Failing Entyvio?

Hello - I have followed this forum for years after being diagnosed with Crohn’s in 2016. I have not posted much because up until last year, my experience with the disease has been unremarkable and very well controlled by taking Imuran (azathioprine).

Things changed last June when I ended up in the ER twice, both times being admitted for a small bowel obstruction. CT scans confirmed ileal inflammation. The consensus of the GI in the hospital and my own GI was that Imuran was not working anymore and I should switch to a biologic. Started a prednisone taper while in the hospital and then I had a colonoscopy in July, which was pretty uninformative because the active inflammation was beyond the reach of the colonoscopy. I was relieved that my GI switched me from prednisone to Entocort, and he also recommended for me to start Entyvio. Started the induction phase in late August and finished the budesonide taper in September and everything seemed ok. I started having some mild discomfort in December and didn’t really think much about it. I strained an abdominal muscle in January and was dealing with that (or so I thought) for about 5 weeks until I was having so much pain, and my fever spiked up to 103.5, leading me back to the ER. The CT scan revealed active inflammation in the ileum (along with a minor pleural effusion). So, back to my GI office, first meeting with the PA . She ordered tests for inflammatory markers and C. Diff. The results from the markers shocked me- CRP was 301 and the fecal calprotectin was 640. For reference, last year during the SBO’s, those markers were 45 (crp) and 252 (calprotectin). Given those results the doc started me back on budesonide taper and ordered to have my trough levels checked at my next infusion. The results of those tests showed that I did not have antibodies for the meds but the medication levels were too low and I should start having infusions every thirty days instead of sixty days. So that has happened for the last three months. But I still feel bad even with eating a low residue diet and I now am starting to have kinda random fevers, which I have learned over the last year is also a pretty reliable inflammation marker. I think that the Entyvio is just not working at all.

I just had my latest infusion this morning and have an appointment with my GI at the end of this month and I would love to hear from the collective wisdom of this group about specific questions or topics that I should discuss with him or any other comments or support anyone can offer.

Thanks!

Curtis

beave

Thanks for responding - that is helpful. I guess what I should have said was that for years the Crohn’s ‘seemed’ to be under control, at least symptomatically.

One of the frustrating things about this disease is trying to figure out if a treatment is actually working. It’s obvious when things are not going well, but there aren’t any tests to say ‘everything is fine.’ Imaging and scopes give some indication but it still comes down to how you feel and that may not warn you of an impending crash until you’re picking through the wreckage.

I always felt lucky that the course of my disease has been relatively uneventful, especially reading through what so many others have written in the forums about their own experiences with it. I guess I have gone from the on-deck circle into the batter’s box. Time to play ball!!

I second beave's opinion that anti-TNF is preferable treatment. I am current on Humira for my small bowel Crohn's Disease. I heard Remicade and Humira are the main options for anti-TNF.

I did some research and found that azathioprine can do more harm to your body over the long term than anti-TNF. Azathioprine is more likely to increase the risk of cancer than anti-TNF treatment. I would not take azathioprine.

I was on Imuran while on Remicade & Humira. My dr said it gave the meds a bit of a boost & helped slow down the potential of developing antibodies. Even today, some people still take Imuran only to treat crohns or UC with success. I never had an issue with it, just did my labs.

Regarding combo therapy with an anti-TNF like Remicade or Humira along with imuran/6mp, the combination is a little more effective than anti-TNF monotherapy. It's not a huge difference but it can matter for certain people.

Perhaps the more important benefit of the combo therapy is that it reduces the odds of the patient developing antibodies to the anti-TNF medication. Back when Remicade and Humira were about the only available treatment options, that was an big deal. But now, with so many options (not just anti-TNFs but Entyvio, Stelara, Skyrizi, Rinvoq, and countless others coming down the pipeline), it's not so critical to do everything possible to make sure a patient can stay on an anti-TNF as long as they can.

The risks of combo therapy are the mild increase risk of opportunistic infections, and more importantly the increased risk of skin cancer and lymphoma.

Monotherapy with imuran/6mp has fallen out of favor because they're not as effective as newer meds, and they have higher risks of side effects (the aforementioned skin cancer and lymphoma being two main ones).

So, 15 years ago, if a person was to start an anti-TNF, odds were pretty high that they'd also start imuran/6mp.

Nowadays, the thinking is a bit different. Some doctors only prescribe combo therapy for those with really aggressive disease. Others don't prescribe it at all. Others do it for the first year or so, then remove the imuran/6mp and continue with anti-TNF monotherapy.

With the drugs like Entyvio, Stelara, Skyrizi, Rinvoq, etc, such combo therapy with imuran/6mp is rarely used.

Anyway, good luck with your upcoming visits and decisions and keep us posted.

Quick update - I saw the NP at my gastro’s office last Friday. She pretty much confirmed what you all have been telling me here. She ordered labs to get updated inflammatory markers and a CT enterograph. The CRP number was down significantly from 301 to 43. Still high but not crazy so that’s good, right? Maybe not because the fecal calprotectin result just showed up today and is up from 640 to 694. Ouch!

CT scan was done yesterday and once they get those results back, she will discuss with my doc to see what the next steps will be. We have discussed going to either an anti-TNF or Skyrizi but at least initially we were going to recheck trough levels in two weeks at my next Entyvio infusion but I suspect that if the scan confirms significant inflammation, we’ll initiate the changeover to the new medication asap.

Beave - if I didn’t know better, I might think you are the NP I saw last week because everything she told me was exactly what you had told me here. It was nice to have had a preview of the discussion with her and it gave me confidence in what she was saying because it was consistent with the info I have been getting here.

Ok - just talked to doc on the phone and CT scan confirmed worsening inflammation so I will start prednisone immediately, stop budesonide, and have an appointment on 6/4 with him to discuss whether to switch to skyrizi or infliximab. Entyvio is now in the rear view mirror.

I’ll update again when I get more info. Thanks to everyone!

Curtis

Post Edited (CurtisW) : 5/23/2024 12:33:00 PM (GMT-8)

Entyvio was the first biologic for me. I had been on azathioprine for seven years and then went directly to Entyvio after a couple of small bowel obstructions last year. Rinvoq was briefly mentioned in my discussion with the NP at my last appointment but I will see the doctor next week and get his opinion on whether to switch now to either an anti-tnf like infliximab or go with Skyrizi, or maybe Rinvoq. Stelara was also mentioned by the NP but she said they have had more difficulty dealing with insurance on that than the other options.

Thanks again for the info !

Advertising, ugghhh! The drug companies must be making a ton of money from biologics just based on the sheer volume of ads for them. I would think I am being targeted by them but they’re everywhere, all the time, eeesshh.

My feeling at this point is that I’m leaning towards the anti-TNF’s. I am open to Skyrizi if my doctor wants to make the case for it, but we’ll see what he thinks. The risk for skin cancer is something that azathioprine also carried and I see a dermatologist annually to screen for that. Hopefully that can be caught early if it develops. The lupus- like reaction is concerning but the track record for remicade is also pretty hard to ignore. It just seems like a good idea to go ahead and try and get as much time as possible from it now and keep the others in reserve in case it doesn’t work or if/when it eventually stops working.

Thanks!

If you had started infliximab from the very beginning, i.e. 2016, could the surgery be avoided?

Are the strictures in your small bowel fibrosis or mostly from inflammation? If the former, then you may need a resection surgery. If the later, will infliximab make the strictures improve a lot? But since it has been 8 years, scar tissues might be present there.

You're faced with a very difficult decision to say the least. There certainly are some IBDer's that have no regrets opting for the surgery route. I've posted here previously about a friend that had many years of remission post resection with no meds!! Have lost touch, so no idea how that panned out now.

Good luck with your decision. Hope you get the right guidance and it all works out for you.

That sounds like an entirely reasonable approach. Good luck with the surgery and keep us updated.