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Anybody on 2 biologics

Poor Lucy has been really unwell and we are in hospital for the last week. Her crohns is now active pretty much everywhere, her bum, large bowel and small bowel. She's had mre and upper and lower scopes in the last few days. She is currently on TPN moving to 8 weeks een after that. Also on iv antibiotics as she had significant abscess. Absolute nightmare and shock as her symptoms had improved significantly on stelara. So the long term plan is to move to two biologics , humira and entyvio. Surgery not an option for now. Anybody else in this situation. Thanks Polly
 
Oh man Polly! We are to! No abscesses though. O has been in the hospital 4 times since May 12th and going on 26 days inpatient.

We are still waiting for Entyvio to kick in. Met with surgeon about colectomy last time but decided we weren't there yet. Now it looks like small bowel may be also inflamed so even that is off the table for now. She is also on TPN and going home on it.

Stelara is very slow to work. How long has it been? I have heard though that it is better for the small bowel than large so that still probably wouldn't fix all her problems.

Has she been on humira before? It has one if the best success rates.

Entyvio is supposed to be good for the colon but takes 12-24 weeks to work. The EEN should help bridge you to that point.

As for two biologics the team here hasn't suggested it yet for O. However, from what I have read Entyvio is the best drug to combine with in terms of risks as it is very gut specific.

Maya142 and MLP both have kids on two biologics. I think prescribed by two different specialists. Not sure how your health care works but in the u.s. It seems easier (not easy) to get two biologics approved if they come from two different specialties.

Wish I had more to offer than company in misery and hugs.

Oh wait! There was one thing we tried. More effective for colonic disease but I will throw it out there in case you or docs want to try it. We did antibiotic treatment. First vancomycin. That didn't work so then we tried triple antibiotic therapy. Amoxicillin, doxycycline and metronidazole. It is more successful in UC but there are promising stats in colonic crohns also. It didn't work for O but I am glad we tried it.

As things are suggested here I will share with you.
 
So sorry to hear this. I really hope that the TPN and EEN give her some relief, and that her doctors figure out a good long term option for her.
 

my little penguin

Moderator
Staff member
What dose of Stelara is she on and frequency ?
Ds who has mild crohns
Took 90 mg every 4 weeks to calm inflammation
Every 8 weeks didn’t cut it
Sorry she is doing poorly
We were told he would get worse prior to better since Stelara like Entyvio is a different pathway and takes 6-8 months to be effective for both
Ds needed steroids until the 6 month mark

He currently is on two biologics
One is for crohns -Stelara
Other is for auto inflammatory (Sweets syndrome ) -ilaris
So different pathways for different diseases
Ilaris and it’s sister drug kineret are given to patients with sepsis so it reduces infection

Big hugs 🤗
 

Maya142

Moderator
Staff member
My kiddo is also on two biologics. She is on an anti-TNF for her Crohn's and a different biologic for her arthritis. She actually did first try Entyvio with the arthritis biologic, and unfortunately it caused drug induced Lupus. Which is apparently unheard of in Entyvio, but she got better after we discontinued it.
After that we tried Cimzia with the arthritis biologic and that combo has worked well for her. In our case, the rheumatologist prescribes one biologic and her GI the other. It was a nightmare getting it through insurance. I'm not sure how it works in Ireland or the UK.

We have had no major issues with 2 biologics - no increase in infections thankfully.

I'm really sorry to hear how sick Lucy is. I'm so sad that she has to go through all of this. Poor, poor kiddo. Has the TPN or have the antibiotics helped at all? Have they tried a higher dose of Stelara prior to switching to Entyvio?

We will keep your girl in our thoughts!
 
Thanks everybody for the well wishes - so after 10 days she go home - had first loading dose of humira before we left hospital - second due again this week and stelara also this week and also on EEN. Because stelara can take up to 20 weeks they have decided to stick with it for now and will review again in a few weeks. She had first infusion on 1st March and then sub cut 4 weeks later and reinfused 4 weeks, sub cut 4 weeks and due sub cut again this week.
The Humira is for the peri-anal disease and while Im not overly comfortable with two biologics I think this may work as it was the humira that sorted the her initial peri-anal disease but then when she started to have bowel symtoms felt it wasn't working, however the feeling now is that it held the peri anal disease so worth a try again. She was on IV cipro and metronidazole and switched to oral going home - finished them now. Crohnsinct are you still in hospital with your dd?
No issues insurance wise for 2 biologics this side of the atlantic.

Polly
 
Well hurray for no insurance issues! How is she feeling? Are the symptoms decreasing?

We are still in the hospital...I am going to start picking out carpet and drapes soon.
 

Maya142

Moderator
Staff member
The Humira is for the peri-anal disease and while Im not overly comfortable with two biologics I think this may work as it was the humira that sorted the her initial peri-anal disease but then when she started to have bowel symptoms felt it wasn't working, however the feeling now is that it held the peri anal disease so worth a try again.
Polly13, I was absolutely terrified when our doctors started talking about 2 biologics. It isn't done often - my daughter's GI said M was her first patient on 2 biologics. Her rheumatologist told us the same. Same when we went to the adult GI - she was a bit shocked but after reading her records, she changed her mind.

She has been on 2 biologics for 2 years now and now it has become normal and just part of our routine, and we never really think about it (well, except when we're worrying about insurance).

Our plan was also to go back to Humira for her IBD but insurance would not approve it, so she ended up on Cimzia. She has done well on this combination and no increase in infections or anything like that. Hope Lucy will also benefit from the combination and will begin to feel better soon!!
 
Just want to update everybody - Lucy is doing much better, her bloodwork his better, her energy levels are better, down to 3-4 bathroom visits a day, no blood in stools and no diarrhea in about two week. She's almost 4 weeks into the EEN and is managing quite well. The peri - anal disease is still quite active but I know thats slow to heal. We are back with GI on Tuesday for review so I will keep you posted. Thanks for all the support.
Polly
 
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.

 
Just another update - Lucy still doing well, her perianal fissure is still open but is healing - it is slow but I know from last time it was open that it took a long time to heal. Had our GI visit 2 weeks ago, her blood work is good with regards to inflamation but her liver function tests were a little off, so we repeat these tomorrow ...... I am slightly worried as she is on a lot of medication and it is a possibility that it causing this. She is on Humira every two weeks (80) and stelara every 4 weeks
 

my little penguin

Moderator
Staff member
Glad she is improving
It’s hard when they need a lot of meds
Ds is on Stelara every 4 weeks plus another biologic (different condition) every 2 weeks
Fingers crossed the liver calms down
 
Liver numbers can bounce in and out of normal range with non explanation why. Was it all liver values or just one? I wouldn't worry until the docs tell you there is something to worry about. Glad they are being diligent and rechecking.
 

Maya142

Moderator
Staff member
I'm glad she is improving slowly, though I know how hard it is to be patient!! I agree with crohnsinct - if they're a little off, I wouldn't be too worried. My kiddo is on 18 medications and I used to worry about it all the time. Well, to some degree I do still worry, but for the most part, I figure the doctors will tell us if something is very concerning. We've never had docs concerned about slight abnormalities, only big abnormalities. I usually just watch the trend and bring it
My daughter is on 2 biologics, Methotrexate and another immunomodulator used for arthritis- so far so good 😬!!
 
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