Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Hi , I'm ok in that I am desens on a dose of 600mg aspirin a day - I take 2 adult aspirin in the morning just after breakfast. My asthma is much better - i still take my puffer twice a day but haven't had any attacks since desens. I can eat and drink almost what I like, within reason - I can drink a glass of red or white wine and only feel a little bit bunged up- not horriby reactive. I can eat all foods including raisins and tomatoes and other high salycilate foods no problems. My sinuses are still horrible in that they are constantly infected, but my polyps are tiny and haven't been a problem since desens. So while desens has taken away my scary moments, I am still sufferning with horrible sinuses, poor/no sense of smell and am still on all my meds. I was desens over a period of weeks (2 years ago); in America the desens is usually over an intensive period of days. I got desens on the NHS so feel very fortunate about not having to pay for this treatment and good care.. In fact, I am generally very grateful indeed for living in the UK and receiving all my meds for only just over £100 a year (plus taxes of course!). When are you going to be desens? Good luck! Becky From: <sarahwhitbread@...>samters Sent: Tue, 19 January, 2010 9:58:40Subject: Re: Samter's Triad Hi Becky,I'm down in Kent. What was the procedure like? I've chatted to people on various forums and most seem to be in America, but I think the dosage varies between countries at least. How are you feeling now?>> You definately are not alone - your story is very familiar. i too live in England and was desens to aspirin by Dr Nasser and his team in Addenbrokes Cambridge. I'm 39 and have had Samters for 10 years now, exactly. Where do you live? I live near Bath.> Becky> > > > > ____________ _________ _________ __> From: "sarahwhitbread@ ..." <sarahwhitbread@ ...>> samters@groups .com> Sent: Mon, 18 January, 2010 23:33:45> Subject: Samter's Triad> > Â > Hello All,> > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable.> > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it.> > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right.   From: Bannister <beckyb256@...>samters Sent: Tue, January 19, 2010 10:28:32 AMSubject: Re: Re: Samter's Triad  Hi , I'm ok in that I am desens on a dose of 600mg aspirin a day - I take 2 adult aspirin in the morning just after breakfast. My asthma is much better - i still take my puffer twice a day but haven't had any attacks since desens. I can eat and drink almost what I like, within reason - I can drink a glass of red or white wine and only feel a little bit bunged up- not horriby reactive. I can eat all foods including raisins and tomatoes and other high salycilate foods no problems. My sinuses are still horrible in that they are constantly infected, but my polyps are tiny and haven't been a problem since desens. So while desens has taken away my scary moments, I am still sufferning with horrible sinuses, poor/no sense of smell and am still on all my meds.  I was desens over a period of weeks (2 years ago); in America the desens is usually over an intensive period of days. I got desens on the NHS so feel very fortunate about not having to pay for this treatment and good care.. In fact, I am generally very grateful indeed for living in the UK and receiving all my meds for only just over £100 a year (plus taxes of course!). When are you going to be desens? Good luck! Becky From: <sarahwhitbread@ ymail.com>samters@groups .comSent: Tue, 19 January, 2010 9:58:40Subject: Re: Samter's Triad Hi Becky,I'm down in Kent. What was the procedure like? I've chatted to people on various forums and most seem to be in America, but I think the dosage varies between countries at least. How are you feeling now?>> You definately are not alone - your story is very familiar. i too live in England and was desens to aspirin by Dr Nasser and his team in Addenbrokes Cambridge. I'm 39 and have had Samters for 10 years now, exactly. Where do you live? I live near Bath.> Becky> > > > > ____________ _________ _________ __> From: "sarahwhitbread@ ..." <sarahwhitbread@ ...>> samters@groups .com> Sent: Mon, 18 January, 2010 23:33:45> Subject: Samter's Triad> >  > Hello All,> > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable.> > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it.> > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 - I'm disappointed to hear any doctor telling his patients that there is little weight with aspirin desensitization because it's really the only major thing that has helped alleviate the majority of my symptoms. Plus with little else besides steroids to help with this disease you would think they would be hopeful to use such a procedure to help his patient. Hopefully it will work well for you as it has for many of us and I applaud you for pushing forward because as we all know from this board - doctors know very little about this disease and it's really important for us as samters patients to be proactive in our own care. best of luck -BiancaFrom: Whitbread <sarahwhitbread@...>Subject: Re: Re: Samter's Triadsamters Date: Tuesday, January 19, 2010, 1:29 PM Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right. From: Bannister <beckyb256 (DOT) co.uk>samters@groups .comSent: Tue, January 19, 2010 10:28:32 AMSubject: Re: Re: Samter's Triad Hi , I'm ok in that I am desens on a dose of 600mg aspirin a day - I take 2 adult aspirin in the morning just after breakfast. My asthma is much better - i still take my puffer twice a day but haven't had any attacks since desens. I can eat and drink almost what I like, within reason - I can drink a glass of red or white wine and only feel a little bit bunged up- not horriby reactive. I can eat all foods including raisins and tomatoes and other high salycilate foods no problems. My sinuses are still horrible in that they are constantly infected, but my polyps are tiny and haven't been a problem since desens. So while desens has taken away my scary moments, I am still sufferning with horrible sinuses, poor/no sense of smell and am still on all my meds. I was desens over a period of weeks (2 years ago); in America the desens is usually over an intensive period of days. I got desens on the NHS so feel very fortunate about not having to pay for this treatment and good care.. In fact, I am generally very grateful indeed for living in the UK and receiving all my meds for only just over £100 a year (plus taxes of course!). When are you going to be desens? Good luck! Becky From: <sarahwhitbread@ ymail.com>samters@groups .comSent: Tue, 19 January, 2010 9:58:40Subject: Re: Samter's Triad Hi Becky,I'm down in Kent. What was the procedure like? I've chatted to people on various forums and most seem to be in America, but I think the dosage varies between countries at least. How are you feeling now?>> You definately are not alone - your story is very familiar. i too live in England and was desens to aspirin by Dr Nasser and his team in Addenbrokes Cambridge. I'm 39 and have had Samters for 10 years now, exactly. Where do you live? I live near Bath.> Becky> > > > > ____________ _________ _________ __> From: "sarahwhitbread@ ..." <sarahwhitbread@ ...>> samters@groups .com> Sent: Mon, 18 January, 2010 23:33:45> Subject: Samter's Triad> > Â > Hello All,> > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable.> > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it.> > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 I’ve had the same problem with several doctors over the years with not wanting to desensitize. I’ve yet to find one that’s willing to do it and that also includes ENT’s and Allergists. None of them seem inclined to go with it. From: Bianca F [mailto:bianca_f75@...] Sent: Wednesday, 20 January 2010 11:35 AM samters Subject: Re: Re: Samter's Triad - I'm disappointed to hear any doctor telling his patients that there is little weight with aspirin desensitization because it's really the only major thing that has helped alleviate the majority of my symptoms. Plus with little else besides steroids to help with this disease you would think they would be hopeful to use such a procedure to help his patient. Hopefully it will work well for you as it has for many of us and I applaud you for pushing forward because as we all know from this board - doctors know very little about this disease and it's really important for us as samters patients to be proactive in our own care. best of luck -Bianca From: Whitbread <sarahwhitbread@...> Subject: Re: Re: Samter's Triad samters Date: Tuesday, January 19, 2010, 1:29 PM Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right. From: Bannister <beckyb256 (DOT) co.uk> samters@groups .com Sent: Tue, January 19, 2010 10:28:32 AM Subject: Re: Re: Samter's Triad Hi , I'm ok in that I am desens on a dose of 600mg aspirin a day - I take 2 adult aspirin in the morning just after breakfast. My asthma is much better - i still take my puffer twice a day but haven't had any attacks since desens. I can eat and drink almost what I like, within reason - I can drink a glass of red or white wine and only feel a little bit bunged up- not horriby reactive. I can eat all foods including raisins and tomatoes and other high salycilate foods no problems. My sinuses are still horrible in that they are constantly infected, but my polyps are tiny and haven't been a problem since desens. So while desens has taken away my scary moments, I am still sufferning with horrible sinuses, poor/no sense of smell and am still on all my meds. I was desens over a period of weeks (2 years ago); in America the desens is usually over an intensive period of days. I got desens on the NHS so feel very fortunate about not having to pay for this treatment and good care.. In fact, I am generally very grateful indeed for living in the UK and receiving all my meds for only just over £100 a year (plus taxes of course!). When are you going to be desens? Good luck! Becky From: <sarahwhitbread@ ymail.com> samters@groups .com Sent: Tue, 19 January, 2010 9:58:40 Subject: Re: Samter's Triad Hi Becky, I'm down in Kent. What was the procedure like? I've chatted to people on various forums and most seem to be in America, but I think the dosage varies between countries at least. How are you feeling now? > > You definately are not alone - your story is very familiar. i too live in England and was desens to aspirin by Dr Nasser and his team in Addenbrokes Cambridge. I'm 39 and have had Samters for 10 years now, exactly. Where do you live? I live near Bath. > Becky > > > > > ____________ _________ _________ __ > From: " sarahwhitbread@ ... " <sarahwhitbread@ ....> > samters@groups ..com > Sent: Mon, 18 January, 2010 23:33:45 > Subject: Samter's Triad > > Â > Hello All, > > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable. > > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure.. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it. > > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all. > E-mail message checked by Spyware Doctor (6.1.0.447) Database version: 6.14160 http://www.pctools.com/spyware-doctor-antivirus/ E-mail message checked by Spyware Doctor (6.1.0.447)Database version: 6.14160http://www.pctools.com/spyware-doctor-antivirus/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 hi , GP's just don't understand aspirin desensitisation...and even ENT's too. But for those who have ahd it done, and for the specialists who do it, significant improvements can be seen. I am so lucky that my own father is an Immunologist, and 2 of his colleagues (Dr Nasser in addenbrokes and Dr Scadding in London) for years told him they would be very happy to desens me..but it literally took me 7 years of courage before i went ahead with it...and 7 years of realising this illness was here to stay! I do wish i had done it sooner, but my fear of all medical intervention held me off. It's definately worth a try though. Let us know how you get on with it all, and the name of your Consultant Immunologist too. I think you may have Dr Glenys Scadding. Becky From: Whitbread <sarahwhitbread@...>samters Sent: Tue, 19 January, 2010 22:29:42Subject: Re: Re: Samter's Triad Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right. From: Bannister <beckyb256 (DOT) co.uk>samters@groups .comSent: Tue, January 19, 2010 10:28:32 AMSubject: Re: Re: Samter's Triad Hi , I'm ok in that I am desens on a dose of 600mg aspirin a day - I take 2 adult aspirin in the morning just after breakfast. My asthma is much better - i still take my puffer twice a day but haven't had any attacks since desens. I can eat and drink almost what I like, within reason - I can drink a glass of red or white wine and only feel a little bit bunged up- not horriby reactive. I can eat all foods including raisins and tomatoes and other high salycilate foods no problems. My sinuses are still horrible in that they are constantly infected, but my polyps are tiny and haven't been a problem since desens. So while desens has taken away my scary moments, I am still sufferning with horrible sinuses, poor/no sense of smell and am still on all my meds. I was desens over a period of weeks (2 years ago); in America the desens is usually over an intensive period of days. I got desens on the NHS so feel very fortunate about not having to pay for this treatment and good care.. In fact, I am generally very grateful indeed for living in the UK and receiving all my meds for only just over £100 a year (plus taxes of course!). When are you going to be desens? Good luck! Becky From: <sarahwhitbread@ ymail.com>samters@groups .comSent: Tue, 19 January, 2010 9:58:40Subject: Re: Samter's Triad Hi Becky,I'm down in Kent. What was the procedure like? I've chatted to people on various forums and most seem to be in America, but I think the dosage varies between countries at least. How are you feeling now?>> You definately are not alone - your story is very familiar. i too live in England and was desens to aspirin by Dr Nasser and his team in Addenbrokes Cambridge. I'm 39 and have had Samters for 10 years now, exactly. Where do you live? I live near Bath.> Becky> > > > > ____________ _________ _________ __> From: "sarahwhitbread@ ..." <sarahwhitbread@ ...>> samters@groups .com> Sent: Mon, 18 January, 2010 23:33:45> Subject: Samter's Triad> > Â > Hello All,> > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable.> > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it.> > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Hi & BeckyMike here from Suffolk.I am seeing Dr Scadding on 27th Jan - she is based at the Royal Free in London - I have had a previous referral to her soon after I had my first FESS surgery in Ipswich where I was diagnosed with Samters. I've had a half decent 18 months since the surgery but the polyps are back and I have had a pretty rough time with infection over the past 6 to 8 weeks. However I have seen my GP today and for the first time in 2 years I have some clear of MRSA swabs in my hooter. the past 6 weeks of antibiotics have done something!I'll have to see what Dr Scadding says next week but if I need another FESS I will certainly be pushing for desense as a follow up. I understand Dr Scadding uses a liquid aspirin desense treatment putting the drops directly into the nose rather than ingesting aspirin.I'll let you know how I get on.I think there are about 6 or 7 of us Samterians here in the UK now on this site. Not a club I wanted to be a member of but the shared knowledge and experiences is a great comfort to an otherwise misunderstood and undiagnosed community.Best wishesMikesamters From: beckyb256@...Date: Wed, 20 Jan 2010 08:25:21 +0000Subject: Re: Re: Samter's Triad hi , GP's just don't understand aspirin desensitisation...and even ENT's too. But for those who have ahd it done, and for the specialists who do it, significant improvements can be seen. I am so lucky that my own father is an Immunologist, and 2 of his colleagues (Dr Nasser in addenbrokes and Dr Scadding in London) for years told him they would be very happy to desens me..but it literally took me 7 years of courage before i went ahead with it...and 7 years of realising this illness was here to stay! I do wish i had done it sooner, but my fear of all medical intervention held me off. It's definately worth a try though. Let us know how you get on with it all, and the name of your Consultant Immunologist too. I think you may have Dr Glenys Scadding. Becky From: Whitbread <sarahwhitbreadymail>samters Sent: Tue, 19 January, 2010 22:29:42Subject: Re: Re: Samter's Triad Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right. ng Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use . We want to hear all your funny, exciting and crazy Hotmail stories. Tell us now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Mike, I am delighted for you that you are now MRSA free -which antibiotics helped enable that? Best of luck with your next FESS and also with being desensitised..at long last. It'll be interesting to hear how the desens with the liquid aspirin works out. Do you continue to use liquid aspirin in your nose, or do you move onto taking the oral stuff? Becky From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Wed, 20 January, 2010 11:36:37Subject: RE: Re: Samter's Triad Hi & Becky Mike here from Suffolk. I am seeing Dr Scadding on 27th Jan - she is based at the Royal Free in London - I have had a previous referral to her soon after I had my first FESS surgery in Ipswich where I was diagnosed with Samters. I've had a half decent 18 months since the surgery but the polyps are back and I have had a pretty rough time with infection over the past 6 to 8 weeks. However I have seen my GP today and for the first time in 2 years I have some clear of MRSA swabs in my hooter. the past 6 weeks of antibiotics have done something! I'll have to see what Dr Scadding says next week but if I need another FESS I will certainly be pushing for desense as a follow up. I understand Dr Scadding uses a liquid aspirin desense treatment putting the drops directly into the nose rather than ingesting aspirin. I'll let you know how I get on. I think there are about 6 or 7 of us Samterians here in the UK now on this site. Not a club I wanted to be a member of but the shared knowledge and experiences is a great comfort to an otherwise misunderstood and undiagnosed community. Best wishes Mike samters@groups .comFrom: beckyb256 (DOT) co.ukDate: Wed, 20 Jan 2010 08:25:21 +0000Subject: Re: Re: Samter's Triad hi , GP's just don't understand aspirin desensitisation. ..and even ENT's too. But for those who have ahd it done, and for the specialists who do it, significant improvements can be seen. I am so lucky that my own father is an Immunologist, and 2 of his colleagues (Dr Nasser in addenbrokes and Dr Scadding in London) for years told him they would be very happy to desens me..but it literally took me 7 years of courage before i went ahead with it...and 7 years of realising this illness was here to stay! I do wish i had done it sooner, but my fear of all medical intervention held me off. It's definately worth a try though. Let us know how you get on with it all, and the name of your Consultant Immunologist too. I think you may have Dr Glenys Scadding. Becky From: Whitbread <sarahwhitbread@ ymail.com>samters@groups .comSent: Tue, 19 January, 2010 22:29:42Subject: Re: Re: Samter's Triad Hello Becky, I'm only just being referred by my doctor to Guys and I'm told by an allergy specialist that they desensitise there, so I'm hoping. The doctor initially dismissed the idea, saying that it has little weight and doesn't think it will work, but I've pushed for it. So it'll be a few months yet at least, I have no idea how long the waiting list might be. You sound as if you've improved, I think perhaps so much of recovery is about listening to your own body and doing what you feel is right. ng Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .. We want to hear all your funny, exciting and crazy Hotmail stories. Tell us now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 > I¹ve had the same problem with several doctors over the years with not wanting > to desensitize. I¹ve yet to find one that¹s willing to do it and that also > includes ENT¹s and Allergists. None of them seem inclined to go with it. > I believe that if you understand your level of (in)tolerance, and can take the necessary precautions, then you can do it yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 i tried to desensitize myself and was miserable for 4 days. If you do it be prepared with someone there with you to take you to er. I took a quarter of a baby aspirin and still reacted. I wouldn't recommend itBiancaFrom: q2 <kenwest@...>Subject: Re: Re: Samter's Triadsamters Date: Wednesday, January 20, 2010, 5:14 AM > I¹ve had the same problem with several doctors over the years with not wanting > to desensitize. I¹ve yet to find one that¹s willing to do it and that also > includes ENT¹s and Allergists. None of them seem inclined to go with it. > I believe that if you understand your level of (in)tolerance, and can take the necessary precautions, then you can do it yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I also would not recomend it since it is dangerous and should be done at a doctor but if I personally would do it again then I would use a 300mg Aspirin which desolves in e.g. 30ml of water together with a small syringe to be able to start with calculated clear qtys as e.g. 1mg to start of with and increase very slowly on a daily base.--- Bianca F <bianca_f75@...> schrieb am Mi, 20.1.2010:Von: Bianca F <bianca_f75@...>Betreff: Re: Re: Samter's TriadAn: samters Datum: Mittwoch, 20. Januar 2010, 17:35 i tried to desensitize myself and was miserable for 4 days. If you do it be prepared with someone there with you to take you to er. I took a quarter of a baby aspirin and still reacted. I wouldn't recommend itBiancaFrom: q2 <kenwest@echo- on.net>Subject: Re: Re: Samter's Triadsamters@groups .comDate: Wednesday, January 20, 2010, 5:14 AM > I¹ve had the same problem with several doctors over the years with not wanting > to desensitize. I¹ve yet to find one that¹s willing to do it and that also > includes ENT¹s and Allergists. None of them seem inclined to go with it. > I believe that if you understand your level of (in)tolerance, and can take the necessary precautions, then you can do it yourself. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 When I was desensitized they had me on high doses of steroids, singulair, and had a nebulizer (?) handy (don't know what was in it, but I needed it to breathe). Maybe an inhaler would do -- On Jan 20, 2010, at 5:52 PM, Nils Bischoff wrote: I also would not recomend it since it is dangerous and should be done at a doctor but if I personally would do it again then I would use a 300mg Aspirin which desolves in e.g. 30ml of water together with a small syringe to be able to start with calculated clear qtys as e.g. 1mg to start of with and increase very slowly on a daily base.--- Bianca F <bianca_f75 > schrieb am Mi, 20.1.2010:Von: Bianca F <bianca_f75 >Betreff: Re: Re: Samter's TriadAn: samters Datum: Mittwoch, 20. Januar 2010, 17:35 i tried to desensitize myself and was miserable for 4 days. If you do it be prepared with someone there with you to take you to er. I took a quarter of a baby aspirin and still reacted. I wouldn't recommend itBiancaFrom: q2 <kenwest@echo- on.net>Subject: Re: Re: Samter's Triadsamters@groups .comDate: Wednesday, January 20, 2010, 5:14 AM > I¹ve had the same problem with several doctors over the years with not wanting > to desensitize. I¹ve yet to find one that¹s willing to do it and that also > includes ENT¹s and Allergists. None of them seem inclined to go with it. > I believe that if you understand your level of (in)tolerance, and can take the necessary precautions, then you can do it yourself. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Thank you Asfy. I suspect you are right and I am overdue for more sinus surgery, I have put this off for the last couple of months as I'm anxious to get Prof. Corrigan's opinion and wanted to see him whilst I'm at my worst, but I'm seeing the ENT surgeon who would be performing the surgery in March and I expect to be back on the waiting list. I'm sticking witht the diet (it's day 24) and was feeling some improvement I thought, but now am on a fresh course of amoxycillin as have picked up a chest infection (from spending an evening with smokers). I'll give the diet another month or so and see if there is any real improvement.Incidentally, does anyone report feeling worse with antibiotics? My chest is certainly clearing but I'm experiencing more pressure in the nose than before. Just a thought. Topical furosemide is definitely an option I didn't know of though, and I'll be certain to discuss it with my doctor.  From: asfy <asfyso@...>samters Sent: Sun, January 24, 2010 2:23:05 PMSubject: Re: Samter's Triad  Hello ,Cases of bone deviation due to polyp pressure have been reported in the literature, so yes, it does happen, and it clearly means that the polyps are overdue for surgery, otherwise more polyp growth will result in more deviation, which may become permanent with time. The consequences of bone deviation depend on where the polyps are and which bone(s) move, but as a matter of principle, it is really better to avoid letting it continue.There are some drugs that may work well on polyps : steroids, leukotriene inhibitors such as those you mentioned, topical furosemide, fish oils, antihistamines, etc. but, in general, there is no magical drug that quickly shrinks the polyps in everyone regardless of their particular situation.This is not to mean that quick shrinking of polyps is something that never happens ; on the contrary, it does happen in specific cases, for instance I believe we have reports even here of sufferers who are allergic to gluten, lactose, etc and suddenly realized it and stopped eating the allergen in question, and saw their polyps shrink fast.So, quick shrinking of polyps is generally observed in patients who either are very good responders to some drugs, or have specific and powerful triggers, identify them, and manage to get rid of them. In your case, if a couple of months of salicylate-free diet yields no improvement, then there is probably no point in continuing - though significant quantities (which may mean small doses, depending on every individual) of salicylates are to be avoided permanently.Remember that there may several elements that can trigger polyp growth, either individually or in combination, e.g. :- exposure to COX-inhibitors such as aspirin, salicylates, etc,- food allergies or intolerances,- environmental allergies or toxics,- sinus infections,- etc.so even if you get rid of one, there may be others involved that will perpetuate the congestion.If your sinuses are permanently congested, you are also likely to experience several sinusitis every year, and in turn this consolidates the polyp growth. So, there is some sort of vicious circle between all of these causes. Depending on your scans and symptoms, it is likely that Dr. Corrigan would envision the possibility of endoscopic sinus surgery (FESS) to clean everything out and start on fresh grounds.Do note that irrigation (preferably with lukewarm saline) has been of help to many members of this group, but blocking polyps prevent proper irrigation, so here again clearing out the polyps is a prerequisite.Good luck, and don't hesitate to let everyone here know how things evolve.-----------Eur Arch Otorhinolaryngol. 2006 Aug;263(8):767- 71. Epub 2006 May 10.Topical furosemide versus oral steroid in preoperative management of nasal polyposis.Kroflic B, Coer A, Baudoin T, Kalogjera L.Otorhinolaryngology /Head and Neck Surgery Department, General Hospital, Celje, Slovenia.The efficacy of topical nasal furosemide treatment has been shown in the protection of nasal polyp recurrence. The aim of the study was to compare the effect of oral steroid, as standard preoperative treatment, and inhaled furosemide, as alternative treatment, for 7 days preoperatively in terms of subjective improvement of nasal symptoms, polyp size reduction, inflammation in the polyp tissue, and intraoperative blood loss. A group of 40 patients with nasal polyposis entered the study and they were randomly allocated to 7-day preoperative treatment with either oral methylprednisolon (1 mg/kg/day) or topical furosemide by inhalation (6.6 mmol/l solution). Subjective scores of rhinosinusitis symptoms, polyp scores at endoscopy, and biopsy of the most superficial polyp were taken at inclusion. All procedures were repeated on day 7. Intraoperative blood loss was estimated (scores 0-10) by the surgeon at the operation. Eosinophils, mastocytes, and oedema were quantified by histomorphometry. Subjective symptoms and endoscopy scores did not differ significantly between the groups after the treatment although improvement of olfaction was insignificantly better in the steroid group. Steroid treatment significantly reduced eosinophil count, with no effect on mastocytes and oedema. Furosemide treatment did not affect inflammatory cells count significantly, but it has significantly reduced oedema in previously unoperated patients. No difference in intraoperative bleeding was observed between the groups.Arch Otolaryngol Head Neck Surg. 2003 Jun;129(6):656- 9.Treatment of recurrent chronic hyperplastic sinusitis with nasal polyposis.Passà li D, Bernstein JM, Passali FM, Damiani V, Passà li GC, Bellussi L.ENT Department, University of Siena Medical School, Siena, Italy. Passaliunisi (DOT) itOBJECTIVE: To demonstrate the long-term efficacy of intranasal furosemide, an inhibitor of the sodium chloride cotransporter channel at the basolateral surface of the respiratory epithelial cell, vs no therapeutic intervention vs intranasal mometasone furoate, a corticosteroid, in preventing relapses of chronic hyperplastic sinusitis with nasal polyposis. DESIGN: Randomized prospective controlled study. Patients were examined every 6 months during follow-up (range, 1-9 years). PATIENTS: One hundred seventy patients with bilateral obstructive or minimally obstructive chronic hyperplastic sinusitis with nasal polyposis. INTERVENTION: All patients were surgically treated in the ENT Department, University of Siena Medical School. One month after surgery, group 1 patients (n = 97) started treatment with intranasal furosemide, group 2 (n = 40) received no therapeutic treatment, and group 3 (n = 33) were treated with mometasone. MAIN OUTCOME MEASURES: Clinical and instrumental evaluation of postoperative outcomes. RESULTS: Seventeen (17.5%) of 97 patients in group 1, 12 (30.0%) of 40 patients in group 2, and 8 (24.2%) of 33 patients in group 3 experienced nasal polyposis relapses. We noted a prevalence of early-stage relapse in patients treated with furosemide or mometasone, whereas patients who did not receive any treatment experienced more severe grades of chronic hyperplastic sinusitis with nasal polyposis (P<.005). CONCLUSION: Use of intranasal furosemide represents a valid therapeutic treatment in the prevention of chronic hyperplastic sinusitis with nasal polyposis.>> Hello All,> > I'm a 31 year old woman from England and I've been suffering with Samter's Triad for probably 10 years although it was only diagnosed a couple of years ago. I'm new to the forum and eager to find out as much as I can about this condition, I'm sure you all know how I feel - some days it can become unbearable.> > I have had two operations to remove polyps, the most recent two years ago, but within six weeks the polyps were returning and I have been congested since. I experience the same sinus pressure, headaches, and restless nights when my nose will contstantly stream. The most frightening experience is that my nose has widened in the last few months, due I'm told by my ENT specialist by the constant pressure. Has anyone else had this? Short bursts of prednisolone give some respite for a week or so, but I am loathe to use them more than twice a year, as I've been told they can affect bone density. > > As the years have passed I've felt more allergic, and now count dustmites, cat and dog allergies alongside the sensitivity to aspirin. I experienced wheeziness for years when drinking red wine, before realising the connection with salicylates, I now tend to avoid all alcohol. I am on the salicylate free diet and not feeling the benefits as yet, but I've been told it could take a month to clear my system, after reading some positive posts on here regarding the diet I'm feeling more optimistic about it.> > I tried Singulair but thought it caused some tinnitus, has anyone else experienced this? I am now taking Accolate, which was a Godsend for the first month, but slowly the polyps returned, but I will stick with it. Zyflo is not available over here in England. Thankfully, the polyps do not tend to affect my asthma too much, although I have post-nasal drip. I have been using the Seretide inhaler for a few years now and that is amazing, I now hardly ever have to use ventolin, despite the congestion. > > I have been referred to Professor Corrigan at Guy's in London, and am hoping for desensitisation, some of your stories have given me renewed optimism. > > I have seen menitoned Pulmicort Respules but I can't find enough information on how they could be used to treat the sinuses - can anyone tell me more on this? > > It's good not to feel like I'm alone, if anyone has any advice I'd be grateful. Best wishes to all.> Quote Link to comment Share on other sites More sharing options...
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