Entyvio update

Hey guys, been a while since I've posted any updates.

ITw been about 8 months since I started entyvio. Things are definetly better but not great still. I just had a sig done last week to see what's going on so I have a little more info.

Before we started entyvio doc said 90% of my colon was inflamed and the inflammation severity was moderate to severe. Now He says it's about 40% and mild to moderate. I still feel like crap a lot of the time but sometimes I feel ok. He said what they've been seeing is entyvio can continue to improve for a year....so there's stilk s chance I'll get better. We decided to start a short one month pred round to see if it will help heal faster and see if it comes back when I stop taking it.

If it doesn't work it's back to the surgery discussion....I told myself I'm not going past this year with this disease....hopefully entyvio does do its thing over the next few months...but If not this thing is coming out unfortunately.

i hope improvement continues. i am puzzled that a sig scope is used for pancolitis. there could be parts of the colon with even more healing.

Keep in mind that prednisone slows down the body's healing processes, so while you may get symptomatic relief, taking the pred may cause you to take longer to get into remission

UCHater said...
Aren't steroids also a powerful anti inflammatory? So wouldn't they help reduce inflammation quicker and hopefully entyvio prevents it from coming back?

Thats the hope with this course of action Im assuming. It really depends on your situation though. If youve been inflamed a long time and have considerable damage, then when you come off prednisone you probably wouldnt have healed enough to remain in remission. Like with everything else related to this disease, its a guessing game

Glad for your update, think of you often. Also glad you are giving it your all, if you do go to the next step, you know you have given it lots of chances. This disease baffles me. My d has never been told she has severe disease. Even colonoscopies/ sigmoid's scopes at the end or the final pathologies-- said words like limited or medium or confined or moderate words that suggested it wasn't too bad. Further frustrating the symptoms that didn't align with pathology. Bad for you is plain ole bad. Hope the next weeks bring relief.

UCHater, I think it's great you are healing. I'm 5 months in and doing pretty well. The last week or so before my next infusion starts to feel a bit dicey. It tends to be a problem with urgency. I have (had) pancolitis. I remember my doctor saying UC always starts in the rectum and wonder if that's simply the last fire to put out. I asked about getting my doses closer together. She wants to hold off and see if my body can continue to get a handle on things the longer I'm on Entyvio. I do have a uceris prescription I can use that final week if need be. I haven't had a scope since beginning Entyvio. My labs are beautiful and I have zero abdominal pain. My GI is going to rely on my Calprotectin test to measure inflammation in my colon. She said it's not the best measure for Crohn's, but pretty good for those of us with UC. It will save me from frequent colonoscopies. I feel well enough that it's a plan I'm digging.

Keep healing! I'm so there with you when my kids have any type of tummy, D or C issues. My 8 year old daughter has had tummy and constipation issues since she went full time in school 3 years ago. I keep hoping it's a hydration issue, because schools don't push water, and the fact she is finicky about fruits and veggies. My big fear is she has Crohn's. I've taken her to several doctors who suggest all sorts of ridiculous things, so I'm waiting it out an challenging myself to relax.