Pancreatitis from biologics?

[erinjk]

Hi, all. I'm new here. My daughter, 12, was diagnosed while inpatient 8 weeks ago. First dose of Remicade was inpatient and she did GREAT-- such a quick turnaround that it was amazing. At her next dose, two weeks later, she went downhill quickly and ended up developing pancreatitis. Dr. wanted to try Remicade one more time in case something else had caused it before we took Remicade off the table, so 4 weeks later (last Friday), she had her next dose. She developed pancreatitis again almost instantly.

We're back inpatient now treating the pancreatitis and they are talking about switching to Entyvio in 4-6 weeks and just managing her pain in the meantime while the Remicade leaves her system. I'm terrified that the other biologics will cause pancreatitis again. It's so, so painful for her. But she has moderate to severe indeterminate colitis so the lesser drugs sound like they won't do enough. Has anyone been in a similar boat and can give some advice? Thank you.

 

[my little penguin]

Others have had pancreatitis from other meds here
And one @Nolan11 tagging about similar

tagging @Pilgrim abd @crohnsinct aswell

hopefully the entivyio will do the trick
Just be aware it tajes much longer to be effective than remicade (12 months average fir entyvio ) while remicade is 6 weeks
Average

 

[Lady Organic]

Hi Erinjk and welcome to the forum,
I am sorry about your daughter issues. Generally speaking, Entyvio is known to have a better safety profile than Remicade and Humira. Just looked at the litterature and in 2018 was the first reported case of pancreatitis with Entyvio, so thats seems like a good news and choice for your daughter.
https://pubmed.ncbi.nlm.nih.gov/29305366/Its also true Entyvio can take longer to work, but a positive response could be observed at week 6. At week 16, 50% of patients have a positive response: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7687080/

Has doctor proposed enteral liquid feeds in the meantime to help your daughter? This could help her find some relief in the meantime and may be even reach remission until the Entyvio kicks in.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494406/
You asked a question about Tramadol in another post. I personally never tried it, but my dog just finished a course, for a lombar disc hernia This helped my dog rest and calm down the pain significantly. Being in a relief and positive mind set will help your daughter recover, I would not hesitate to take it.
Hoping she will be better soon

 

[erinjk]

Hi Erinjk and welcome to the forum,
I am sorry about your daughter issues. Generally speaking, Entyvio is known to have a better safety profile than Remicade and Humira. Just looked at the litterature and in 2018 was the first reported case of pancreatitis with Entyvio, so thats seems like a good news and choice for your daughter.
https://pubmed.ncbi.nlm.nih.gov/29305366/Its also true Entyvio can take longer to work, but a positive response could be observed at week 6. At week 16, 50% of patients have a positive response: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7687080/

Has doctor proposed enteral liquid feeds in the meantime to help your daughter? This could help her find some relief in the meantime and may be even reach remission until the Entyvio kicks in.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494406/
You asked a question about Tramadol in another post. I personally never tried it, but my dog just finished a course, for a lombar disc hernia This helped my dog rest and calm down the pain significantly. Being in a relief and positive mind set will help your daughter recover, I would not hesitate to take it.
Hoping she will be better soon

Thank you, Lady Organic. I am actually quite happy to read about your dog responding well as at one point my dog and I were on the same anxiety medications and had equally good responses . I am definitely intrigued by the good responses for Entyvio!

I really, really want to do EEN but I want an NG tube (or an NJ tube, because of pancreatitis). The doctors and hospital are really pushing back on this and refusing until she absolutely needs it.

She is on steroids right now but tapering so we can see if the small healing she's had has been from the Remicade or the steroids.

 

[my little penguin]

Why can’t she drink een orally ?
That is the first trial before a tube
Especially since the formula can be polymeric (whole protein ) such a pediasure -that list kids will easily drink

 

[erinjk]

Why can’t she drink een orally ?
That is the first trial before a tube
Especially since the formula can be polymeric (whole protein ) such a pediasure -that list kids will easily drink

It's just the taste. She couldn't stomach it. We tried Kate Farms, Boost, and Ensure. She was able to make it through a couple bottles a day and couldn't do it after that.

 

[my little penguin]

They should have told you
You give the horrid stuff first (just like baby food )
So you give amino acid based (taste beyond horrible )
Then semi elemental
Then polymeric
By that point it’s like ice cream to them
Second just like seat belts medicine etc are not negotiable
Neither is drinking the shakes
It’s not a food choice
It’s medicine -required so treat it as such
The pre teen years are tough for chronic illness
Teenage years are worse
Rewards for each day
Then each week
No other food allowed
My kiddo drank peptamen jr (much worse than boost or ensure ) for 3-4 years
Then neocate jr (elemental formula had him in tears daily for two weeks ) then his taste buds adjusted and he was ok -could drink it in a few minutes multiple times a day
Sorry to be tough but crohns /ibd is tougb
Een is what is needed
Not wanting to drink it because they don’t like the taste is not an option
Not being able to drink it due to vomiting is a different story
Make the drink cold
Tons of crushed ice
Put a lid on it (disposable coffee cups )
Put a straw in to by pass taste buds
Add Hershey choc syrup
And have her plug her nose
It can be done

just not if it’s treated like a meal or food

 

[my little penguin]

Docs won’t put in a tube simply because she doesn’t like the taste
Been there done that got the t shirt for elemental formula abd semi elemental formula
Ds hate despised both
But he did it

Ds was only 7 at dx and now 17
So 10 fun years of crazy
It’s hard watching your kid in pain easier to say they don’t have to ... fill in the blank

 

[Maya142]

My daughter had pancreatitis last summer. It truly causes horrible pain. She was in the hospital for 12 days (though she had other stuff going on - she had severe motility issues - ileus - which actually caused the pancreatitis). She was in a LOT of pain and still maintains that that hospitalization was the most painful and more difficult to get through - and she has had 10 surgeries, including having 2 total joint replacements (at the same time) due to her severe Ankylosing Spondylitis (it was an 8 hour surgery, where she spent 2 days in the ICU and 9 days on a regular floor).

We were told the treatment for pancreatitis is gut rest and pain relief. She was actually NPO for 5-6 days, then on TPN for 5-6 days and then transitioned to tube feeds. My daughter had a feeding tube prior to the pancreatitis - she has had one for years due to being severely underweight due to Crohn's.

When my daughter was diagnosed with Crohn's and for about a year after dx, she was quite underweight - she lost 15 lbs during that period and was very thin to begin with. Initially we saw a dietician and tried to increase calories with more food. That failed. Then she was told to start drinking semi-elemental shakes (polymeric shakes like Boost and Ensure, which taste like dessert compared to semi-elemental or elemental shakes, caused diarrhea for her) which taste pretty awful. She managed to get somewhat used to the taste, but just couldn't drink enough to stop losing weight, much less gain weight. So then we were sent back to the dietician and then saw her GI who essentially said she needed the formula and she could either use an NG tube or drink.

Her GI pushed the formula - NOT the method of intake - drinking vs. tube. So she learned to place the NG tube when she was 16 or so - inserted it at night and removed it in the morning, so no one at school would have to know.

Later on, she developed motility issues and was throwing up NG tube feeds. Again, her GI pushed formula - she could either drink it OR use an NJ tube. She tried drinking it and lost more and more weight until she finally agreed to the tube (she was 18 then, so it had to be her choice)

I do agree that formula should be treated like medication, but honestly, pancreatitis is SO painful that I would not force my daughter to drink formula if she could not. If she wasn't in horrific pain, I would push drinking, but knowing how much pancreatitis hurts, I would not force her to drink, if it were my child. Not if she was willing to use a tube.

That said, our hospital was very pro tube and I know all doctors are different. But my daughter (who is now in her 20s) says in that kind of pain, all her energy was focused on dealing it and she cannot imagine forcing herself to drink while dealing with that pain.

Can I ask - since she is inpatient, couldn't they do TPN? That is usually what is required first - complete gut rest (at least, that's what we were told) and then you work your way up to tube feeds or drinking the formula.

 

[Maya142]

In terms of pain, Tramadol is a weak opioid. It won't help as much as IV Morphine or even oral Morphine, but it should definitely help some. My daughter was on it for several years because of her arthritis (she has very severe arthritis). She never took it for her IBD pain (she generally used heat for that) but she did notice that it helped her belly pain too, though she was taking it for her arthritis. It should definitely help with some of the pancreatitis pain. Side effects can be nausea and constipation - she used Miralax or Milk of Magnesia.

From your other thread, Toradol is IV and can only be used for a few days, so you could ask her GI if a different NSAID like Celebrex (which is the one that is easiest on the gut) is allowed. It may not be due to her IBD flare, but considering they were giving her Toradol, which is a much strong NSAID, it might be.