Entyvio stopped working after 7 years?

jkingfrt,

I don't take the same med.. (I'm on Remicade) but my understanding is that all of us can have any of our meds stop working at any time.

You may be having a flare. Have you noticed any symptoms? How often do you have blood work done? Does your disease severity reflect in your lab work or by symptoms/how you are feeling?

I'd ask my GI about the difference with the infusion vs the shot. Entyvio is my next medication if/when Remicade stops working. My Colorectal surgeon and GI have both said I will be using the infusion and not the shots. They thought that for me the infusions would work better... I didn't ask for clarification. I'll try to remember to ask when I see them next week.

Have you felt different at all? Had any trouble after eating certain foods? Had any cramping or other symptoms?

Clo

Clo and Flowers, thanks for the thoughts!

To answer your questions:

- "You may be having a flare. Have you noticed any symptoms? How often do you have blood work done? Does your disease severity reflect in your lab work or by symptoms/how you are feeling?" -- Nothing visible in terms of what I normally see/experience as a flare - normal stools, normal frequency. I get blood work done every 3 months and my last set of bloodwork that included CRP was a week ago and was normal. Severity, as of this week, doesn't seem to correlate with my lab work or how I am feeling.

- "Have you felt different at all? Had any trouble after eating certain foods? Had any cramping or other symptoms?" -- Nothing different than normal. Always had a crampy week here and there for 7 years. I've started drinking more coffee than I had ever in my life because it gave me issues but I've seemed to be just fine as long as I don't overdo it. That and sweets which I generally minimize week over week.

- "Has your dr ordered a test to check entyvio levels?" -- That is not part of my normal tests. I think he did order a test for it after this poor scope result so we'll see.

- "Can I ask why you switched from infusion to shots? Why were you on monthly infusions and for how long?" -- I switched to shots mostly for convenience. It was at my request. I was on monthly infusions because bi-monthly wasn't getting me there when I started Entyvio. I was only monthly infusions for about 6 years before I swtiched to weekly shots last year.

- "Could it be from something else and hence no ulcers? Or could it be just starting and that’s why you have no symptoms?" -- Could be meglovirus, we'll see after biopsies come back in a couple of weeks. Could be it is just starting....which makes me sad.

Ugh, that sounds upsetting.
Not sure if it’s relevant, but when I was on Entyvio and asked about shots instead of infusion, I was told shots were only recommended after achieving and maintaining remission via 8 week infusions for some time because the shots 'pack less punch' than the infusion.

UPDATE:

My new GI decided to move me back to Entyvio infusions in November with a reloading protocol (0, 2, 6 weeks).

Felt pretty stable until the middle of December and then started flaring.

Went through a battery of tests : Calprotectin was 1600, CRP was 16, blood work otherwise normal, no pathogens or infection, had emergency scope and showed moderate to severe infllammation on transverse colon with ascending normal and descending red but pretty much normal.

GI concluded that Entyvio was failing as a treatment and prescribed me Cortimant and Skyrizi.

I start my first Skyrizi dose on Jan 4.

I hope skyrizi helps you! My doctor’s office has good success with it. It was one of my options after simponi stopped working. Let us now how you feel after the first dose!

I hope Skyrizi works for you! Entyvio took a long time (over a year) to work for me and my GI and I discussed switching meds and his recommendation was Skyrizi. It does sound promising. Ultimately, I’m doing better now by going to Entyvio infusions every 4 weeks and implementing diet changes, but if Entyvio ever fails me, my back up plan will be Skyrizi. I’ll be curious to hear how it goes for you. Good luck!

I hope the Skyrizi works for you. There were some members in the crohns forum that have had success with it.

Good luck.