Continue on Stelara or switch to Entyvio?

[Idiom]

After failing Remicade, I've been on Stelara for 3 month with no improvement.

My doctor has mentioned switching to Entyvio (Vedolizumab).

Is 3 months enough time to give Stelara a fair chance of working?

Entyvio is said to be a 'last resort' when other biologics have failed – is this true and why?

 

[ronroush7]

I would give the Stelara some more time.

 

[my little penguin]

Stelara takes a minimum of 6 months to work
You have only received the infusion loading dose so far
So not enough meds
Typically it’s given every 8 weeks after that as a shot
It can be given every 4 weeks as well

Entivyio is gut specific but takes up to 12 months to work
It also is not used too much with Crohns patients
Since it doesn’t work as well
Our GI only uses it for ulcerative colitis patients


Ds started Stelara in August
But GI stated they don’t even look to scope to check until well after 6 months

They just work slower


Good luck

 

[Guerrero]

I agree 3 months is not enough

 

[aypues]

was your Stelara level checked already? there is a new Prometheus test (Anser UST) that will do that. If low you may need a more frequent dose.

 

[Idiom]

was your Stelara level checked already? there is a new Prometheus test (Anser UST) that will do that. If low you may need a more frequent dose.

No I have not had a levels test yet. I will mention this.

I think the popular consensus from others is I need to give Stelara more time.
It's tough when you are feeling so unwell, but if it works I'll be so happy.

 

[aypues]

well my fecal calprotectin has shot up from 380 to 933 after switching to Stelara. iron and ferritin low again too. back to the drawing board it seems like...
will see Dr. in 2 weeks to figure out where to go from here.

 

[my little penguin]

Aypues
How long were you on Stelara(at least 6 months )?
And what dosing ?
90 mg every 8 weeks
Or 90 mg every 4 weeks ?

Have you added methotrexate to boost the Stelara?

Ds was increased to Stelara every 4 weeks

 

[ronroush7]

well my fecal calprotectin has shot up from 380 to 933 after switching to Stelara. iron and ferritin low again too. back to the drawing board it seems like...
will see Dr. in 2 weeks to figure out where to go from here.

Wishing you the best.

 

[aypues]

Aypues
How long were you on Stelara(at least 6 months )?
And what dosing ?
90 mg every 8 weeks
Or 90 mg every 4 weeks ?

Have you added methotrexate to boost the Stelara?

Ds was increased to Stelara every 4 weeks

Also, we got the Prometheus AnserUST test done - results were no antibodies and NO detectable Stelara in the blood at the trough 2 days before next dose. I did the initial loading dose 4 months ago, and have done 2 subQ injections - once every 8 weeks. I heard back from the nurse and we are probably going to redo the IV loading dose and move to 4 week subQ dosing. I am allergic to Methotrexate unfortunately.

 

[Karinbe]

Also, we got the Prometheus AnserUST test done - results were no antibodies and NO detectable Stelara in the blood at the trough 2 days before next dose. I did the initial loading dose 4 months ago, and have done 2 subQ injections - once every 8 weeks. I heard back from the nurse and we are probably going to redo the IV loading dose and move to 4 week subQ dosing. I am allergic to Methotrexate unfortunately.

Aypues, I have the same situation.. 5 months and not working. How did this end? Did Stelara work for you? After how long time?

 

[aypues]

Aypues, I have the same situation.. 5 months and not working. How did this end? Did Stelara work for you? After how long time?

no, not at all. I got much worse on it. Ended up back on Remicade then decided on surgery in Aug of 2019 (good timing, pre-covid). Now on Remicade and doing well with many dietary modifications. I am attaching the specific diet I follow from UCSF.

 

[CatLover63]

Hello, I've been reading your diet sheet for Crohn's Disease and it seems like a "healthy, high fibre, meat eating, wheat eating" diet.
The sort of diet a GP would recommend.
In my experience, eating too much fibre can cause bloating, stomach ache and diarrohea. Peeling and cooking vegetables, eating plain white rice and avoiding red meat and alcohol reduces flare ups.

 

[Karinbe]

I’m hospitalized. They will switch me to remicade tomorrow..

 

[aypues]

I’m hospitalized. They will switch me to remicade tomorrow..

If your albumin is low they may need to dose escalate you. They will probably check a level in a few months. I’m on double the dose (10mg/kg) every 6 weeks. Are they going to try combination therapy as well? Hope the infusion went well. Have you had any surgeries yet?

 

[aypues]

Hello, I've been reading your diet sheet for Crohn's Disease and it seems like a "healthy, high fibre, meat eating, wheat eating" diet.
The sort of diet a GP would recommend.
In my experience, eating too much fibre can cause bloating, stomach ache and diarrohea. Peeling and cooking vegetables, eating plain white rice and avoiding red meat and alcohol reduces flare ups.

I would characterize it as a “no highly processed food diet” lol. Fiber is good for your microbiome of course, and agree that vegetables should be fork tender until the gut heals, and certain fruits with skins should be avoided or peeled at first. I’ve had no issues with it and all my markers (calprotectin, hgb, iron, ferritin) rapidly improved once I fully implemented it which wasn’t quick, easy, or cheap. This wasn’t recommended by a lowly GP - the IBD team at UCSF compiled all the data on dietary interventions and formulated this guidance, meaning it actually works and has evidence to back it up. My friend is an IBD specialist at UCSD and posted it.

 

[Karinbe]

If your albumin is low they may need to dose escalate you. They will probably check a level in a few months. I’m on double the dose (10mg/kg) every 6 weeks. Are they going to try combination therapy as well? Hope the infusion went well. Have you had any surgeries yet?

They started remicade and imuran 125mg. Albumin is not very low. Colonoscopy showed mild inflammation, no surgery was needed

 

[aypues]

They started remicade and imuran 125mg. Albumin is not very low. Colonoscopy showed mild inflammation, no surgery was needed

Oh good! I could never tolerate imuran/6mp, made me feel really strange. My colonoscopies have always been pretty good, but I have small bowel disease. Have they done an MR Enterography to determine the extent of small bowel involvement?

 

[Karinbe]

Oh good! I could never tolerate imuran/6mp, made me feel really strange. My colonoscopies have always been pretty good, but I have small bowel disease. Have they done an MR Enterography to determine the extent of small bowel involvement?

MRI 5 months ago showed only inflamation in last 10cm of small bowel.

 

[aypues]

MRI 5 months ago showed only inflamation in last 10cm of small bowel.

Oh good. hopefully the Remicade with Imuran will work for you! For me the Remicade kicked in immediately, like next day.

I'd advise to completely eliminate the stabilizers/emulsifiers on the bottom of the UCSF list. They're in everything (like Ensure, sports drinks, anything processed) but it has really helped me to go thru my fridge and pantry and just throw them all away (or give to ppl without IBD). Now I only eat whole foods or minimally processed foods and check EVERY label to make sure the banned list ingredients are not present.

Hopefully you get out of the hospital soon. My step dad is a GI doc and calls it the "Red Zone". Lots of risk being hospitalized with infection/medical errors, hope you can go home soon to rest.

 

[Karinbe]

They are monitoring me. If everyting goes good in coming days, I will be out on Monday.