ENTYVIO Update

Hello,
I've had 3 loading doses of Entyvio and the 4th scheduled for a week from now. The last 5 weeks I have settled down to 1-2 semi-formed bms. no blood or mucus. I have introduced some new foods and remain OK. I still see seeds and sometimes bits of carrots ( when I eat raw ). All in all, the Entyvio Infusions have been working. I'm to remain on Mezavant and give my colon 6 months to heal before another colonoscopy. I have blood work and calprotectin tests next week.
Hopefully my counts will be down. I am very happy and hope to continue getting well. ☺️
Sassy

Congrats! These are all very positive signs!

I will have my 7 year Entyvio anniversary this month! No symptoms or side effects and my labs are all good too!

Good to hear good news about Entyvio--Just had my 14 wk infusion and looks like it is finally beginning
to work. This has been a really rough flare starting a year ago--the worst part being a severe anemia from blood loss until someone finally thought to take me off Eliquis!!!
What do you do to combat the side effects of extreme fatigue? I was sailing along pretty good for 85 yrs old--still riding my horse when this knocked my off my perch. Any suggestions for more energy?

85 yo female diagnosed 1992 hx of Remicade and Humera, mesalamine, steroids etc.

I'm into my 9th month on Entyvio. I only had 4 weeks of no symptoms then flared while vacationing. It's over 2 wks now, and I am extremely tired, my sinuses, ears, jaw, and throat have continually aching. I,m not sure if it's a side effect or result of entyvio infusions.
My GI says if Entyvio really does not work, Rinvoq could be tried. I don't like the possible side effects, only the fact it's a pill. Does Entyvio really take longer than 8 months to finally work? Or am I just a pessimist? Probably "yes" to both! Lol 😆

I was pretty much symptom free at four months on entyvio. I had a colonoscopy after 6 months or so (it was 7 years ago now so relying on spotty memory) of infusions and while visually my colon looked clear of inflammation, the pathology report showed microscopic inflammation yet. But I had no symptoms. The next colonoscopy (maybe 18 months after infusion start) showed zero inflammation. So yes healing can take a long time.

You say you’re tired and are having sinus issues but how is your GI system? Any cramping or urgency or diarrhea? I do recall having a lot of sinus drainage issues but no longer. It just seemed to make some sense to me that we have mucus membranes affected in our guts when we have UC so why wouldn’t it affect our sinus mucus membranes too? That’s just my own personal view.

Anyway I would judge by your GI symptoms on how effective entyvio is for you. In my experience I’ve had no side effects from entyvio.

Thanks so much for all the encouragement. Had 4th Entyvio infusion 7/19/24 and finally, no mucous. no blood, and near normal BMs. Energy up and blood work shows hemoglobin back up to near normal. Just in time, too. My GI wanted to add Rinvoc to the mix to speed up Entyvio, but sent me to another specialist to check me out and he said no to the Rinvoc--due to my age and heart issues. Was relieved to dodge that bullet.

Still have mild sinus issues and it's a little scary to be off my Eliquis but am investigating possibility of
having the Watchman gizmo installed in my heart to help protect me from stroke. If it ain't one thing
it's another! But I'm grateful for the improvements.

Thanks for the support
Michigoose

Hang in there sassy! If it’s not one thing it’s another right? Just take it easy and rest all you can! Wishing you good health soon!