Re: Hypereosinophilic Syndrome

[Guest guest]

I was diagnosed last month with eosinophilic esophagitus (sp?). Sometimes my throat would just close and no food or even saliva would go down. Usually for about 10 minutes but sometimes longer.My doctor explained that since I was on prednisone so much, my body doesn't know how to make it on it's own. If you take prednisone, you need to taper the dose at the end, not just stop, to give your body a chance to kick in again. Because I've been doing a "burst" described by others here, he says the eosinophils just run rampant when I stop taking it orally. CrusherFrom: andra Rubin <arub4378@...>samters Sent: Thursday, July 7, 2011 5:46 AMSubject: Hypereosinophilic Syndrome

Hi everyone,

Billie's email about CSS made me think about my own situation. Long story short I've been diagnosed with Samters for 3 years and have had 3 sinus surgeries to remove polyps. Each time I have surgery, pathology reports show that I have a high level of eosinophils in my sinuses. Last month I had to be hospitalized because of abdominal issues-- sure enough, they found high levels of eosinophils in my esophagus, stomach, and small and large intestines. In the interim they've put me on an oral steroid and pulled me off the aspirin. Has anyone been diagnosed with or evaluated for hypereosinophilic syndrome as a differential diagnosis?

From: samters [mailto:samters ] On Behalf Of billie fordSent: Wednesday, July 06, 2011 10:25 PMsamters Subject: Re: Frustrated and feeling hopeless

Mindi,Your story sounds very familiar. I started with the Samters when I was 25 and suffered horribly for years, even with high doses of prednisone. Please know there are others who are suffering like you and you are not alone!I've seen different posts about what works for others and none of it ever worked for me, and aspirin desens. was not an option for me. What finally got me on the right track was being tested for Churgg Strauss. The rheumatologist did not think I had it, but did blood tests anyway, and sure enough.... I was on Cytoxin for a year, then Imuran for 2 years. I have now been steroid free for 4 years, and only occassionally even need the rescue inhaler. Singulair and Advair keep things under control. And no polyps since 1996!!This may not be the case with you, but one thing I've learned with this stuff is to not give up (I'm now 62). If this dr doesn't help you, get a different one. If that one doesn't help, get another one. It's your health and you know your body. See a rheumatologist to rule out vasculitis like CSS, see a cardiologist to rule out heart trouble (symptoms are often the same). See anyone you need to and keep trying!Most of all, don't give up! Allow yourself to grieve for the loss of your health, take a day or two now and then to wallow in it and enjoy the frustration, then get back to the business of what your life is. Your family needs it and so do you!!!OK, off my soapbox. Take care of yourself.

Billie Ford

msbfford@...

""Real power is the ability to pause between stimulus and response, and in that pause, choose." Rollo May

From: mindiestrella <mindiestrella@...>Subject: Frustrated and feeling hopelesssamters Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler. I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it ) I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

This is all a really complicated medical issue, and even doctors are divided on causes and treatments. The rheumy I saw (who didn't think I had CSS) always blamed my symtoms on the prednisone. Even while the other treatments were working, he kept blaming the pred. I think the immunosuppressents took over to treat symptoms while tapering off pred, and stopped the cycle of immune response that triggered everything in the first place.Billie Ford msbfford@... ""Real power is the ability to pause between stimulus

and response, and in that pause, choose." Rollo May

From: mindiestrella <mindiestrella@...>Subject: Frustrated and feeling hopelesssamters Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler. I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it ) I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg basis.Im not 100% in the clear. I still do get congested when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

BiancaGiving up coffee helped you? Please share moreI drink a venti hazelnut sugar free latte everyday Sent from my iPhoneOn Jul 8, 2011, at 1:02 PM, Bianca <bianca_f75@...> wrote:

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg basis.Im not 100% in the clear. I still do get congested when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date:

[Guest guest]

Hi there, yes before i was desensitized the forum had mentioned the high level of salicylates in coffee (or caffeinie) I was drinking a mocha everyday to combat the effects of not being able to sleep. I had the constant sneezing, nasal drip etc...when i stopped the coffee i noticed an initial improvement after about 5 days. I know we all have the feeling of when a flare up is coming on and for the first time in years......i could feel my reactions calming. Now that im desensitized i drink coffee again but this breakythrough for me just really gave me hope that i could combat these reactions with drugs and change in diet. There should be some threads on the coffee issuenon this forum if you search for it. Not everyone has that reaction to caffinated coffee but I was one that it helped a lot to cut it out.Bianca On Jul 9, 2011, at 7:06 AM, aio_cps@... wrote:

BiancaGiving up coffee helped you? Please share moreI drink a venti hazelnut sugar free latte everyday Sent from my iPhoneOn Jul 8, 2011, at 1:02 PM, Bianca <bianca_f75@...> wrote:

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg basis.Im not 100% in the clear. I still do get congested when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date:

[Guest guest]

Now that you are desensitized do you have any reaction to coffee? From what the doctors say, you shouldn't, but everyone is different.On Jul 9, 2011, at 11:09 AM, Bianca wrote:

Hi there, yes before i was desensitized the forum had mentioned the high level of salicylates in coffee (or caffeinie) I was drinking a mocha everyday to combat the effects of not being able to sleep. I had the constant sneezing, nasal drip etc...when i stopped the coffee i noticed an initial improvement after about 5 days. I know we all have the feeling of when a flare up is coming on and for the first time in years......i could feel my reactions calming. Now that im desensitized i drink coffee again but this breakythrough for me just really gave me hope that i could combat these reactions with drugs and change in diet. There should be some threads on the coffee issuenon this forum if you search for it. Not everyone has that reaction to caffinated coffee but I was one that it helped a lot to cut it out.Bianca On Jul 9, 2011, at 7:06 AM, aio_cps@... wrote:

BiancaGiving up coffee helped you? Please share moreI drink a venti hazelnut sugar free latte everyday Sent from my iPhoneOn Jul 8, 2011, at 1:02 PM, Bianca <bianca_f75@...> wrote:

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg basis.Im not 100% in the clear. I still do get congested

when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same

boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Frustrated and feeling hopeless

samters

Date:

[Guest guest]

No i no longer have any reaction to coffee. Aspirin fixed that. Thank GodBianca On Jul 9, 2011, at 12:47 PM, joan harvey <thomyris7@...> wrote:

Now that you are desensitized do you have any reaction to coffee? From what the doctors say, you shouldn't, but everyone is different.On Jul 9, 2011, at 11:09 AM, Bianca wrote:

Hi there, yes before i was desensitized the forum had mentioned the high level of salicylates in coffee (or caffeinie) I was drinking a mocha everyday to combat the effects of not being able to sleep. I had the constant sneezing, nasal drip etc...when i stopped the coffee i noticed an initial improvement after about 5 days. I know we all have the feeling of when a flare up is coming on and for the first time in years......i could feel my reactions calming. Now that im desensitized i drink coffee again but this breakythrough for me just really gave me hope that i could combat these reactions with drugs and change in diet. There should be some threads on the coffee issuenon this forum if you search for it. Not everyone has that reaction to caffinated coffee but I was one that it helped a lot to cut it out.Bianca On Jul 9, 2011, at 7:06 AM, aio_cps@... wrote:

BiancaGiving up coffee helped you? Please share moreI drink a venti hazelnut sugar free latte everyday Sent from my iPhoneOn Jul 8, 2011, at 1:02 PM, Bianca <bianca_f75@...> wrote:

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg basis.Im not 100% in the clear. I still do get congested

when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same

boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Re: Frustrated and feeling

[Guest guest]

Ya i wondered howd i survive lol. No sleep and no coffee Bianca On Jul 9, 2011, at 2:10 PM, joan harvey <thomyris7@...> wrote:

Hooray! I was hoping I didn't have to try giving it up.On Jul 9, 2011, at 2:58 PM, Bianca wrote:

No i no longer have any reaction to coffee. Aspirin fixed that. Thank GodBianca On Jul 9, 2011, at 12:47 PM, joan harvey <thomyris7@...> wrote:

Now that you are desensitized do you have any reaction to coffee? From what the doctors say, you shouldn't, but everyone is different.On Jul 9, 2011, at 11:09 AM, Bianca wrote:

Hi there, yes before i was desensitized the forum had mentioned the high level of salicylates in coffee (or caffeinie) I was drinking a mocha everyday to combat the effects of not being able to sleep. I had the constant sneezing, nasal drip etc...when i stopped the coffee i noticed an initial improvement after about 5 days. I know we all have the feeling of when a flare up is coming on and for the first time in years......i could feel my reactions calming. Now that im desensitized i drink coffee again but this breakythrough for me just really gave me hope that i could combat these reactions with drugs and change in diet. There should be some threads on the coffee issuenon this forum if you search for it. Not everyone has that reaction to caffinated coffee but I was one that it helped a lot to cut it

out.Bianca On Jul 9, 2011, at 7:06 AM, aio_cps@... wrote:

BiancaGiving up coffee helped you? Please share moreI drink a venti hazelnut sugar free latte everyday Sent from my iPhoneOn Jul 8, 2011, at 1:02 PM, Bianca <bianca_f75@...> wrote:

As you can see we can all relate. I have been diagnosed myself dornthe last 6 years and of that time i became suicidal and wondered how in the world i would live this way for the rest of my life. One of the first major improvements and breakthroughs i had when i stopped drinking coffee cold turkey. Something so insignificant was a huge factor for me. When i stopped (and it was from recommendations from this group on the effects of coffee on people with samters) it gave me a glimmer of hope. It truly made me see that i was a huge factor on getting and feeling better. My "cocktail" Now is 1300 mg of aspirin a day, claritin d 24 hour, and singulair at night. I honestly dont take these every single day and i may skip a day here and there but doing so i usually feel the effects of not taking my meds with 3 days. Oh and i rarely have to use an inhaler and have been exercising on a reg

basis.Im not 100% in the clear. I still do get congested

when around some outdoor allergens but where i am now is leaps and bound above where i was a few years ago.My biggest issue i feel now is the battle with depression and the fatigue. I get tired very easily especially when ive been outside for extended period of time. But u know what? I do give myself a day torest, to go to bed early, and to sleep in late.'that one day a week helps to even me out some. Another thing ive used to help when im flaring up are hot baths. I can tell you to please look at your diet for relief. No it wont cure you but it may just give you that glimmer of hope to show that you can make this disease more manageable. I also agree with finding a new doc as surgery isnt always the option. But the again i thinkmthis group has helped more in the manqgement of this disease than my doctor has.Good luck keep posting. We are all in the same

boat!!Bianca On Jul 7, 2011, at 7:42 PM, Crusher Miler <crusher75060@...> wrote:

My GE has me on prilosec and some anti-spazam med to help calm things down. I haven't had an episode since I been off the pred for 2 months now. Since I just had the surgery, hopefully I won't need the steroids for a year or so. It will give me a chance to get some of the weight off that I gained over the last full year of steriods. Crusher From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thursday, July 7, 2011 12:13 PMSubject: Re: Hypereosinophilic Syndrome

I have similar swallowing problems. My gastro-enterolgist did not think it was prednisone that caused it.

I tend to disagree with him. Hence the lower dose that I now use.

I now have to take diltiazem 30 mg before meals to relax the esophagus. Fortunately it's a cheap drug.

Re: Frustrated and feeling