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Patients Ulcerative colitis

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Member Carenity
Posted on
I am a 62 year old female, diagnosed with UC less than 2 years ago. I had been on oral mesalamine, which worked for 3 months until I developed acute pancreatitis. Prior to that, I had been prescribed Canasa (suppositories), Uceris rectal foam, hydrocortisone (oral and rectal), none of which worked. GI doc is pushing Entyvio and I am terrified of possible side effects of biologics in general, especially at my age. I think I need my immune system to be in good working order. Prior to this diagnosis, I was in excellent health, never smoked, do not drink, eat a healthy diet and exercise regularly. I am about to make an appointment with integrative medicine doctors to try acupuncture and herbal treatments like aloe vera and Boswellia? Has anyone been on Entyvio or tried more natural things and have they helped? The fact that I developed pancreatitis from 4.8 G of mesalamine daily was frightening and GI doc said that was a rare side effect. And now, I am in a wicked, bloody flare, losing weight, and the Uceris rectal foam that GI doc prescribed this time is doing NOTHING! This is a horrible debilitating disease and I just want my life back. Has anyone had good or bad results with their UC treatment? Thank you so much!

Beginning of the discussion - 7/24/19

Has anyone been in remission with UC
Member Carenity
Posted on

Hi @Hidden username‍ I have never tried Entyvio, but I have read some interesting stuff on Stem Cells and UC. How long have you been on mesalamine? Has your doctor considered changing the medication? I have heard of people developing anti-bodies over time to treatments.

Has anyone been in remission with UC
Member Carenity • Community manager
Posted on

@Hidden username‍ I know you are more looking for alternative methods of treatments or natural methods of treatment, but I wanted to let you know about a fairly new treatment called Xelijanz. You can read about here in this article. Xeljanz was approved by the FDA in June of 2018. In the placebo-controlled trials, 10 mg of Xeljanz given twice daily induced remission in 17 to 18 percent of patients by week eight. Among patients who achieved remission after 8 weeks of treatment, 35 percent and 47 percent achieved sustained corticosteroid-free remission when treated with 5 mg and 10 mg, respectively.

Has anyone been in remission with UC
Member Carenity
Posted on

Thanks! I am currently taking the fairly new biologic, Entyvio, that has similar clinical results. I know that Xeljanx is taken orally and I'm sure is much easier than these infusions, but my doctor has recommended Entyvio, as it has a slightly higher safety profile. Of course, all of these drugs have serious side effects and must be monitored constantly.  We as patients are afraid, but have no choice when the UC is this severe.  I have also been advised to see a colorectal surgeon because if these newer treatments do not work, I will be facing a colectomy. We have an appointment with one next week.

As far as natural alternative methods, I started a plant based diet (no animal products at all) about a month ago.  It is too soon to tell if this is what has improved my symptoms but I believe it is clinically relevant.  I was in the bathroom 15 times a day, every single time, bloody diarrhea.  For the past 12 days, the bathroom visits have decreased to 1-3 daily and there has been NO blood or diarrhea!  I was put on prednisone (30 mg daily) 4 weeks ago, which I have been tapering off (5 mg every 5 days) and I started the loading doses of the Entyvio 15 days ago, but I don't believe it works that quickly.  I am carefully monitoring my symptoms and hope there is more to the plant based diet.  When the GI doc told me the UC had become "fulminant" I knew I had to act quickly and accept the hard core meds. It has been a long struggle, but I am determined to find the safest method of treatment to get this into remission.  This disease has robbed me of my quality of life and I have indeed, had enough... Thank you again.  Has anyone else had experience with Entyvio or a plant based diet?