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  • Jefferson Adams
    Jefferson Adams

    Open-Capsule Budesonide Offers Hope for Refractory Celiac Patients

    Reviewed and edited by a celiac disease expert.

    Most refractory celiac patients treated with open-capsule budesonide saw significant improvement in their condition.

    Open-Capsule Budesonide Offers Hope for Refractory Celiac Patients - Open-capsule budesonide is a promising treatment for managing refractory celiac disease. Photo: CC--Petteri Sulonen
    Caption: Open-capsule budesonide is a promising treatment for managing refractory celiac disease. Photo: CC--Petteri Sulonen

    Celiac.com 05/24/2017 - Refractory celiac disease (RCD) is a rare manifestation of celiac disease that is difficult to treat, and often results in death from enteropathy-associated T-cell lymphoma.

    Doctors looking to treat RCD have found very limited success with a number of immunosuppressive medications (IMs), including azathioprine, systemic corticosteroids, or regular budesonide. A team of researchers at the Mayo Clinic recently set out to assess open-capsule budesonide (OB) treatment on RCD patients, including those who saw no improvement with previous IM treatments. The research team included Saurabh S Mukewar, Ayush Sharma, Alberto Rubio-Tapia, Tsung-Teh Wu, Bana Jabri and Joseph A Murray.

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    The team first looked for RCD patients treated with OB at Mayo Clinic, Rochester, Minnesota from 2003 to 2015. They then reviewed demographic, serologic, and clinical variables in these patients. The team found a total of 57 patients who received OB as treatment for suspected RCD.

    Based on clonal T-cell receptor gamma gene rearrangement or aberrant phenotype of intraepithelial lymphocytes (IELs), the team classified 13 patients (23%) as having RCD-2 and 43 (75%) as RCD-1.

    The team was unable to determine TCR gene rearrangement status for one patient (2%). Most patients were women (69%), with an average age of 60.5 (+/- 3.5) years, while average body mass index was 28.4 kg/m2.

    Nearly 75% of patients suffered from diarrhea, with an average of 6 bowel movements per day (range, 4–25). Nearly half of these patients failed to improve with IM treatment. Twenty-four patients (42%) were anemic, while 12 patients (21%) had hypoalbuminemia. Biopsies showed Marsh 3 lesions in all patients, broken down as follows: 19% were Marsh 3a, 46% were Marsh 3b, and 35% were Marsh 3c.

    After OB therapy, 92% showed clinical improvement, while 89% showed histologic improvement. Subsequent biopsies showed that 7 out of 13 patients with RCD-2 (53%) displayed an absence of the previously observed clonal TCR gamma gene rearrangement/aberrant IEL phenotype. During the follow-up period, two patients died of enteropathy-associated T-cell lymphoma.

    Most RCD patients show clinical and histopathologic improvement with OB treatment, including those who previously failed to respond to other IMs.

    These results show that treatment with open-capsule budesonide is a promising option for patients looking to manage RCD.

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    john pate

    Hi my name is John and I have had RCD2 for the last 7years. I no longer take azathioprine but I am still taking budesonide 15mg per day I have a marsh code 3c. Can someone please tell me what is the long term affect with people like myself and what will the outcome be. 

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    Scott Adams

    It's probably best to start a new topic in our forum for this, but in general you should be sure that your diet is 100% gluten-free, as some with refractory celiac disease are actually getting contamination in their diets, for example if they eat at restaurants. Sorry, but I'm not sure about the long-term side effects, but you may want to have a look at this more recent article on this drug:

     

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    USF1970
    On 9/22/2021 at 10:18 AM, Scott Adams said:

    It's probably best to start a new topic in our forum for this, but in general you should be sure that your diet is 100% gluten-free, as some with refractory celiac disease are actually getting contamination in their diets, for example if they eat at restaurants. Sorry, but I'm not sure about the long-term side effects, but you may want to have a look at this more recent article on this drug:

     

     

    On 9/22/2021 at 5:06 AM, john pate said:

    Hi my name is John and I have had RCD2 for the last 7years. I no longer take azathioprine but I am still taking budesonide 15mg per day I have a marsh code 3c. Can someone please tell me what is the long term affect with people like myself and what will the outcome be. 

    Am I correct in saying that open-capsule  Budesonide Is the same as Entocort EC?

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    Scott Adams

    Sorry but we're not pharmacists here...you'd need to ask your doctor or pharmacist about this.

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  • About Me

    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     


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