in the emergency room again. This diagnosed the NSAID allergy and we began to put > all the pieces together and came up with Samters. > > I have been on Singulair for years, and to be honest, I don't notice a difference at all. The > nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a > little. My last surgery got rid of polyps for several weeks but at my check up appointment, > they were already growing back. > > Right now I am on another round of prednisone. Twenty five day taper. This is the 6th > round I have been on in 2008. This week I can smell and taste food! I worry about long > term effects. > > Now that we know what is wrong, were do we go from here? I have spent the morning > reading all the posts and have loads more information. Thank you all. > > Another question... how do you explain this to other people? It seems so complicated and > people look at me like I am crazy or over-reacting. No one seems to understand the > diminished quality of life. What wording do you use when people say " you have a cold... > again... you are so stopped up " I need an easy way to explain that I am not contagious > and just have Samters. Any ideas would be great. > > Thanks! I look forward to learning from all of you! > Christy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Welcome, Christy! No sense trying to explain Samters to others. Just tell them you have chronic sinus problems (or allergies) and asthma and let it go at that. Most people can relate to the misery of one or both. My polyps grew back quickly after surgery, as well, but Flovent sprayed in my nose has really helped slow things down. Polyps are there, but if they don't bother me, I don't bother them. I don't like to take oral steroids so I avoid them until I don't have any other options, but fortunately for me, when polyps get too large, my doctor will either inject the large polyp(s) with a steroid, or snare them out in the office. For those of your that have recently read other posts about snaring polyps, my ENT told me last week when I saw him, that snaring polyps is an old-time procedure that was used before they had steroid sprays. He doesn't do this for many patients, but I'm glad he does it for me. Diane > > I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years > and have had asthma symptoms for the last 8 years. About two years ago, I had a severe > reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve > (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended > up in the emergency room again. This diagnosed the NSAID allergy and we began to put > all the pieces together and came up with Samters. > > I have been on Singulair for years, and to be honest, I don't notice a difference at all. The > nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a > little. My last surgery got rid of polyps for several weeks but at my check up appointment, > they were already growing back. > > Right now I am on another round of prednisone. Twenty five day taper. This is the 6th > round I have been on in 2008. This week I can smell and taste food! I worry about long > term effects. > > Now that we know what is wrong, were do we go from here? I have spent the morning > reading all the posts and have loads more information. Thank you all. > > Another question... how do you explain this to other people? It seems so complicated and > people look at me like I am crazy or over-reacting. No one seems to understand the > diminished quality of life. What wording do you use when people say " you have a cold... > again... you are so stopped up " I need an easy way to explain that I am not contagious > and just have Samters. Any ideas would be great. > > Thanks! I look forward to learning from all of you! > Christy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 26 year veteran here.... saline rinse RELIGEOUSLY 3 times a day! I recommend a Neti pot for this. Others use water piks, etc.. and remember, surgery begets surgery (6 here...) so avoid if at all possible. You are at the best place in the world for info on this condition. I also recommend avoiding benzoates, found in all pop EXCEPT 7-up.Good Luck!From: whitech@... <whitech@...>Subject: New here- My storysamters Date: Sunday, December 28, 2008, 10:43 AMI have recently been diagnosed with Samters. I have had two polyp surgeries in4 years and have had asthma symptoms for the last 8 years. About two years ago, I hada severe reaction to ibuprophen and ended up in the emergency room. Recently, I took anAleve (naprosyn) and had a severe reaction (couldn't breath, major congestion,etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we beganto put all the pieces together and came up with Samters.I have been on Singulair for years, and to be honest, I don't notice adifference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polypgrowth a little. My last surgery got rid of polyps for several weeks but at my check upappointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This isthe 6th round I have been on in 2008. This week I can smell and taste food! I worryabout long term effects.Now that we know what is wrong, were do we go from here? I have spent themorning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems socomplicated and people look at me like I am crazy or over-reacting. No one seems to understandthe diminished quality of life. What wording do you use when people say "youhave a cold... again... you are so stopped up" I need an easy way to explain that I amnot contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you!Christy------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Where do you live? From: whitechymail (DOT) com <whitechymail (DOT) com> Subject: New here- My story samters@groups .com Date: Sunday, December 28, 2008, 11:43 AM I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters. I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects. Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say "you have a cold... again... you are so stopped up" I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 I’m from Australia, the land ‘down under’ From: Garoutte [mailto:dkgarout@...] Sent: Tuesday, 30 December 2008 3:19 PM samters Subject: RE: New here- My story Where do you live? From: whitechymail (DOT) com <whitechymail (DOT) com> Subject: New here- My story samters@groups .com Date: Sunday, December 28, 2008, 11:43 AM I have recently been diagnosed with Samters. I have had two polyp surgeries in 4 years and have had asthma symptoms for the last 8 years. About two years ago, I had a severe reaction to ibuprophen and ended up in the emergency room. Recently, I took an Aleve (naprosyn) and had a severe reaction (couldn't breath, major congestion, etc.) and ended up in the emergency room again. This diagnosed the NSAID allergy and we began to put all the pieces together and came up with Samters. I have been on Singulair for years, and to be honest, I don't notice a difference at all. The nasal steriods (I have been on several due to pregnancy and nursing) slow polyp growth a little. My last surgery got rid of polyps for several weeks but at my check up appointment, they were already growing back. Right now I am on another round of prednisone. Twenty five day taper. This is the 6th round I have been on in 2008. This week I can smell and taste food! I worry about long term effects. Now that we know what is wrong, were do we go from here? I have spent the morning reading all the posts and have loads more information. Thank you all. Another question... how do you explain this to other people? It seems so complicated and people look at me like I am crazy or over-reacting. No one seems to understand the diminished quality of life. What wording do you use when people say " you have a cold... again... you are so stopped up " I need an easy way to explain that I am not contagious and just have Samters. Any ideas would be great. Thanks! I look forward to learning from all of you! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 I am in St. Louis, Missouri. > > > From: whitechymail (DOT) com <whitechymail (DOT) com> > > Subject: New here- My story > > samters@groups .com > > Date: Sunday, December 28, 2008, 11:43 AM > > > > I have recently been diagnosed with Samters. I have had two polyp > surgeries in 4 years > > and have had asthma symptoms for the last 8 years. About two years ago, I > had a severe > > reaction to ibuprophen and ended up in the emergency room. Recently, I took > an Aleve > > (naprosyn) and had a severe reaction (couldn't breath, major congestion, > etc.) and ended > > up in the emergency room again. This diagnosed the NSAID allergy and we > began to put > > all the pieces together and came up with Samters. > > > > I have been on Singulair for years, and to be honest, I don't notice a > difference at all. The > > nasal steriods (I have been on several due to pregnancy and nursing) slow > polyp growth a > > little. My last surgery got rid of polyps for several weeks but at my check > up appointment, > > they were already growing back. > > > > Right now I am on another round of prednisone. Twenty five day taper. This > is the 6th > > round I have been on in 2008. This week I can smell and taste food! I worry > about long > > term effects. > > > > Now that we know what is wrong, were do we go from here? I have spent the > morning > > reading all the posts and have loads more information. Thank you all. > > > > Another question... how do you explain this to other people? It seems so > complicated and > > people look at me like I am crazy or over-reacting. No one seems to > understand the > > diminished quality of life. What wording do you use when people say > " you have a cold... > > again... you are so stopped up " I need an easy way to explain that I > am not contagious > > and just have Samters. Any ideas would be great. > > > > Thanks! I look forward to learning from all of you! > > Christy > > > > > > > > > Â > > > > > > > Â > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Wow, small world! I am excited because I just found a link in the database that shows a doctor at St, Louis University who performs aspirin desense. Until now, I didn't know if it was going to be available to me. I will ask my ENT about it. > > > > > > From: whitechymail (DOT) com <whitechymail (DOT) com> > > > > Subject: New here- My story > > > > samters@groups .com > > > > Date: Sunday, December 28, 2008, 11:43 AM > > > > > > > > I have recently been diagnosed with Samters. I have had two polyp > > surgeries in 4 years > > > > and have had asthma symptoms for the last 8 years. About two years ago, I > > had a severe > > > > reaction to ibuprophen and ended up in the emergency room. Recently, I > took > > an Aleve > > > > (naprosyn) and had a severe reaction (couldn't breath, major congestion, > > etc.) and ended > > > > up in the emergency room again. This diagnosed the NSAID allergy and we > > began to put > > > > all the pieces together and came up with Samters. > > > > > > > > I have been on Singulair for years, and to be honest, I don't notice a > > difference at all. The > > > > nasal steriods (I have been on several due to pregnancy and nursing) slow > > polyp growth a > > > > little. My last surgery got rid of polyps for several weeks but at my > check > > up appointment, > > > > they were already growing back. > > > > > > > > Right now I am on another round of prednisone. Twenty five day taper. This > > is the 6th > > > > round I have been on in 2008. This week I can smell and taste food! I > worry > > about long > > > > term effects. > > > > > > > > Now that we know what is wrong, were do we go from here? I have spent the > > morning > > > > reading all the posts and have loads more information. Thank you all. > > > > > > > > Another question... how do you explain this to other people? It seems so > > complicated and > > > > people look at me like I am crazy or over-reacting. No one seems to > > understand the > > > > diminished quality of life. What wording do you use when people say > > " you have a cold... > > > > again... you are so stopped up " I need an easy way to explain that I > > am not contagious > > > > and just have Samters. Any ideas would be great. > > > > > > > > Thanks! I look forward to learning from all of you! > > > > Christy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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