Eosinophilic Esophagitis Online Support Group

I have just been diagnosed with EE a few months ago. I have googled EE trying to find some information on it, but didn't find anything really helpful. I constantly have bad heartburn and the feeling that I have a knot in my throat, and every so often severe stomach pain. I have been put on nexium and flovent and since we are military and getting ready to move again, I have to wait to see the allergist until I get to the new base. I would really appriciate any information on others long term treatments and others experiences in dealing with this. Thank you

Hi im also 25 with EE. Im on protonix for mine and might try steriod inhaler. Just about the only thing out there right now. My throat still bugs me after seeing allergist and eliminating things they thought i was having a reaction to. So hope all is well get back with me on anything.

I'm not sure what will work for everyone, but do get in for skin prick allergy testing when you can. A lot of my problems are pollen related. My allergist says a lot of adult EE patients get some relief in the winter. I take a claritin, singulair, and a steroid inhaler every morning. Before bed I take another shot of the inhaler and a Zyrtec. I also avoid the foods I am allergic to. It's been great. I went from getting good stuck every day, stomach aches and chest pain to problems maybe once a week when I failed to take my mess or ate something I shouldn't have. Life has gotten much better. It's also nice having a diagnosis and knowing I'm not crazy.

Here's the thing that is going to be extremely difficult for me....I am so against taking drugs except when absolutely necessary. While I was going to school I worked as a hospital pharmacy technician and I've seen firsthand the side effects of taking any drugs and how people get their systems so out of whack. I'd prefer to be able to control my problems by changing my diet. I'm hoping that's all I will have to do. By the way, I took my persciption to the pharmacy for Nexium and was told the price would be over $200 for 30 capsules. I go to the doctor on Friday once again. From what I read, Nexium is used to heal the esophagus. I'm hoping he will tell me it will heal itself if I change my diet.

Post edited by: justjoan, at: 10/14/2012 05:10 PM

I don't have my first visit with the specialist until Friday, so last night I decided to ignore my diagnosis and eat a peanut butter sandwich for supper. I will never do that again. Pretty sure. I woke up with my esophogus literally moving in my chest. It went on for hours.

Kayleigh, from what I've read, very few people have this and it really wasn't a disease discovered until possibly 2008. I think we won't find too many around us with the same condition. 2 in 10,000 from what I read. I live in a town of 140,000, so by my calculations there are only 28 of us in Evansville, Ind. I'm not great at math, so forgive me if I'm wrong. There are only nine of us on the site.

Here's an update with me: I take prilosec 20mg 2 x day. I did inhaled flovent for 8 weeks. I had slight positive reactions to milk and eggs on scratch test. I always suspected diary my whole life!! I strictly eliminated milk and eggs. I stopped the flovent after 8 wks, remained on the prilosec and diet. My symptoms started to return. I'm back on the flovent. Right now we are trying to find the lowest effective dose so I can maintain for the long haul.

I did a lot of research and after talking with my doctors, my plan is to control the inflammation. Instead of going through the cycle of stopping the meds and relapsing I will maintain my current regimen. I feel so much better now.

PPI's are relatively "safe" medications without serious side effects. The flovent is a swallowed steroid inhaler. In this form, there is only a small amount of steroid that enters your system. This greatly reduces side effects. Long term effects are unknown because they haven't been studied in a "swallowed" form. But think of it this way, this is the same medication people with asthma take. It is safe for people with asthma to take flovent in the long term. As my allergist points out, even when you inhale it, you end of swallowing most of it! So all in all the benefits outweigh the risks.

Diet alone works well for children with EE. In adults, diet is not as effective, but it can help. I think the damage has been done. I was very reluctant to try the meds. I'm a fitness and health nut. I'm also a nurse. I've battled with the idea of being dependent on meds. After doing research and talking to my doctors I accept this now. Not to mention, I feel soooooo much better!

My long term plan: No milk no eggs. Prilosec once a day. Flovent 2 puffs (swallow) per day. Live happily ever after.

I might sound a bit naiive here, but aren't Prilosec and Nexium for acid production?? I quit taking all my GERD medications when I was diagnosed. Once I made the diet adjustments and doubled up on allergy meds the GERD like symptoms went away. I'm just adhering to my food limitations and praying for a good freeze to decimate the pollen count.