Moving on from Entyvio

Hi,
I'm 55, have severe/moderate UC involving my whole colon. My GI says I did heal some with my 2+ years on Entyvio but all my tests, blood work and symptoms are saying it has stopped working. So now he's suggested three meds to try: Remicade, Stelara or Xeljanz. I am realistic in that I know this uncontrolled UC is wreaking havoc on my body and I'd love to live for awhile without being ten feet from a toilet so I'm going to pick one - I would appreciate some answers to a couple of questions as well as any insights anyone cares to offer.

I started with Entyvio because I really felt apprehensive about Remicade which was the only other drug for me to choose from three years ago. I'm still reluctant but I know it's probably better than nothing at this point. Stelara is a relatively new treatment for UC and I wonder, does anyone know why it was approved for UC so long after it was approved for Crohn's?

At first Xeljanz sounded wonderful (some people finding relief after 3 days!) but then I read about the black box warnings and I'm thinking maybe I'll stick to either Remicade or Stelara just because they have been used longer. I just have so much anxiety about choosing because it feels like Russian roulette to me. I know that anxiety is also not good for my UC (maybe I should get treatment for that too?)Does CBD oil work for anxiety?

I won't be starting anything till May at the earliest because of Covid-19 but it would be helpful to know how others made a choice. I have osteoporosis and 2 other auto immune issues - one called lichen sclerosus and one called erosive oral lichen planus. I also react to the sun now with an itchy rash. Yes, my immune system is upset!

I will probably be starting Stelara soon as well. My doctor told me you will know very quickly with Stelara whether it is working or not, ie. within a month at the most. I would be surprised if your insurance would let you try Stelara before Remicade though.

i was in same shoes

i think the next will be xeljanz. Or if you did not try the remicade till now make a trial with it.
i am on xeljanz now, this not working very well for me. i started 3 weeks ago. my doctor told me wait toll week 8.

Stellara is very ineffective for colitis . it is working approx 20% of colitis patient.

You can try FMT .
no problem with remicade

Stelara has done wonders for my fistulating crohns. If I recall it doesn’t work as well for UC.

I’d 100% try xeljanz first since it’s a pill & uncomplicated In complicated times. You may not have to wait for May tp start.

As far as skin issues see if you can get on IVIG. That will help & boost your immune system too. It will be a challenge to get it though so you need a good doc who will advocate for you.

Hope you get some relief soon.

For me Xeljanz has been the wonder drug it started working on day 3 and has been great .
Been on it over a year now and its like not having UC.
Good luck in what ever direction you take, we are all so different in what works for us.
Prev on Humira and Entivio

I was supposed to start Xeljanz last November and chickened out because of the side effects and opted for surgery instead, fast forward to now, I don't know when my surgery will be because of Covid and so I'm a week into taking the tablets and currently kicking myself for not starting sooner, especially since my flare actually got worse from December onwards and I've had an awful few months that could have been avoided

Not near remission yet but many improvements already, more noticeable than any of the medications I've ever taken and I've been in constant flare for 4 years (asacol, azathioprine, humira & entivyo)

Remicade is also a good option, I'd recommend Xeljanz for the time we're in at the moment, if you were to catch anything serious you have the option to stop taking them for a little while until you're back to normal (doctor permitting)

I was on Entyvio for almost a year and it didn’t help me at all. I even increased my infusion frequency. After that I went on Remicade. I had fast results but by the first 8 week maintenance dose, my body had developed antibodies which gave me 2 anaphylactic reactions. I just started Stelara April 2nd so we’ll see what my body decides to do with this drug....wishing you all the best on this medication journey. It can be scary and frustrating!

Hi, I am afraid I might be in the same situation as you. Entyvio for almost a year, just bumped up to infusions every four weeks. My intuition is to try Remicade next because it's been around for so long, but I think any of the options might be good ones. It's hard to step away from a biologic and try a new one. Best wishes to you!