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dval (@dval)

Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: 5 days ago | Replies (28)

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@msgtrebholtz

I know it hasn't been very long, but how are the new meds going?

Please let me know if there is anything else I can do for you. Keep your chin up!

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Replies to "I know it hasn't been very long, but how are the new meds going? Please let..."

Thanks so much for checking in…. I am cautiously optimistic, but know how quickly this can go south. I have tapered down to 15 mg daily prednisone; plan to go to 10 today or tomorrow. The Stelara most likely is working, as there is much less blood, formed stool and frequency is 2-3 times daily (big change from 16+). I am watching, recording and plan to see another colorectal surgeon, to be prepared. The fact that I stopped responding to Entyvio makes it more likely that I will stop responding to other biologics. I am giving the Stelara a chance, and my understanding is that if I stop responding to that, Remicade would be next. If the side effects are too severe, I know the surgery would be the next step. These biologics have different mechanisms of action, but all have dangerous side effects! The thought of not taking biologics is appealing. I hate that I am immuno-compromised, especially in this Covid world. This is a horrible disease and I know in my heart that I have done everything possible to treat it. The plant based diet certainly helps, but when it’s this severe, there’s nothing more you can do…. I have come to terms with the severity of this chronic illness and also that the surgery would represent freedom. It would free me from the drugs and their side effects and from being terrified to be away from a bathroom. I appreciate your willingness to share your experience! I hope you’re well and enjoying your life! Sometimes we have to bite the bullet and make tough decisions that are right for us because we’re living this hell…. Thank you again; I will keep you posted!

Well, the Stelara was a waste of time. It actually made the symptoms worse!! So now I’m back on oral prednisone (60 mg daily) and awaiting insurance authorization for Remicade. I have wasted 9 weeks of my life that I can’t get back…. Bloody diarrhea 14-18 times a day and all night. I am miserable and doing battle with my GI doc, as he wants me back in the hospital again to do the steroids via IV. I panicked because I can’t make the 30-40 minute trip without bathroom accidents and then you have to go through the ER and be in that hell 8-10 hours. WTF. I can’t take anymore! I actually called the colorectal surgeon we know and trust and will talk to him again next week. I don’t want anything fancy, just a basic ostomy. I’ve read there are too many issues with the J pouch and pouchitis and I just want this to be over. I can’t do this again. I have been through enough hell the past few years. I don’t know if I will make it to the time the Remicade is approved or if I even want to try it. I hear there’s a new oral drug on the market getting approved in a few weeks made by BMS. I have hope for a day or so and then I am so sick and tired and exhausted from being in the bathroom all day and night I just want this over. At what point did you know it was time to just have everything removed and how did you accept it and get through the surgery, the recovery? This disease has ruined my life and robbed my family of so much!!! It has changed who I am. I was an active, outgoing, productive human being and there are days I feel too useless to live. Yes, I have a therapist, but if you’re not living this hell, you just don’t get it….