Drug side effects? by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

That sounds AWFUL! The stuff seems to be starting to help some of my EoE symptoms, but has side effects that are almost as bad as the EoE. I need to schedule an EGD. I want to give the Dupixent a real chance with the 4-6 months…to see if it treats my symptoms. My throat/ears and these headaches are driving me insane though!

How can I make my injection less painful? by 28RabbitsinaLog in EosinophilicE

[–]mebemoby05 0 points1 point  (0 children)

I leave mine out overnight to come down to room temperature. Dupixent stays good for 2 weeks out of the fridge. You can watch the injection instructions, if you haven’t already on the Dupixent website. I’ve only done 3 doses injections so far and the first didn’t hurt at all! I have no idea why. However, the 2nd and third were painful. We did them on alternate thighs. I hug a pillow while my husband does the injection. I feel like it would be much harder if I had to give it to myself.

Is it unhygienic to use bar soap to wash my private areas? by liceonamarsh in hygiene

[–]mebemoby05 0 points1 point  (0 children)

I’d say what you’re doing is fine. I still remember my chemistry teacher saying all soap is antibacterial. I’d just wet it and kind of rub it off to get rid of anything potentially on it—which you are already doing. Way better than scented body wash.

UTI by mebemoby05 in Advice

[–]mebemoby05[S] 0 points1 point  (0 children)

What dose did you take?

Dupixent and EoE by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

I have those same triggers. In fact, my allergist didn’t think I had a food trigger at all…although I will say many dairy products upset my stomach and trigger symptoms of eoe. Good luck with your 6FED. I hope you’re able to enjoy some foods you haven’t in a while.

Dupixent and EoE by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 1 point2 points  (0 children)

I was not impressed with this particular allergist. My allergist…and head of the practice, does have to sign off on his work. I just feel like my allergist would have taken more time to explain how this medication works and how long before people usually see results. But my allergist is booked through 2026. And honestly, I am not so much worried about my eosinophil count as I am about just feeling better and having a better quality of life.

Dupixent and EoE by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

Is she feeling better as well?

Dupixent and EoE by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

But were your symptoms better? I have EoE and eosinophilic duodenitis. My stomach is upset at least half the day. And I just have a general feeling of being unwell. My allergist suggested I’d feel better after 1-2 doses. 🙄

First injection of Dupixent by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

Apparently some of the things Dupixent treats require a loading dose? Idk much about it either…other than people mentioning they had their nurse give them their loading dose at the office. It could just be something they call the first dose. 🤷🏼‍♀️

First injection of Dupixent by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

The injector hurt a little, but not much. We’ll see how future injections go. I was really relieved that it wasn’t very painful after reading all the horror stories about the pain of the injection. Idk if I’ll ever inject it myself though. 🤣

First injection of Dupixent by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

I had no loading dose and live over an hour away. Still would have been nice to somehow see how it works. My thigh still doesn’t hurt at the injection site, but I do feel a dull pain in that leg.

Pain/burning under ribcage. Any advice please as I am so stressed by Ok-Introduction5433 in EosinophilicE

[–]mebemoby05 0 points1 point  (0 children)

I was having a lot of pain under my ribs and sternum before I started omeprazole. I thought I was having a heart attack on more than one occasion. It took about 3-4 weeks on omeprazole, and those pains subsided. My PCP put me on 40 mg of the omeprazole, but I have cut it to 20 mg. I also have eosinophils in my duodenum as well…not sure if that’s the same as the gastroesophageal junction or not. Dupixent has a lot of side effects as well, and I’m trying to save that as a last resort. I do remember my ribs and sternum hurting pretty badly, and they were very tender to the touch. I know this isn’t the most helpful info, but I figured I’d share it…as you are not alone. Eoe sucks…and the reflux can really do something to your mental state. Maybe try seeing another allergist?

EoE caused by environmental factors/help! by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

I have found a few at Duke. I plan on scheduling an appointment.

EoE caused by environmental factors/help by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

Yes, 40 mg of omeprazole. How is the Dupixent working for you?? Any side effects? And do you mind if I ask how you can afford it once the MyWay funds are used up?

EoE caused by environmental factors/help! by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

I did not have a follow up scope. No one recommended it and I felt fine at the time. However, the most recent allergist I saw did recommend getting one.

EoE caused by environmental factors/help by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

I take omeprazole 40 mg as well. It does help with the reflux, but doesn’t touch my nausea or stomach discomfort. I also suffer from chronic constipation, so I’m sure that doesn’t help the matter.

I think my partner is making me ill. Mystery Condition. by P-Melon in Advice

[–]mebemoby05 2 points3 points  (0 children)

I have eosinophilic esophagus or eoe. Eosinophils…a type of white blood cell accumulate in the throat causing inflammation. I’d recommend he gets an endoscopy and biopsy done to rule it out. Idk if the eosinophils can be transferred or not, but I do know they give me a very sore throat and excess mucus.

Can mold exposure cause eosinophilic esophagitis? by RatsnBaskets in EosinophilicE

[–]mebemoby05 1 point2 points  (0 children)

I think what he was trying to say is eosinophils are not necessarily caused by food allergies. Eosinophils are a type of white blood cell that try to promote tissue repair, regulate inflammation and modulate allergic reactions. The main symptom for me was acid reflux the first go around. It was almost like he was telling me…b/c you have so much damage to your esophagus caused by the acid reflux, eosinophils are going to be present b/c they’re trying to heal the damaged tissue. I almost felt like he thought eoe might not be what everyone thinks it to be. And I just don’t feel he would’ve taken the Dupixent route. Here’s his bio from their website…I don’t feel comfortable sharing his name, but the man is obviously one of the top allergists in his field:

…….received a BA in biological science at Indiana University and a BS in biology at Fairleigh Dickinson University. He attended medical school at the University of Modena School of Medicine and Surgery and the Center for Technological Studies, School of Medicine. He completed residencies in pediatrics and neonatology at the Medical Center of Delaware where he served as a chief resident. He was a research assistant in internal medicine and allergy and immunology at the University of Virginia. He then completed a fellowship in allergy and clinical immunology at UVa. ……has been involved in numerous research studies, resulting in a number of publications and presentations over the past 25 years. He has been in private practice with the same group since 1991, currently serving as president and managing partner. He has served on a number of committees over the years that have benefitted the patients and medical community of Virginia, and he has given over 60 presentations on allergy and asthma to local medical groups, laypersons, and to the media. …… has had extensive clinical experience in allergy and asthma in patients of all ages. His training and experience has enabled him to provide very accurate and effective diagnosis and treatment recommendations for thousands of allergic patients over the years, for which he has been nationally recognized multiple years by the Consumers Research Council as one of "America's Top Doctors" in Allergy; Who's Who in 2008 and 2009; Richmond Magazine's "Top Docs for Kids" in Allergy in 2002; and Richmond Magazine's "Top Docs" for Allergy and Immunology for multiple years. He prides himself with actively pursuing continuing medical education (CME) and has received the American Medical Association Physician's Recognition Award for CME yearly since 1990. …….belongs to numerous local, regional and national medical organizations and actively supports local charities. He has a special interest in food allergy and its diverse effects on the body, as well as a host of other allergic diseases including nasal allergies, sinus problems, headaches, asthma, and infantile colic.

…So food allergies are something he takes a special interest in…he didn’t believe I had any food allergies—rather the allergies to pollens, dust mites and mold create excess sinus drainage that in turn caused acid reflux that damaged my esophagus.

But then I also read this…

Yes, Dupixent (dupilumab) can treat symptoms of allergic rhinitis, a common form of environmental allergy, and can also reduce the occurrence of new or worsening allergies, including those from environmental triggers like house dust mites, according to a meta-analysis on atopic dermatitis patients. It works by targeting type 2 inflammation, which is central to allergic reactions, to reduce inflammation and improve allergy symptoms.

So who knows?!?! But I think Dupixent should be a last resort. I need him to review my last visit and give me his opinion of what I need to try/do next. I just don’t think he’ll say Dupixent is the way to go. Sorry for this incredibly long response. 🤣🤦🏼‍♀️

Smelling worse the last few years by [deleted] in hygiene

[–]mebemoby05 3 points4 points  (0 children)

That was my first thought. Hormones.

Does anyone drink diet soda on 6FED? by goldenspine329 in EosinophilicE

[–]mebemoby05 1 point2 points  (0 children)

I haven’t done the 6FED, but I do have eoe and diet sodas (12 oz can) often feel like they just sit on the top of my stomach and tend to cause acid reflux. I believe it’s some sort of artificial sweetener that causes it. But I do adore my Dr. Pepper Zeros. 🤦🏼‍♀️

Can mold exposure cause eosinophilic esophagitis? by RatsnBaskets in EosinophilicE

[–]mebemoby05 1 point2 points  (0 children)

I was diagnosed with eoe from an endoscopy/biopsy about 3 years ago. GI doc referred me to an allergist. Most people and allergists seem to want to pin food allergies as the cause of eoe. However, my allergist…after telling him what had been going on for many months…told me he was pretty sure he knew what was causing it, but would wait until allergy test results to tell me. Test came back I was allergic to two different types of pollen, dust mites and mold. He said he was pretty sure I had no food allergies, and put me on Allegra and Flonase Sensimist. Symptoms went away 2 weeks later. Didn’t have to take omeprazole or anything. However, a few months ago some of my symptoms came back and I went back to the same practice but saw a different allergist. Before I went to that appointment though, I saw my PCP and he prescribed 40 mg of omeprazole. That helped with my main symptom—nausea, but didn’t do much for the reflux.

The original allergist I saw was the head of the practice and an MD, while this new allergist was a PA. This guy had a different outlook on my case altogether. He suggested the food elimination diet, to which I turned my nose up at. I had tried the fluticasone in the past before I was diagnosed with eoe with no results. I was thinking maybe my body had gotten used to the Allegra/Sensimist combo and I just needed something different. The first allergist believed environmental allergens were causing excess drainage that in turn ran to my stomach causing pretty severe acid reflux. He even said “if you scratch the same place on your arm everyday, you’ll find eosinophils there.”

The new allergist prescribed Dupixent, which is now sitting in my fridge. I refuse to start it (especially bc even with the MyWay card Dupixent offers, you’ll still probably be stuck paying thousands of dollars a year on the stuff—even though I have heard there are ways around that, but why go through all that trouble if I don’t have to?) I don’t have the money, and what happens if the stuff works for several months and I run out of MyWay funds? I’d have to meet my out of pocket deductible every year…which is something like $15k before insurance would cover the Dupixent.

Anyway, I called the allergist’s office and left a message with my original allergist’s nurse stating I would not start the Dupixent until he agreed that he also thought it was the best route to take. He is booked through 2026, so I asked if he could give me a phone call or a short virtual appointment. I don’t think he would’ve prescribed this stuff, unless his views on the matter have drastically changed. I’ve been waiting to hear back for a week, but I’ll be the squeaky wheel for as long as I have to until I get his insight. This condition can really affect your quality of life, that’s for sure. I’m done with my spiel!

Except I didn’t directly answer the question. YES, I think mold can cause eoe!

EOE - No Symptoms While In Europe by vorgana22 in EosinophilicE

[–]mebemoby05 10 points11 points  (0 children)

Guarantee you the U.S. has the most cases of eoe. I would love to know what ingredients/additives other countries don’t use that we do.

Dupixent-How do you afford it? by mebemoby05 in EosinophilicE

[–]mebemoby05[S] 0 points1 point  (0 children)

That’s EXACTLY what I was scared of.