Guest guest Posted May 3, 2011 Report Share Posted May 3, 2011 Hello all. Im new to this but are people on this site mostly from the states, Im in the UK..Many thanks Jay..From: R <myigloo2@...>Subject: Finding what workssamters Date: Tuesday, 3 May, 2011, 18:26 I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. I wish the best of luck to everyone with this maddening and frustrating disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2011 Report Share Posted May 3, 2011 Jay....I think most of us live in the US..........but a significant amount are from UK too. We can learn much from both sides of the Atlantic. I actually grew up in UK but live in the USA now. Join in. Finding what works samters Date: Tuesday, 3 May, 2011, 18:26 I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. I wish the best of luck to everyone with this maddening and frustrating disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2011 Report Share Posted May 3, 2011 I live in the UK and would love to talk to similar Samter suffers in UK for any advise and experiences. I am awaiting ENT appointment re polpys and to see an immunologyist re aspirin desense. Very frustrated by it all. Grateful for any help or ideas. Helen > > > From: R <myigloo2@...> > Subject: Finding what works > samters > Date: Tuesday, 3 May, 2011, 18:26 > > > > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. > > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. > > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. > > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. > > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. > > I wish the best of luck to everyone with this maddening and frustrating disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Welcome to the group, Jay. Take some time to comb through the archive, files and links, where you will find a lot of useful information on polyps, drugs, surgeries, aspirin desensitization, etc. Since you are planning to undergo a wide " cleaning " surgery, it will help you make the most of it and hopefully prevent or delay the return of polyps after that. Regarding ears, members have recently posted good articles (by Pr. Caversacchio) in the files section about hearing and Samter's. In particular, the idea of pouring steroids down the ear tube to alleviate inflammation was evoked in one article, and this may provide a basis for discussion with your ENT. What do you mean by " a low aspirin score " ? Does that mean you do not react to aspirin ? How do you know you have Samter's - have you reacted to NSAIDS in the past? Also, regarding newspaper print, is it the ink or the paper (ie bleaching agents, wood pulp) that makes you react ? Have you run full allergy tests and envisioned allergy desensitization ? Do you irrigate with saline ? I am sure you will find other questions you will want to investigate after reading some posts in the archive. > > > > > > > > > From: R <myigloo2@> > > > Subject: Finding what works > > > samters > > > Date: Tuesday, 3 May, 2011, 18:26 > > > > > > > > > > > > > > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. > > > > > > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. > > > > > > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. > > > > > > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. > > > > > > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > > > > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > > > > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. > > > > > > I wish the best of luck to everyone with this maddening and frustrating disease. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. > > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. > > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. > > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. > > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. > > I wish the best of luck to everyone with this maddening and frustrating disease. > You are absolutely right, everyone is different and what works for one person, may or may not work for another patient. After three surgeries, I am polyp free for three years now and have my sense of smell back. I take two Singulair pills daily, one Loratadine, two puffs of nasonex, and two inhales of Asmanex. Since I recently turned 65, I am now on Medicare. With Asmanex being a T3 drug and Singulair being a T@, AND limited to one pill a day, I started looking for alternatives. Basically I found out that ONLINE, I can buy my double dose of Singulair 10mg(180 pills) for $63.54 and a 3 month supply of Asmanex for $180. Naturally I could go with our fine government Medicare plan and pay $135 for 90 Singular pills, and full retail for the other 90 pills so the online cost of $63.54 is a significant savings. The same goes for Asmanex. I can get a three month supply for $255 from Medicare or buy it online for $180. Prior to Medicare, my insurance covered the cost of these drugs with a much lower co-pay but now that I am receiving Medicare I find it is a waste of money to use the government drug insurance plan. I guess I should mention that after I received my drugs online, I did take them to my allergist to get his approval that I was taking the EXACT same medications that I was receiving from MEDCO. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 , I sent you a private email with the link to the company to buy Singulair at the prices I posted in my previous post. Ron > > > > I believe that each and every Samter's patient is different and it is really a matter of trial and error as to what works for each individual. I have had the experience that doctors want to treat all patients the same and I have had to take things into my own hands along with what the doctors have told me to do and find all the right things that work for me. > > > > I have been off aspirin and prednisone since February and am doing great. I am still on Zyflo CR, Nasonex, Singulair, and Dulara. > > > > I have added sitting in a far infrared sauna daily to clean out toxins in my body, I do light yoga, I visit a chiropractor to help blood flow throughout my body and I take a variety of vitamins and minerals. I also sit in a bath of hot water and epsom salts a couple of times of week to sweat out toxins. These seem to work for me but not one of my physicians recommended any of these. It was up to me to try these things. I figured I needed to work in conjunction with my doctors if I wanted to get any real solutions and relief. > > > > Not being a very patient person, I had to force myself to take time with each of these things to see if they really did work. Results did not happen in the first few days. How long will all of this continue to work for me????that's the million dollar questions but for now it all seems good. > > > > I encourage everyone with the pain in the butt disease to try as many things as possible to find what works for you. It has taken me years of reading, researching, getting PO'd at doctors and finding new ones etc..... > > > > On another note: As many of us know Zyflo CR is very, very expensive. I happen to be one without insurance so it was imperative that I find a way to get assistance with this med. There is a program, Conerstone Cares, that has an application you can fill out and get assistance with this med. > > > > You can also do the same for Singulair and Nasonex, I just can't recall the name of that program at the moment. > > > > I wish the best of luck to everyone with this maddening and frustrating disease. > > > > You are absolutely right, everyone is different and what works for one person, may or may not work for another patient. After three surgeries, I am polyp free for three years now and have my sense of smell back. I take two Singulair pills daily, one Loratadine, two puffs of nasonex, and two inhales of Asmanex. > Since I recently turned 65, I am now on Medicare. With Asmanex being a T3 drug and Singulair being a T@, AND limited to one pill a day, I started looking for alternatives. Basically I found out that ONLINE, I can buy my double dose of Singulair 10mg(180 pills) for $63.54 and a 3 month supply of Asmanex for $180. > Naturally I could go with our fine government Medicare plan and pay $135 for 90 Singular pills, and full retail for the other 90 pills so the online cost of $63.54 is a significant savings. The same goes for Asmanex. I can get a three month supply for $255 from Medicare or buy it online for $180. > Prior to Medicare, my insurance covered the cost of these drugs with a much lower co-pay but now that I am receiving Medicare I find it is a waste of money to use the government drug insurance plan. > I guess I should mention that after I received my drugs online, I did take them to my allergist to get his approval that I was taking the EXACT same medications that I was receiving from MEDCO. > Quote Link to comment Share on other sites More sharing options...
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