If I still have something showing up on my video capsule does this mean Skyrizi is not working?

[prettyflowers]

Hello. I started Skyrizi in April 2023 and had a video capsule endoscopy done in November 2023 (just last week) to see if we could determine if the biologic was working.

My November results (last week after 8 months of Skyrizi) revealed:
A few medium sized faint mucosal red spots were found in the mid small bowel. A single small whitish plaque vs mucosal break was found in the distal small bowel.

Also, this was not my first video capsule endoscopy. My first was August 2022 which indicated: normal ileum and multiple areas of small punctate ulcerations in the jejunum.

Question 1.
Since a "single small whitish plaque vs mucosal break was found in the distal small bowel" was discovered, does this mean Skyrizi is not working?

Question 2.
Is that a new finding if I'm comparing it to my August 2022 video capsule endoscopy? Because it doesn't read to me like it was there beforehand.

I have not heard from my doctor. I only saw the report in my patient portal. Of course I plan to ask him these questions but until I do, I was hoping someone here might be able to ease my mind that none of this means I'm failing Skyrizi. I guess I'm worried that 8 months of a biologic would have healed everything if it was going to work for me. It was my understanding that my Crohn's was perceived as mild (or beginning stages) so I would have thought that 8 months might be enough to know.

Also, my physical symptoms have improved. However, I am not where I was PRE-Crohn's.

Thanks for any input!

 

[nofun]

I have a similar situation, but on Entyvio. My physical symptoms improved a lot, but colonoscopy did not show any healing. I decided to stay on Entyvio regardless as I had no side effects and really enjoyed the feeling of being healthy.
I have been taking it for 2+ years, but unfortunately my symptoms deteriorated. I have an appointment later this week to discuss what to do next. Maybe it was a mistake to keep taking medication that didn't show any healing? Please let us know what your doc will recommend.

 

[prettyflowers]

I have a similar situation, but on Entyvio. My physical symptoms improved a lot, but colonoscopy did not show any healing. I decided to stay on Entyvio regardless as I had no side effects and really enjoyed the feeling of being healthy.
I have been taking it for 2+ years, but unfortunately my symptoms deteriorated. I have an appointment later this week to discuss what to do next. Maybe it was a mistake to keep taking medication that didn't show any healing? Please let us know what your doc will recommend.

I'm sorry to hear that your symptoms have deteriorated. I actually have had some healing. I had a push enteroscopy last week and comparing it to the one I had a year earlier (before Skyrizi), there was improvement. However, the video capsule endoscopy still shows mucosal spots and a mucosal break. I'm hoping it will heal fully with continued use of Skyrizi but I don't really know what to expect. I will be interested in hearing what my doctor thinks. Speaking of, I hope your appointment goes well and that you get a good recommendation on something that will work for you.

 

[Scipio]

It sounds like you have achieved partial but not quite full remission. The skyrizi has knocked the disease down a lot, but the capsule camera endoscopy indicates there is still low residual disease.

This is much the same situation I am in with Stelara. I've been on it for six years now, and my life is pretty much back to normal symptom-wise, but colonoscopy shows still a lingering low level of inflammation in the terminal ileum. And as long as it doesn't get any worse, I'm fine with that.

So I wouldn't say that skyrizi "isn't working" so much as it is partially working - showing improvement but not quite strong enough to achieve complete remission.

 

[prettyflowers]

It sounds like you have achieved partial but not quite full remission. The skyrizi has knocked the disease down a lot, but the capsule camera endoscopy indicates there is still low residual disease.

This is much the same situation I am in with Stelara. I've been on it for six years now, and my life is pretty much back to normal symptom-wise, but colonoscopy shows still a lingering low level of inflammation in the terminal ileum. And as long as it doesn't get any worse, I'm fine with that.

So I wouldn't say that skyrizi "isn't working" so much as it is partially working - showing improvement but not quite strong enough to achieve complete remission.

I'm so glad to hear from you again, you have commented on another of my concerns before. I am encouraged to hear that Stelara seems to work for you to a degree after all these years. This is exactly what I was curious about with Skyrizi so I'm happy you shared your situation.

If I can continue to benefit from Skyrizi enough to not cause serious issues then I will be happy, especially if I can continue that way for years.

I'm wondering if I am being overly optimistic in thinking that I will still continue to get further healing from Skyrizi? I have two more injections (December and February) before I hit the one year mark. Or, have I maxed out on the benefit I will see from Skyrizi? It's hard to get answers to questions like this. Maybe because it's so different for everyone. Thank you again for replying!