Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Thank you so much for writing this long post. Is this flovent similar to flixonase nasules? I'm really pleased for you that you have found something that has significantly improved your health and sense of smell, and I hope that you will continue to stay well, without having to take vast amounts of predisolone or antibiotics. Please let us know how you are doing in a couple of months to see if this is still working for you. Has anyone else has a similar response? Regards, Beckycondry <ondry@...> wrote: My Samters is possibly an anomaly because I had anosmia, congestion, aspirin allergy, polyps, and plugged sinuses but no asthma symptoms. Initially, before the aspirin allergy appeared, we were treating the symptoms as allergy. The congestion got so bad that in February 2006 I had anterior & posterior ethmoidectomy, bilateral maxillary atrosomy, and bilateral polypectomy. This helped but did not eliminate the congestion and discharge. In July 2006 I was recovering from a rotator cuff repair and took 400 mg of naproxen in the evening for the pain - thought I was going to die. Luckily the next day I was seeing the doctor who was treating my nasal symptoms and mentioned this. He said, "oh, you have Samters". With that we had a diagnosis and proceeded to try various treatments. Large doses of prednisone (60 mg/day) would give me temporary relief but when I tapered off the symptoms would return. At first the large prednisone doses would give my some sense of smell and taste which disappeared when I tapered the dose. Later this effect was absent. I desensitized to aspirin and took 1300 mg daily for quite a long time with no benefit. More recently I was taking 325 mg aspirin daily and 20 mg of prednisone every other day but still needed phenyephrine nasal spray on occasion to open my nasal passages and had no drainage from my sinuses after irrigating. I'm a retired pharmacist, so my doc lets me try most everything if I think it might help. There was a post about using Flovent HFA 220 mcg (fluticasone propionate) as a nasal inhalant and I was willing to try. Using the Flovent with a baby bottle nipple with the end removed I started. Within 3 days my sinuses were showing some drainage after flushing. By day 14 the post flush drainage was normal. Day 18 I was detecting faint sense of smell and taste. Day 20 sense of smell and taste was better and continued to improve. On day 40 I reduced my prednisone from 20 mg every other day to 15 mg every other day. Day 47 reduced prednisone to 10 mg every other day. Day 55 reduced the prednisone to 5 mg. Smell and taste still very good - this is the longest period I have been able to say that since 2005. My current regimen is 1 puff in each nostril of Flovent HFA 220 mcg AM and PM, 325 mg aspirin, 5 mg prednisone, and nasal irrigation AM & PM. Today, day 56, I'm going to switch to Flovent HFA 110 mcg and see if the good results continue. If after a couple of weeks I can still smell and taste I intend to try to eliminate the oral prednisone entirely. Today my doc checked me and said that the right nostril and sinus were perfect with no polyps. The left nostril which had a small polyp at my last exam was also polyp free and had just a small amount of crusting (1+ on a scale of 1-10). I apologize for the long posting but it might help someone. My very special thanks to whomever posted the information about using Flovent (an oral inhalant) in the nose. Fo me it worked - so far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 No asthma does not mean you don't have Samter's ; a good subgroup of Samter's patients (including me) don't have asthma. Aspirin intolerance and sinonasal polyps are sufficient to characterize Samter's - or AERD as some now put it (I'm not going into any terminology debate). Glad to know local Fluticasone propionate works ! Have you calculated the prednisone equivalent of the amount of fluticasone that you deliver daily to your nose ? I have not had time to check if there is a) an available conversion rate to evaluate the pred equivalent, any risk of HPA axis suppression with Fluticasone. Since you have access to everything, I would recommend nebulized sodium cromoglycate (Lomudal), or even irrigating with it (start with low doses in saline), since most of your sinuses are open. You might consider that if you stop aspirin or want to use entirely topical treatments. DSCG takes a few days (weeks?) to reach full effect. Its effects add/complement that of glucocorticoids, which, as you know, have rebound effects (decongestants too). Also, since your sinuses are opened, you may drain them naturally after irrigation simply by hanging your head down ( " facing the floor " ) for 10-15 min, as you may already have noticed (and re-irrigate/re-drain to clean if necessary) You have not tried Montelukast or Zileuton, but both are systemic. Have you got any allergies that might justify desens ? Do antihistamines help (rebound effect likely though) ? Is the permanent discharge clear ? > > My Samters is possibly an anomaly because I had anosmia, congestion, aspirin allergy, polyps, and plugged sinuses but no asthma symptoms. Initially, before the aspirin allergy appeared, we were treating the symptoms as allergy. The congestion got so bad that in February 2006 I had anterior & posterior ethmoidectomy, bilateral maxillary atrosomy, and bilateral polypectomy. This helped but did not eliminate the congestion and discharge. In July 2006 I was recovering from a rotator cuff repair and took 400 mg of naproxen in the evening for the pain - thought I was going to die. Luckily the next day I was seeing the doctor who was treating my nasal symptoms and mentioned this. He said, " oh, you have Samters " . With that we had a diagnosis and proceeded to try various treatments. Large doses of prednisone (60 mg/day) would give me temporary relief but when I tapered off the symptoms would return. At first the large prednisone doses would give my some sense of smell and taste which disappeared when I tapered the dose. Later this effect was absent. I desensitized to aspirin and took 1300 mg daily for quite a long time with no benefit. More recently I was taking 325 mg aspirin daily and 20 mg of prednisone every other day but still needed phenyephrine nasal spray on occasion to open my nasal passages and had no drainage from my sinuses after irrigating. > > I'm a retired pharmacist, so my doc lets me try most everything if I think it might help. There was a post about using Flovent HFA 220 mcg (fluticasone propionate) as a nasal inhalant and I was willing to try. Using the Flovent with a baby bottle nipple with the end removed I started. Within 3 days my sinuses were showing some drainage after flushing. By day 14 the post flush drainage was normal. Day 18 I was detecting faint sense of smell and taste. Day 20 sense of smell and taste was better and continued to improve. On day 40 I reduced my prednisone from 20 mg every other day to 15 mg every other day. Day 47 reduced prednisone to 10 mg every other day. Day 55 reduced the prednisone to 5 mg. Smell and taste still very good - this is the longest period I have been able to say that since 2005. My current regimen is 1 puff in each nostril of Flovent HFA 220 mcg AM and PM, 325 mg aspirin, 5 mg prednisone, and nasal irrigation AM & PM. Today, day 56, I'm going to switch to Flovent HFA 110 mcg and see if the good results continue. If after a couple of weeks I can still smell and taste I intend to try to eliminate the oral prednisone entirely. > > Today my doc checked me and said that the right nostril and sinus were perfect with no polyps. The left nostril which had a small polyp at my last exam was also polyp free and had just a small amount of crusting (1+ on a scale of 1-10). > > I apologize for the long posting but it might help someone. My very special thanks to whomever posted the information about using Flovent (an oral inhalant) in the nose. Fo me it worked - so far. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I posted the info about Flovent in the nose and I'm glad it has helped you. I have been using it for several years, and it has really helped me. I've been battling this for 30+ years and the Flovent and Singulair combination has worked the best for the longest period of time of any of the medicines or surgeries I've had over the years. I still have to have polyps out from time-to-time, but they grow slower and can be somewhat tamed by the Flovent. At this point, if I can breathe through my nose and taste and smell most of the time,I'm happy. Enjoy the taste of your favorite foods and the smells of the holidays! Diane Florida > My Samters is possibly an anomaly because I had anosmia, congestion, aspirin allergy, polyps, and plugged sinuses but no asthma symptoms. Initially, before the aspirin allergy appeared, we were treating the symptoms as allergy. The congestion got so bad that in February 2006 I had anterior & posterior ethmoidectomy, bilateral maxillary atrosomy, and bilateral polypectomy. This helped but did not eliminate the congestion and discharge. In July 2006 I was recovering from a rotator cuff repair and took 400 mg of naproxen in the evening for the pain - thought I was going to die. Luckily the next day I was seeing the doctor who was treating my nasal symptoms and mentioned this. He said, " oh, you have Samters " . With that we had a diagnosis and proceeded to try various treatments. Large doses of prednisone (60 mg/day) would give me temporary relief but when I tapered off the symptoms would return. At first the large prednisone doses would give my some sense of > smell and taste which disappeared when I tapered the dose. Later this effect was absent. I desensitized to aspirin and took 1300 mg daily for quite a long time with no benefit. More recently I was taking 325 mg aspirin daily and 20 mg of prednisone every other day but still needed phenyephrine nasal spray on occasion to open my nasal passages and had no drainage from my sinuses after irrigating. > > I'm a retired pharmacist, so my doc lets me try most everything if I think it might help. There was a post about using Flovent HFA 220 mcg (fluticasone propionate) as a nasal inhalant and I was willing to try. Using the Flovent with a baby bottle nipple with the end removed I started. Within 3 days my sinuses were showing some drainage after flushing. By day 14 the post flush drainage was normal. Day 18 I was detecting faint sense of smell and taste. Day 20 sense of smell and taste was better and continued to improve. On day 40 I reduced my prednisone from 20 mg every other day to 15 mg every other day. Day 47 reduced prednisone to 10 mg every other day. Day 55 reduced the prednisone to 5 mg. Smell and taste still very good - this is the longest period I have been able to say that since 2005. My current regimen is 1 puff in each nostril of Flovent HFA 220 mcg AM and PM, 325 mg aspirin, 5 mg prednisone, and nasal irrigation AM & PM. Today, day 56, I'm going to > switch to Flovent HFA 110 mcg and see if the good results continue. If after a couple of weeks I can still smell and taste I intend to try to eliminate the oral prednisone entirely. > > Today my doc checked me and said that the right nostril and sinus were perfect with no polyps. The left nostril which had a small polyp at my last exam was also polyp free and had just a small amount of crusting (1+ on a scale of 1-10). > > I apologize for the long posting but it might help someone. My very special thanks to whomever posted the information about using Flovent (an oral inhalant) in the nose. Fo me it worked - so far. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 asfyso, Sorry to be so late replying. When I decreased the dosages 110 mcg Fluticasone instead of 220 mcg and decreased the prednisone the anosmia and some congestion returned. Made a stupid mistake by changing two parameters at the same time - very bad scientific approach. I have returned to 220 mcg q nare bid and 20 mg pred every other day. Showing some improvement but still no sense of smell yet. Did not find a fluticasone/prednisone equivalence but did find a reference saying the systemic effect of fluticasone from oral inhalation was minimal. At my age (80 next June) I don't worry too much about long term side effects. My annual eye exam has shown no increase in intraocular pressure or cataract formation. Tried desens for over a year with no improvement. When I decreased my dosage I had some sneezing and colored nasal discharge, began amoxicillin 500 mg tid and in 4 days the discharge turned to clear. Will now stay on the higher steroid dose plus the amoxicillin for at least ten days to see if things improve. Carl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Congratulations for being in such good ocular shape at your age ! > > asfyso, > Sorry to be so late replying. When I decreased the dosages 110 mcg Fluticasone instead of 220 mcg and decreased the prednisone the anosmia and some congestion returned. Made a stupid mistake by changing two parameters at the same time - very bad scientific approach. I have returned to 220 mcg q nare bid and 20 mg pred every other day. Showing some improvement but still no sense of smell yet. Did not find a fluticasone/prednisone equivalence but did find a reference saying the systemic effect of fluticasone from oral inhalation was minimal. At my age (80 next June) I don't worry too much about long term side effects. My annual eye exam has shown no increase in intraocular pressure or cataract formation. Tried desens for over a year with no improvement. When I decreased my dosage I had some sneezing and colored nasal discharge, began amoxicillin 500 mg tid and in 4 days the discharge turned to clear. Will now stay on the higher steroid dose plus the amoxicillin for at least ten days to see if things improve. > Carl > Quote Link to comment Share on other sites More sharing options...
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