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Has anyone with UC stopped responding to Entyvio?
Digestive Health | Last Active: Jul 7 12:41pm | Replies (60)Comment receiving replies
I understand and I'm so sorry! I have UC (pancolitis) and had been in remission on Entyvio for 13 months. Last October, the day after my annual flu shot, I started to bleed. The past year has been HELL!! The flare just won't end!! I have been hospitalized 6 times, have tried and failed Stelara, have been on and off prednisone several times (60 mg daily, then the taper by 5 mg every week). I am currently on Remicade, which has improved things, but after the Covid vaccines, I ended up back in the hospital for several days!! Currently, I am on Remicade every 4 weeks and still on prednisone, and struggling to maintain 100 pounds. The only thing left for me is Zeljanx, and in order for me to take that, I must have a two dose shingles vaccination, because shingles is a side effect. I am so disgusted with this debilitating, horrible disease that has taken so much away from my family and me.... Right now, I am down to 15 mg prednisone daily and waiting for approval from Insurance for Xeljanx. I will be 64 next week, have always been very healthy, until UC - at the age of 60! I have also scheduled a proctocolectomy for next month in case things get worse or that I am unable to take the Xeljanx. This has been a roller coaster of hell and I cannot keep doing this.... I try to focus on benefits vs. risks with all these drugs, but I need some quality of life!! The drugs and biologics just target the inflammation; why can't they just alter the gut microbiota and cure this??????
Replies to "I understand and I'm so sorry! I have UC (pancolitis) and had been in remission on..."
I hear your story and share a similar situation. I am 61 and have always been very healthy and active. About 18 months ago, I ended up in the hospital with pancolitis and since then diagnosed with Ulcerative Colitis. I believe what triggered my UC is a C diff infection, which I ended up having twice during this time. Since then it seems that my immune system has been in overdrive and does not want to shut off. My calprotectin levels have been very high (latest was 1586 and when I was in the hospital it was 2,635).
I started out on the Meslamine last year which only made me feel worse. My doctor placed me on Entyvio infusions this past February, but this is not working for me and she is now recommending Remicade. In between, the only thing that has helped with my symptoms is the Prednisone and we both know that this is only a temporary bridge. I'm really questioning whether another biologic is going to make a difference and truly understand the frustration of how long it takes to go through the process and once again, have months pass by with feeling like you are missing out on life. I do wonder if it makes sense to look at the gut microbiota and possibly surgery if there is too much damage. I am just starting to try the Microbiome Labs products for repairing the gut (a nurse who has Crohn's recommended it and swears by it). I will keep you posted if you are interested. I have always been conscientious about nutrition but like you, I am less than 100 pounds and it's been difficult to keep the weight on for the past year.
As a side note, I do feel that I am predestined for autoimmune. I had graves disease 30 years ago, but after having my thyroid dissolved 30 years ago and taking Synthroid since, I have had zero issues.
My feeling based on keeping track of my own body is that something triggers my immune system to go into overdrive and then for some reason, it does not want to shut off once the organ is damaged. First my thyroid and now this time, it was an infection in my gut that created havoc in my colon. This is totally my own opinion based on what I have experienced, but wonder if others feel the same way.
Would be interested to hear more about your experience and the direction that you are taking with your treatment options.
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Dval. I am so very sorry for your troubles. Yes, this is the very worst situation. I am 72 years old and have had UC since I was 18. I have always been on a restricted food list and as a result suffer from poor health. I don't eat fruit, veggies, dairy, or fried foods. I have been hospitalized several times when I was younger, but I have found that since I retired I am suffering a little less. The stress of a time clock and noise and activity seemed to increase symptoms. Do you find this to be so? I am hoping you get some relief shortly.