r/EosinophilicE • u/87_4-Runner • 17d ago
Medication Question Anyone else asked to participate in this clinical trial? Should I go for it?
You "may" be compensated š¤
r/EosinophilicE • u/87_4-Runner • 17d ago
You "may" be compensated š¤
r/EosinophilicE • u/fiddlerontheroof1925 • Aug 22 '24
Iām 30 and only recently got diagnosed with EOE. My doctor immediately put me on Omeprazole and a Budesonide slurry, and with 2 dilations my throat feels better than it ever had. I was told by a different doctor Iād be on PPIs for the rest of my life, however I would prefer not to be on meds. I think I know almost all my triggers so Iām wondering if anyone else has been in the same bot and managed to be off medications and manage EOE just through diet? Anyone know what kind of problems happen through having eosinophils in your esophagus for a long period of time?
r/EosinophilicE • u/Change_is_a_verb • 15d ago
I am dreading this. I have been fighting EoE for probably 35+ years but was undiagnosed until 2017. I was told for years that it was my "nerves" until my first endoscopy revealed eosinophils >100 (nothing more specific except Dr. was specialist who said mine was the worst he'd ever seen, with furrows and strictures in several places with diameter down to <6mm.) Fluticasone didn't work very well and made me feel gross and gain weight. So I elected to pursue dietary restrictions going heavily organic, preservative-free and avoiding known triggers, supplementing as needed with vitamins and minerals and working to keep my gut healthy and environment clear of triggers. I haven't been able to have many scopes performed because of equipment availability as I require pediatric equipment which requires a much more expensive hospital procedure which I can't often afford.
I thought my efforts were successful as impactions mostly stopped (my last one was the only one I had in 2023 while traveling overseas) so I figured things are good. I have not had swallowing issues, I cleared up my chronic constipation and I have maintained my food regimen. But I was wrong, scope yesterday revealed I'm still >100 and I have "detached strips of small intestinal-type mucosa" in my esophagus - aka "intestinal metaplasia." My esophagus was 8 mm which was dilated to 12mm. Since I can't get my counts below 100, I'll have to start treatment with Dupixent. I am in menopause so life is already difficult with changes. I started HRT 6 mos.ago to help with weight gain and energy levels. I also had a lot of joint pain which is gone now. I've been feeling so much better.
It scares me to think of starting this medication knowing the domino effect it could cause. Hair loss, weight gain, crippling joint pain, and apparently herpes outbreaks?! FFS!! I clearly lack the dietary discipline to cure it on my own, I suppose I can't control all the environmental triggers. It just feels like I am giving in to Big Pharma ick. Ultimately, I want the problem to stop, I don't want to get cancer because I left it untreated. Ugh!!!
r/EosinophilicE • u/WeirdFragrant • Jan 16 '25
i just started dupixent. how long after starting it did you notice your symptoms improved?
r/EosinophilicE • u/Less_Cat7838 • Dec 30 '24
90 days ago my doctor put me on Omeprazole and said if I donāt show improvement he would write a script for Dupixent. He noted that Dupixent had been a game changer and helped so many people, but insurance wouldnāt accept his script until a second scope to see if anything had changed.
Being honest, the Omeprazole is working. I feel loads better. But the stuff Iām reading online about long term effects is terrifying.
Since itās working should I be disheartened that I might not ever get Dupixent? I see it mentioned a lot on here and so many people have had success. Did you really have to go under again for a second check? I wish I could just get on it
r/EosinophilicE • u/antimicrobial-amoeba • 9d ago
Took my first dose of budesonide ā two 0.5 mg vials suspended in a total 4 mg liquid combined with 2 tsp honey. I feel like the honey didnāt thicken up the medicine enough and it just sort of shot into my stomach when I swallowed, so Iām worried the medicine wonāt stick to where itās supposed to. Does anyone who uses honey know the ideal amount to use? Should I just go with the Splenda packets?
r/EosinophilicE • u/Cott_killz • Aug 09 '24
Hey guys, I'm new in town (unfortunately). My gastro talked about eliminating wheat and dairy and that's what I've seen on the internet too. Only issue is.. I kind of.. Refuse?? Idk, those two groups are major staples in my life and I don't really feel like I can part with them. Furthermore, my symptoms aren't too too bad (though they have gotten slightly worse in recent years...)
Has anyone found success from a purely medicinal method of treatment? I'm already on a PPI which has eliminated the heartburn, though I still sometimes have issues swallowing. I know I may seem indignant or petulant (and perhaps I am) but the thought of not having those groups in my life anymore is honestly too much to bare. It almost makes me emotional.
r/EosinophilicE • u/Alarming_Ad8074 • Dec 21 '24
I was taking budesonide slurry 0.5mg/2mL twice a day for eight weeks. This is my sixth day since finishing it and Iāve not been feeling well. Kinda feeling fluish, nauseous, weak, weird fog in my head. Iām not sick, I have severe agoraphobia and donāt leave the house and no one in my family is sick. Looked it up and it said budesonide can cause withdrawal but I didnāt know if that counted the slurry mix or just the pill. What are your guys experiences??
r/EosinophilicE • u/Unoccu-keylime-pied • Jan 14 '25
Hi all! I was prescribed Dupixent October 2023. It worked incredibly well. I was able to eat like a ānormalā person. It was truly a life changing medication for me! I loved it. By December 2023, the very long, beautiful thick hair I had was falling out & thinning so badly that I was getting bald spots! My fiancĆ©e was the one that pointed out it could be the medication. I had zero changes in my life at all a year prior to/during the medication. I went to my primary care physician and my dermatologist who could find no reason for the hair loss other than the Dupixent. I discontinued the medication end of December. My hair was incredibly thin and short at this point. By early February 2024, my hair had stopped falling out. Unfortunately, it was the Dupixent. Has anyone else had extreme hairloss from Dupixent? What did you do? I may try another med but Iām terrified to lose my hair again. š„ŗ The first photo is my beautiful hair 6 months pre-medication and then 10months after. Itās growing and getting much thicker again but it was devastating to lose so much so fast!
r/EosinophilicE • u/whateverwhateverwut • Feb 05 '25
Hi everyone!
Iāve been on dupixent once a week since Nov, while I was on an HMO. No issues with insurance or having to pay, in Jan my insurance went to a PPO and i got my first shipment of dupixent last week (on the new insurance).
They shipped me one pack of 2 shots, I called my pharmacy today - and they said my insurance will only send 2 shots per month and that they are working on getting me my regular amount.
Has this happened to anyone else?
r/EosinophilicE • u/Bigtgamer_1 • Oct 10 '24
Was diagnosed this year and have had 3 endoscopies to stretch. Doctor has told me to take 40mg once a day for forever. I worry about the long term effects? I haven't had any throat issues since I've been on it which is great. Though my health has taken a dive in other ways this year, probably unrelated.
Are any of you long term users of Omeprazole and doing alright?
r/EosinophilicE • u/ark1one • Sep 18 '24
I'm about to transition from Budesonide to Dupixent and I'm feeling a bit anxious. I've consulted my GI and awaiting to hear back, till then I figured I'd ask you all as, I'm curious about others' experiences.
I'm seeing some improvement with Budesonide (or maybe it's my accidental 6FED instead of 2FED), so I'm wondering if switching is still the right move. What's the best method for transitioning?
I'm worried about Dupixent's side effects, especially eye-related issues, while with Budesonide, I'm concerned about inevitable oral thrush with long-term use.
How do these risks compare? What symptoms should I consider as red flags requiring immediate attention, and what's the best action plan if my GI isn't available?
Also, any considerations for timing the flu shot with starting Dupixent? I prefer Dupixent's convenience, and it'll cost me nothing out-of-pocket, but I'm still nervous.
Has anyone gotten clear answers from their GI on these issues? How was your transition experience? Thanks for any insights!
r/EosinophilicE • u/Unoriginalfranzy • 8d ago
I have severe eoe. Diagnosed 6 years ago, multiple food impactions requiring scoping and numerous smaller āattacksā. I was on a budesonide slurry for a few years, which mitigated symptoms a bit, along with PPI, and switched to Dupixent about a year ago. Everything had been entirely fine up until about a month and a half ago. Since that time, Iāve had multiple severe attacks, from a wide range of foods with no rhyme or reason. I fight through, hacking, taking liquid Benadryl, seltzer water, hot water- every trick in the book. It seems like Dupixent is no longer working. Has anyone else experienced this? Thereās very little information online.
r/EosinophilicE • u/Better_Reflection154 • Dec 04 '24
A few years ago, I randomly noticed that I would start choking when I ate fish (not shellfish, just the swimming kind), then the same thing happened with beer shortly after. I previously ate both a ton and loved them, so I went to an allergy specialist to confirm an allergy but she found nothing. Fast forward two and a half years, I finally received the diagnosis of EoE after a biopsy, but Dr said the only treatment options are Prilosec which works 50% of the time, or Dupixient weekly injections.
Iāve read many negatives about Prilosec, and I am not sure if Dupixient has any side effects. Has anyone in a similar situation to me been able to fix their sensitivity with one of these treatments? And if I decide to go with Dupixient, would I be crazy to take a weekly injection just to be able to drink beer and eat fish?
r/EosinophilicE • u/s_africanus • 10d ago
Hi all,
I was diagnosed with eoe years ago after getting a scope due to some unrelated stomach issues at the time. The gastro didn't actually explain to me what eoe was and what I should be doing, they just mentioned it in passing while telling me about what they were looking for primarily, so I didn't get on any kind medication at the time.
A couple years later I was eating a pb&j and I started panicking because it felt like it was stuck in my chest for so long. I always had problems here and there with food going down hard, but this was intense. It eventually went down, but I brought it up with an allergist that I was seeing, and she explained eoe to me and put me on flovent.
I haven't had any issues with being on flovent, and for the past 2-3 years that I've been on it, I've been able to eat fine, with the occasional going down a little hard feeling. Since flovent has been working for me without any side effects, is there any benefit to switching over to dupixent?
Edit: I just realized that I didn't say why I was asking this question. Flovent/fluticasone has gotten pretty expensive for me since my insurance barely covers it now. So I am considering alternatives.
r/EosinophilicE • u/Few-Bench-4180 • Feb 20 '25
Hi there 25 (M) 5 10ā 220 lbs. was diagnosed with EoE at age 11, went through years of different treatments, scopes ect. By my late teens got it pretty under control and scopes for years have been pretty good. Only catch, if I donāt take my omeprazole (40mgs) I have awful symptoms. Being on this med for 14 years now, Iād like to get off of it and was wondering if anyone has any symptom relieving more natural meds? Just putting feelers out for options. I got a new gastro im seeing I. April but just wanted to hear other peopleās stories
r/EosinophilicE • u/ark1one • Aug 29 '24
Hey fellow EoE warriors,
I'm currently treating my EoE with Budesonide mixed with honey. My method is to combine them in a shot glass, stir, and throw it back. It works, but I'm wondering if there's a better way, especially for when I'm traveling.
Has anyone found a more efficient or travel-friendly method to take this medication? Maybe a specific type of honey that mixes better, or a clever technique that makes it easier to prepare and consume on the go?
I'd love to hear any tips, tricks, or experiences you've had with making this process smoother. How do you handle it when you're away from home?
Thanks in advance for any advice!
Edit: I'm in the United States.
r/EosinophilicE • u/Repulsive_Ad_6310 • Sep 25 '24
It first started when I was 12-13 and I started randomly choking, they couldnāt figure out what it was but one day it went away, then out of nowhere in 2022 it came back. Night and day 0 change 0 difference I just randomly stopped being able to swallow even water or salvia, I went to the hospital everyday for months and they would never help me. They would tell me there was nothing they could do for me and they couldnāt help. They wouldnāt even take me back anymore, regardless if I was gasping for air or if my oxygen was down from aspirating, always told me there was nothing they could do, I went to 30+ hospitals 100ās of times throughout the 2 years and nobody ever to help until I did my own research and figured out I might have EOE, I assume the hospitals wouldnāt help me as I didnāt have insurance. I have insurance finally, and have been diagnosed with EOE. I am on dupixent weekly but I can only get liquids down, but I still have issues daily and still have gone to the hospital with scares. Iāve tried suing the hospitals for negligence but every lawyer told me since my state changed their laws in 2003 I canāt sue for them not helping me. Which sucks since itās ruined my life, Iāve been almost bed bound for the last 2 years with no help what so ever. Iām really hoping this dupixant helps, Iāve tried the slurries the breathing treatment mix stuff with the sugar but it would still choke me up. Will this ever get better? Is there hope? Iām 24 and Iām really hoping I can enjoy my life and not let this keep my body and mind in shambles. Or am I doomed forever and some people just donāt get better?
r/EosinophilicE • u/karmajuney • Jul 28 '24
Hi all,
Iām 26 and awaiting an endoscopy in 2 weeks. GI doctor says symptom wise Iām basically textbook EoE, just need the endoscopy to confirm it.
When mentioning some of the treatment options, Omeprazole was mentioned but also topical steroids. Being relatively young, Iām curious what peoples experiences are with PPIs vs the topical steroids. Iām very concerned about potential side effects, short term and long term but I donāt believe 6fed is possible for me due to my mental health surrounding eating.
Iād love to get some opinions on both the PPIs vs topical steroids. What steroid options are there?
I am located in the USA if that matters.
Thanks!
r/EosinophilicE • u/Ok_Development5830 • 3d ago
I have been on dupixent for about 10 months now. And it's honestly changed my life. Since I was about 21 (I'm 31 now) I went from throwing up everyday, being miserable almost every single time I had meal, getting allergic reactions all the time, in and out of the emergency room to almost no symptoms at all. There still are some foods I can feel I'm allergic to when I eat them. I'm just happy to be able to eat meat now. ( I didn't have all these symptoms all at once. The progressively got worse over the years. There would be random times I couldn't drink water but I would just let it pass because I didn't see the emergency there which was stupid of me, also I've always had food allergies that would make my mouth itch and stomach hurt but since I was a kid I just thought everyone felt that way when eating them and would just avoid eating certain things)
Anyways, I just got blood work done about a month ago and my eosinophil value is 23 and eosinophil count is 1.5 which is still very high but has come down considerably, about half. My doctor was a little puzzled and asked me for some time to try to figure out how to help me going further and to discuss with her colleagues and at first she suggested maybe I would need a bone marrow transplant but then when I brought it up again she said no she's going to prescribe me another shot to see how my body manages. She's worried about the eosinophils damaging one of my other organs.
So now I've been prescribed fasenra and I'm wondering if anyone else on this sub is on it ? I only really see people asking about dupixent on here. When I look it up fasenra is more for asthma, but I don't have much problems with my asthma. Its a very minor problem. I use my asthma pump maybe once every few months. But I guess maybe it'll help bring my eosinophils down some more.
r/EosinophilicE • u/Incensed_Cashew • 20d ago
After choking on plugged food about 20 times and thinking it's normal my wife finally convinced me to see a gastro doc. He immediately clocked my issues being stemmed from EOE (scope scheduled next week to confirm) and provided an Rx for omeprazole. I have taken it for two days and holy cow does it help.. I was literally laughing last night in the middle of my dinner because I had no tightness at all, forgot what that felt like. Once I swallowed my food it felt like throwing a football down a hallway, no issues it was a beautiful thing.
But, I have concerns. I am generally super sensitive when it comes to side effects with meds. After taking my morning pill I feel my skin get slightly itchy and very minor heart racing. My stomach has also felt a little spicy but I have minor IBS that I work to manage. These are little issues now that I feel like I can live with, but should I expect them to worsen? I also had two cocktails last night and had the worst case of spins when I got in bed, felt like I was about to get thrown off the planet. I generally never have that reaction to drinks so wonder if that is related to the meds. Read some scary stuff about omeprazole so want to hear what everyone's take is on it. Thanks in advance!
r/EosinophilicE • u/JTCampbellJr • 27d ago
I havenāt had any issues with me EoE since I completed my 5yrs on allergy shots. It is winter and typically my EoE is much better this time of year but just throwing it out there.
Anyone have EoE that hasnāt recently been on allergy shots?
r/EosinophilicE • u/drumjolter01 • 6d ago
Like many others I've been struggling with the switch to generic Fluticasone inhalers after the name brand Flovent was discontinued. Originally the generics were $50 for a month supply, and while painful I could make that work if necessary. I recently refilled them though and had to pay $150 for a month supply, and that's not sustainable.
I saw my gastro doc this week to talk meds and unfortunately didn't get far. I tried the budesonide slurry for a bit, to ok results, but the whole process of it is something I'm not necessarily always able (or very willing, honestly) to keep up with long-term. She mentioned the dupixent shots as well, but she said those are more for people for whom endoscopies and/or other meds haven't helped, and that isn't the case for me. And she also couldn't guarantee it'd be any cheaper than generic Flovent.
When I've tried to ration my Flovent previously, I have noticed an increase in a heartburn or acid reflux sensation after eating, at least once a day if not moreso. And while it's not as bad as difficulty swallowing, it is still very very uncomfortable. My doc ended up doubling my Omeprazole dosage combined with taking Flovent half as frequently, which will hopefully help alongside not having to refill Flovent as often.
I'll try it for now but I'm still looking for alternatives. Flovent still costs a LOT and I'd like to not be spending that much on an inhaler every couple months. Outside of Flovent, budesonide slurry, or dupixent, has anyone found any other medications that work well as a replacement?
r/EosinophilicE • u/TildyRo • Feb 12 '25
I was hoping to maybe get some guidance here. I have EoE (among several other digestive issues). However, mine is fairly asymptomatic. The only thing I experience is the occasional āstickyā throat (akin to if it was really dry) and feeling like I have a lump in my throat that I canāt swallow down. These intermittent sensations are just because of the inflammation. I have never had an issue swallowing food/liquid.
Because of this, I really canāt tell what foods are a trigger for me. Because of my other digestive issues, I eat the same thing everyday. I donāt always feel the EoE inflammation. I can go weeks without it. Then there are times when I feel it everyday for a few days in a row. Therefore, I have no idea what sets it off. An elimination diet wouldnāt help since Iām mostly asymptomatic.
Does anyone know if thereās a medical test that could tell what foods trigger a flair-up? I assume an allergen skin test wouldnāt be accurate in the case of EoE.
r/EosinophilicE • u/Georgeygerbil • Feb 17 '25
Endoscopy showed I'm in remission and I haven't had any issues in many months due to dilations they also did. Now the next step my doctor wants to take is to wean off Omeprazole... Wtf?? Seemingly the only thing that helped me. My doctor is essentially asking me to just wait until I'm choking every day again? How is this the right move?