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Double-biologic therapy with Entyvio to control extra-intestinal symptoms

I doubt this will get many if any responses since it's uncommon, but does anyone have experience using an additional biologic with Entvyio? I'm on it now and it's kept my gut in check for years but my extra-intestinal symptoms, mainly arthritis and iritis, have been flaring for about a year and half despite, prednisone, imuran, methotrexate and tarcrolimus.

My in-town GI tried to prescribe Humira in addition to Entvyio since I had been on it before and it controlled EM but not gut symptoms, but insurance denied it. I went to another GI at a teaching hospital who suggested Cimzia with Entyvio since it's also a TNF-a blocker but I won't have built up anti-bodies to it, and she somehow got insurance to approve it, so I'll be starting Cimzia shortly.

I'm nervous being on 2 biologics, but at this point, I don't know if anything else will work. Just hoping to find other people that may be in a similar boat so that I don't feel so alone in treatment.

I'm also wondering about Cimzia, but it seems like nobody is on it and the sub-forum hasn't been posted to since 2018.
 

my little penguin

Moderator
Staff member
To put it simply Entyvio does not help arthritis period for some it makes arthritis worse
They wouldn’t put Ds in it for that reason
He is on Stelara (il12/il23) to control crohns AND arthritis
He also takes a second biologic for auto inflammatory condition

Surprised they are trying Cimzia
We were told Cimzia does not work for arthritis
You said Gi ordered it where is the Rheumo on this ??


Ds has been on two biologics for a few years no major issues

Good luck
 
I’ve got some experience what are your questions?
Hi Kitz,

What other biologic are you on with a Entyvio, and how long did it take to resolve your extra-intestinal manifestations with it? Have you have any side effects? And how long have you been on both?
 
To put it simply Entyvio does not help arthritis period for some it makes arthritis worse
They wouldn’t put Ds in it for that reason
He is on Stelara (il12/il23) to control crohns AND arthritis
He also takes a second biologic for auto inflammatory condition

Surprised they are trying Cimzia
We were told Cimzia does not work for arthritis
You said Gi ordered it where is the Rheumo on this ??


Ds has been on two biologics for a few years no major issues

Good luck
How is your son’s arthritis with Stelara? My GI said Stelara might be an option but it was more of a gut-specific biologic, not as gut specific as Entyvio, but she was concerned if I tried it for EM’s that it may not work.

Hmm, where did you hear Cimzia doesn’t work for arthritis? I thought since it’s an anti-TNF like Remicade and Humira which both helped my arthritis, that it would work similarly. My GI thought to do Cimzia since my extra-intestinal symptoms responded to Remicade and Humira, and I won’t have any antibodies to Cimzia since I’ve never taken it before.

Rheumatologist is on board now. Originally she said no to two biologics since she feared life-threatening infections, but I think that was with two biologics that were both systemic unlike Entyvio.

Has your son done well on two biologics? Has he had any side effects?
 

my little penguin

Moderator
Staff member
Stelara is not gut specific at all .
It was designed for psoriasis and psoriatic arthritis (that dose is 45 mg every 12 weeks )
Later was tested for crohns (crohns dose is 90 mg every 4-12 weeks )
Ds takes 90 mg every 4 weeks
It has less than 1 % chance of infection which is very low compared to anti tnf
Per infectious disease doc

Both the rheumatologist and Gi that Ds was seeing for over 9 years told us - due to arthritis and crohns
Entivyio was not an option
Given it can make arthritis worse
And said after you have been on humira abd remicade your body likely won’t respond to another anti tnf since it’s been flooded with it for so long
Also they don’t even use Cimzia at all for jia patients (remicade humira orencia etc...) not Cimzia

Once we raised Ds to 90 mg every 4 weeks his arthritis had been very good
No sign of active arthritis
And fecal cal below 15 so really good as well as normal bloodwork


He was on two biologics (humira plus the other one for a few years ) humira stopped working and then switched to Stelara plus another biologic
No side effects

Things are mostly under control
Crohns /arthritis is under control the auto inflammatory side is tricky ...

So close to 3-4 years on two biologics
 
While I can't speak specifically to arthritis, in my experience Stelara will work for extra-intestinal manifestations. My GI put me on Stelara when I came down with pericarditis as a Crohn's extra-intestinal manifestation. It's been working pretty well for nearly two years now. No flares of the disease in any location since starting Stelara.
 
Stelara entyvio both at q4 dosing multiple loading doses about 8 months stelara 4 entyvio I don’t have any e.i.m so not sure. No side effects. No infections. Also just hit about 13 months of steroids and let’s see 100mg 6mp.
 
While I can't speak specifically to arthritis, in my experience Stelara will work for extra-intestinal manifestations. My GI put me on Stelara when I came down with pericarditis as a Crohn's extra-intestinal manifestation. It's been working pretty well for nearly two years now. No flares of the disease in any location since starting Stelara.
Yeah, this new GI that told me about Stelara being more gut specific was the first I had heard that. My other GI and rheumatologist both suggested Stelara as an alternative to Entyvio, but this new GI said she would add Stelara to Entyvio as an option. She mentioned something about Stelara’s action being along the same inflammatory pathway as the anti-TNFs just many steps before the TNF. I believe that’s what she said, so she thought if I tried Stelara alone it may not work for my gut since the anti-TNFs didn’t work for my gut.

I’m glad the Stelara is working for your son’s gut and arthritis. Ideally it’d be nice if I could do just one, but I’m afraid to get off Entyvio since it’s the only thing that has worked long term for my gut. I do like how you said Stelara has a very low infection rate. I wish I knew of people who responded to Entyvio and whose gut didn’t respond to anti-TNF had a good response to Stelara. If Cimzia doesn’t work for my arthritis I’ll probably try Stelara.

Did your son ever try Imuran or Methotrexate for his arthritis, and if so, did he respond? I had a good 3 years on Entyvio and Imuran with only day or two flares of arthritis maybe 2 times a year. I did have iritis a couple times a year too which I thought was pink eye, but they always went away in a few weeks without any other intervention. I do wonder what other people with EIM’s do if on Entyvio.

The only thing with stelara is I think it’s unknown if it works for iritis, at least that’s what my 2nd rheumatologist said. Maybe that’s changed though.
 
Yeah, this new GI that told me about Stelara being more gut specific was the first I had heard that. My other GI and rheumatologist both suggested Stelara as an alternative to Entyvio, but this new GI said she would add Stelara to Entyvio as an option. She mentioned something about Stelara’s action being along the same inflammatory pathway as the anti-TNFs just many steps before the TNF. I believe that’s what she said, so she thought if I tried Stelara alone it may not work for my gut since the anti-TNFs didn’t work for my gut.

I’m glad the Stelara is working for your son’s gut and arthritis. Ideally it’d be nice if I could do just one, but I’m afraid to get off Entyvio since it’s the only thing that has worked long term for my gut. I do like how you said Stelara has a very low infection rate. I wish I knew of people who responded to Entyvio and whose gut didn’t respond to anti-TNF had a good response to Stelara. If Cimzia doesn’t work for my arthritis I’ll probably try Stelara.

Did your son ever try Imuran or Methotrexate for his arthritis, and if so, did he respond? I had a good 3 years on Entyvio and Imuran with only day or two flares of arthritis maybe 2 times a year. I did have iritis a couple times a year too which I thought was pink eye, but they always went away in a few weeks without any other intervention. I do wonder what other people with EIM’s do if on Entyvio.

The only thing with stelara is I think it’s unknown if it works for iritis, at least that’s what my 2nd rheumatologist said. Maybe that’s changed though.
Oh sorry, I was trying to reply to MLP on that one.
 
Stelara is not gut specific at all .
It was designed for psoriasis and psoriatic arthritis (that dose is 45 mg every 12 weeks )
Later was tested for crohns (crohns dose is 90 mg every 4-12 weeks )
Ds takes 90 mg every 4 weeks
It has less than 1 % chance of infection which is very low compared to anti tnf
Per infectious disease doc

Both the rheumatologist and Gi that Ds was seeing for over 9 years told us - due to arthritis and crohns
Entivyio was not an option
Given it can make arthritis worse
And said after you have been on humira abd remicade your body likely won’t respond to another anti tnf since it’s been flooded with it for so long
Also they don’t even use Cimzia at all for jia patients (remicade humira orencia etc...) not Cimzia

Once we raised Ds to 90 mg every 4 weeks his arthritis had been very good
No sign of active arthritis
And fecal cal below 15 so really good as well as normal bloodwork


He was on two biologics (humira plus the other one for a few years ) humira stopped working and then switched to Stelara plus another biologic
No side effects

Things are mostly under control
Crohns /arthritis is under control the auto inflammatory side is tricky ...

So close to 3-4 years on two biologics
I just accidentally replied to Scipio when I was trying to reply to you. My response is below. Sorry about that.
 
While I can't speak specifically to arthritis, in my experience Stelara will work for extra-intestinal manifestations. My GI put me on Stelara when I came down with pericarditis as a Crohn's extra-intestinal manifestation. It's been working pretty well for nearly two years now. No flares of the disease in any location since starting Stelara.
Did you have any other EIM’s with your Crohn’s like iritis or uveitis? Just wondering if Stelara works for those. I’m glad Stelara is working well for you.
 

my little penguin

Moderator
Staff member
Ds was on 6-mp (sister drug to imuran) when he was first dx with crohns - it caused his liver enzymes to elevate - it does nothing for arthritis btw

Methotrexate works for peripheral joints
He has been on that with humira and now with Stelara
He tried it by itself for crohns prior to remicade and it was not enough

Not sure on iritis and Stelara...
 
Stelara entyvio both at q4 dosing multiple loading doses about 8 months stelara 4 entyvio I don’t have any e.i.m so not sure. No side effects. No infections. Also just hit about 13 months of steroids and let’s see 100mg 6mp.
Interesting you’re on Entyvio and Stelara since that was an option I’ve been given and may try if Cimzia doesn’t work. Have you noticed any improve your being in both? I hope upping your 6mp helps. Is your GI concerned at all about your being on two biologics and 6mp? Is that plan to stay on all three?
 
Ds was on 6-mp (sister drug to imuran) when he was first dx with crohns - it caused his liver enzymes to elevate - it does nothing for arthritis btw

Methotrexate works for peripheral joints
He has been on that with humira and now with Stelara
He tried it by itself for crohns prior to remicade and it was not enough

Not sure on iritis and Stelara...
Does your son have peripheral arthritis? And is he on the MTX to help with arthritis, prevent antibodies or just to boost the effectiveness of the biologics?
 

my little penguin

Moderator
Staff member
He has peripheral arthritis
But mtx by itself is not enough (learned that when we had to stop humira )
He has juvenile spondyloarthritis
It does not effect his spine
 
Yes the plan is to stay on both and 6mp and if that doesn’t work then Cimzia + entyvio or stelara we would drop one. I’ve noticed some improvements. I’d say 30%
 
Combining different biologic drugs

The availability of several biologic drugs for the treatment of IBD offers the possibility to combine these agents and simultaneously antagonise different pathways, potentially resulting in an additive or synergistic effects for refractory disease.

Combination treatment with a TNF antagonist and vedolizumab [anti-integrin] is particularly attractive because it includes a rapidly acting systemic agent and a slower acting gut-specific therapy. The first case reports and case series suggest that this combination has an acceptable safety profile and could be particularly useful in patients treated with TNF antagonists who have insufficient intestinal disease control but well-controlled extra-intestinal manifestations.94,95 One ongoing RCT is currently investigating the potential effect of triple therapy with vedolizumab, adalimumab, and oral MTX on endoscopic remission in newly-diagnosed CD patients at high risk for complications [NCT02764762].

We are aware of one small case series on the combination of a TNF antagonist and ustekinumab [three subcutaneous injections: 90 mg, 45 mg, and 45 mg, respectively] for paradoxical psoriasis resistant to topical therapy and MTX in patients with IBD in remission.96 The combination therapy, although not effective on the cutaneous lesions, did not result in short-term AEs and was well tolerated.

 

my little penguin

Moderator
Staff member
ds Was dx with arthritis while on humira for crohns
Rheumo basically said sulfanazine would be useless to add if it was showing while on humira
So they added mtx
His second biologic is not for arthritis or crohns
 
What is the name of the 2nd biologic that is not for arthritis or crohn's?
My son was on sulfasalazine when first dx with arthritis but this was just until he was getting caught up with his vaccinations before starting his remicade treatment. Sulfasalazine didn't do much.
 
Did you have any other EIM’s with your Crohn’s like iritis or uveitis? Just wondering if Stelara works for those. I’m glad Stelara is working well for you.
No, I haven't had any eye problems from the Crohn's, thank goodness. Having a Crohn's related heart problem has been bad enough.
 
I doubt this will get many if any responses since it's uncommon, but does anyone have experience using an additional biologic with Entvyio? I'm on it now and it's kept my gut in check for years but my extra-intestinal symptoms, mainly arthritis and iritis, have been flaring for about a year and half despite, prednisone, imuran, methotrexate and tarcrolimus.

My in-town GI tried to prescribe Humira in addition to Entvyio since I had been on it before and it controlled EM but not gut symptoms, but insurance denied it. I went to another GI at a teaching hospital who suggested Cimzia with Entyvio since it's also a TNF-a blocker but I won't have built up anti-bodies to it, and she somehow got insurance to approve it, so I'll be starting Cimzia shortly.

I'm nervous being on 2 biologics, but at this point, I don't know if anything else will work. Just hoping to find other people that may be in a similar boat so that I don't feel so alone in treatment.

I'm also wondering about Cimzia, but it seems like nobody is on it and the sub-forum hasn't been posted to since 2018.
Yes i was recently on a 6 month trial of Entyvio added to my usual Humira, due to the fact Humira doesn't seem to do much for my Crohn's anymore (if it ever did) but has been helpful for Ankylosing Spondylitis, breathing, and lots of other extra intestinal things for 15 years. I did think I got sicker more easily and severely with common cold type stuff a couple times, and had a bad enough high fever after my first osteoporsis Reclast infusion I was hospitalized. Also i thought i had more brain fog and clumsiness though my GI doc doesn't think it would be caused by Entyvio, and i do have neuro symptoms anyway for many years. My entyvio was discontinued due to lack of clinical response. I'll probably need surgery but if I need the combo again after the disease is reset and Humira is still not working on crohn's, I would be willing to try the combo again. If it helps the big problems it would be worth the risks probably, like with all the drugs.
 
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