How do you take meds for Eosinophilic Esophagitis?

splenda sucraloseI was diagnosed with Eosinophilic Esophagitis (EoE) this summer, which is an allergic condition involving difficulty swallowing and narrowing of the esophagus due to the presence of eosinophils in the esophageal tissue. Ordinarily, these inflammatory lymphocytes would not be present in the tissue of the esophagus, however some people with food allergies may develop this condition. It has ties to asthma, which is another condition where eosinophils collect where they’re not supposed to be.

There is no officially approved medication for treating EoE but many studies have shown improvement for those swallowing a viscous solution of corticosteriods, which are used for asthma treatment, though modified so they will coat the throat instead of heading down into the lungs. My doctor prescribed me the most commonly used one, budesonide 0.5mg, which are in the form used in a nebulizer for asthma. Everything I’ve read online in case studies shows that this form is mixed with 5 packets of sucralose sweetener and then swallowed, with nothing else taken by mouth for 30 minutes after.

Success rates or abatement of symptoms is very good, up in the 80% range in the studies I read, so I’m confident in trying this method. But I’m not sure about making this viscous solution, as I can’t see how the ampule of budesonide (it contains 2ml of fluid) could mix with 5 packets of sucralose (aka Splenda) and make a swallowable concoction. I also don’t like the taste of Splenda, so I’m wondering if there’s another sweetener or substance I can mix this with to try it out.

Basically, I’m afraid I’ll end up with a mouthful of bitter stuff and a numb tongue, as I did when I tried to dry-swallow a standard inhaler. So I’m wondering if anyone else has any suggestions or has tried a similar treatment? Do you have any pointers?

PS: just found this video on YouTube showing a mom preparing the viscous budesonide for her son. It looks like a “snowball” (as she calls it) which is very different from how I interpreted it from instructions. Thank you, YouTube!

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5 thoughts on “How do you take meds for Eosinophilic Esophagitis?

  1. Hi, and welcome to the club.

    Do you have a compounding pharmacy near you? My doctor also initially prescribed budesonide this way, but I just couldn’t stand the thought of all that sucralose. My then-PCP suggested a compounding pharmacy and they now mix me up a suspension in methocel. I posted about it two whole years ago now (http://eosgirl.wordpress.com/2010/08/05/score-perhaps/) and continue to take it that way.

    It’s been pretty effective and, in fact, I understand from the pharmacist that my gastroenterologist has now sent a number of patients her way. The only downside is that our insurance only pays the cost of the active ingredient and usually not the compounding fee, but it still feels worth the expense. It’s good and sticky, and has been very effective for me.

    I’ll look forward to reading more about your journey.

    • Thanks for the tip! Yes, there is a compounding pharmacy in town – I’ll ask whether they can prepare a suspension for me, as they are focused more on hormones. I have been taking budesonide in apple sauce for the last couple of weeks – I can’t decide if it’s helping or not. Though I stopped taking it yesterday and today have horrible heartburn. I’ve only been taking it 3 weeks, so it may be too soon to tell.

      I’ll check out your page. I’m definitely pretty low on the learning curve when it comes to EoE :)

  2. I did not like the thought of giving my son sucralose, so tried mixing it with maple syrup. The endoscopy showed that it really was not nearly as effective. My son’s doctor insists that sucrolose is the only thing that coats the esophagus correctly…. Luckily I have now been able to manage his EE with diet, but he has endoscopies every 6 months.

    • I wonder if this is because the maple syrup already has liquid in it, making it less concentrated. That would make applesauce also the same – less effective. Hmm. I’ll have to research this more. I enjoy it with applesauce so much more and really dislike sucralose. Thanks for the info!

      • THe doctor said that the sucralose sticks much bettter to the lining of the esophagus and his results were better with the sucralose than the syrup- however it still only helped the top of the esophagus…. Luckily he can now control it with diet. The doctor is part of the team that is working on the medicines to help EE and said they were trying to find alternatives to sucralose- I’ll ask at his next appointment. Good luck!

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