Hypereosinophilic Syndrome

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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.