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Diagnosed with Crohn's but having weird symptoms

Digestive Health | Last Active: Jul 31, 2023 | Replies (21)

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@jkellyjones . I've written some about my wife's Crohn's condition that started for her at about 45, nearly 20 years ago. For her it started with soars in her mouth & swelling of her lips and feet. Predisone was she was 1st put on which worked, but the side effects for her were not good. She was diagnosed having a fistula and had surgery for it soon after which really helped her out. She was on several of the earlier drugs that brought some help, but not until she was approved for Remicade did she get the results she hoped for. Although very expensive, our insurance covered most of her infusions since we met the deductible nearly after the 1st of the new year. Her Gastrologist was so pleased with the results that he became sure that she may not even have Crohn's anymore or perhaps never did? He recommended she have a special blood test that he told us was the "gold standard" for determining if she did. We agreed to go ahead with it and it came back negative and our initial reaction was of pure joy. He began weaning her off Remicade and within 6 months signs of Crohn's returned. She had a Colonoscopy and she was a mess! He was so sorrowful that he had put us through all of this and she was put back on larger doses of Remicade. The Remicade had worked so well that it had fully masked even the "gold standard" blood test.
She continue's her Remicade infusions every 8 weeks and for the most part are doing very well. She has been experiencing low energy mostly in the early evenings and some degree of what she refers to as brain fog. All in all things seem under control, but I do have concerns about the long time use of Remicade, but the results have given her the quality of life that anyone would hope for. All our best to you this Christmas season.

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Replies to "@jkellyjones . I've written some about my wife's Crohn's condition that started for her at about..."

Kelly: Can you please tell me what Medigap Insurance you have that covers infusions? Do they charge you for the medication which if so expensive? My Husband has been diagnosed with Crohn's and they want to do entivyo infusions, but our Part D Insurance (Prescription) Insurance costs $3500 for first treatment and $2,000 for the Second and Third Treatment. we applied for help through Taekada but were turned down. We have AARP, United Healthcare as Medigap.