Little Pilgrim moves to 3rd Biologic

[Pilgrim]

Hello my friends! This week H moved to her 3rd biologic. Humira age 4-10, Stelara ages 10-13, and this week she started Entyvio. Stelara was at 90mg/4weeks with a reloading infusion dose not too many months ago. Her fcal rose and stayed around 1500 before and after the reloading infusion so it seemed clear that she lost response. As I understand from her last scope, Spring 2024, her inflammation is active in the right side around the hepatic flexure. The TI was perfect. It's not her usual area of inflammation. So, I think Stelara did a great job in her small intestine and TI.

When she was little, she had a lot of inflammation at the top of her colon. While on Humira it shifted into her duodenum, stomach, and she had some deficiencies which related to active small intestine disease. The TI was usually affected.

She had her first Entyvio infusion this week. She is just finishing a bridge of Entocort (budesonide) which didn't do anything for her gut - but she said her joints feel better.

She's hoping the Entyvio helps soon. How did Entyvio go for your children? She isn't little anymore - 13 and towers over me! Adult experiences are also relevant.

Thanks!

 

[my little penguin]

Glad she is moving on
Really hope it helps her.
Thing to watch for entyvio is gut specific
Stelara and humira were not
So if she has juvenile arthritis that is independent of gut flares odds are her arthritis will get worse
If her arthritis is only active when her gut is inflamed you should be ok
Puberty and autoimmune is evil
My kiddo made to the other side but lots of flares until all the chemistry inside settles down .
We were told entyvio was not an option since his arthritis is worse than his crohns and flares regardless of his gut .

fingers crosssed it works for her
Still sitting on Stelara/methotrexate here and he will be 21 soon (yikes )

 

[Pilgrim]

@myhowmany years taking Stelara? I really loved Stelara...will miss it for H.

 

[my little penguin]

I want to say almost 7 years since he started it at 14 (I think )
It was his third biologic
Remicade age 8-9
Humira 9-14
Stelara 14 -….(almost 21)

 

[Crohn2357]

I wish it was possible to combine Humira and Stelara for the treatment of CD.

If your daughter hasn’t been using an immunosuppressant with the biologic, that would be worth considering.

Adult experiences are also relevant.

My crohn’s is mostly in my colon. Entyvio didn’t help me, but I have read that it can take a long time to work, if it’s going to work at all.

 

[Pilgrim]

I wish it was possible to combine Humira and Stelara for the treatment of CD.

If your daughter hasn’t been using an immunosuppressant with the biologic, that would be worth considering.




My crohn’s is mostly in my colon. Entyvio didn’t help me, but I have read that it can take a long time to work, if it’s going to work at all.

We'll be patient if she isn't struggling too much. What ended up helping you? Or are you still looking for the right med?

 

[Crohn2357]

What ended up helping you? Or are you still looking for the right med?

The latter, my rectum is in bad shape; but I haven’t lost heart. Aside from other meds for CD, we doubled Stelara dose to every four weeks about two months ago.

We'll be patient if she isn't struggling too much.

I think that’s very understandable, but living with CD has taught me the importance of being aggressive with the treatment, as uncontrolled CD can be extremely damaging and progressive; compared to the mostly statistical harms inflicted by the meds. This would especially be the case for a 13 years old girl, who needs a high level of nourishment and health (i.e. being free from inflammation). If you feel she isn’t getting enough calories and micronutrients necessary for her health, I think it could be a good idea to use EEN. That could also help with her CD.

I hope she responds quickly to entyvio and becomes healthy, for the rest of her life. It’s tough to deal with this disease, both for the patient and for the caregivers. You have my sympathies.

 

[Pilgrim]

H has done several 6 week EEN runs over the years and this time she told me she just couldn't do it. Her growth is on track, but we are waiting for her large panel of labs to address any deficiencies. Results should be in next week.

 

[my little penguin]

@Pilgrim
Completely understand
Ds did his last round of een at 12 or 13
Even then he only made it 2 weeks full een
We agreed to keep supplemental en on board
Which he did and still does
Drinks 2 shakes most day (in college so he forgets )
But at almost 6 ft and a guy he needs a ton of calories to maintain weight even on good meds .
So maybe 1-2 a day just as a cushion
Teens are tough
Twenty something isn’t much better though
Hugs

 

[pdx]

Hard to believe that H is 13, and it's great to hear that she is towering over you! Entyvio did not work for E, but her inflammation was all in her TI and the small intestine nearby. Is Remicade an option for H if Entyvio doesn't work?

 

[Maya142]

So I’m confused - her inflammation is now in her colon? And there’s none in her TI? Have you stopped Stelara or is she going to be on both Stelara and Entyvio?

My daughter has been on Entyvio (but years ago). She took with it with another biologic though, so her experience was not typical. She just had two or three infusions and she got this butterfly rash on her face, had terrible joint pain and experienced a whole different kind of fatigue. It was absolutely awful. Her GI checked her anti-histone antibodies and ANA and both were high and she was diagnosed with drug induced lupus, confirmed by her rheumatologist. I think it's very rare (her GI had never heard of a case with Entyvio) and it's possible the combination of the two biologics did it, but she had been on Cosentyx for her arthritis for a year, so I'm inclined to think it was Entyvio. It took her months to recover.

There are also studies that show Entyvio can worsen arthritis or even cause new onset spondyloarthritis. I know H has had arthritis symptoms before but I don't remember how bad they are or if she sees a rheumatologist? I'd just watch carefully. If Entocort helped her joints and it's a largely gut specific steroid, then hopefully her arthritis will become controlled as soon as you control the rest of her IBD (let me put it this way - Entocort has NEVER touched my daughter's arthritis though it has helped her IBD).

The infusions were actually easy and short. No issues with them as far as I remember.

I also can't believe little H is now 13!!
.

 

[my little penguin]

@Pilgrim
How is she doing with the new med ?
How is her arthritis?

 

[ross76]

It's crucial to monitor symptoms and communicate with the doctor. Additionally, it might be helpful to consider dietary support. Sometimes, the right diet can help manage symptoms. I hope she feels better soon and that you see positive changes quickly!

 

[Pilgrim]

@Pilgrim
How is she doing with the new med ?
How is her arthritis?

Seeing some improvement. 3rd loading dose coming up in about a week. The infusion can be done at our local hospital which is great and the infusion is about 30 minutes.

She is also seeing joint pain reduced - her joint pain is tied to her Crohn's as far as we know.

She is rocking high school in that over achiever kind of way. So far so good!

 

[Pilgrim]

It's crucial to monitor symptoms and communicate with the doctor. Additionally, it might be helpful to consider dietary support. Sometimes, the right diet can help manage symptoms. I hope she feels better soon and that you see positive changes quickly!

Thanks! We have done SCD in the past (didn't help her) and CDED (helped my other child with Crohn's immensely). She responds to six week courses of EEN very positively but she just can't do another round at this time psychologically. Fortunately we are starting to see improvement with Entyvio. It is her 3rd biologic. She has been working with various drug/diet options for 10 years now.Wow!

 

[Pilgrim]

So I’m confused - her inflammation is now in her colon? And there’s none in her TI? Have you stopped Stelara or is she going to be on both Stelara and Entyvio?

.

Yes! Last scope showed her inflammation in her colon. It has been in so many different locations over the past 10 years of scopes!
None in her TI last scope.
She has stopped Stelara so the question is...is this whack-a-mole? Will Entyvio help in her colon and then Crohn's reemerges in her TI or northwards?
Time will tell. But - she is starting to feel better - so we'll roll with the drug change.

 

[Pilgrim]

Hard to believe that H is 13, and it's great to hear that she is towering over you! Entyvio did not work for E, but her inflammation was all in her TI and the small intestine nearby. Is Remicade an option for H if Entyvio doesn't work?

We'll cross that bridge when the time comes! I've read studies that show returning to an anti-tnf can be effective- so possibly!

 

[Maya142]

Thanks! We have done SCD in the past (didn't help her) and CDED (helped my other child with Crohn's immensely). She responds to six week courses of EEN very positively but she just can't do another round at this time psychologically. Fortunately we are starting to see improvement with Entyvio. It is her 3rd biologic. She has been working with various drug/diet options for 10 years now.Wow!

EEN and diets are so hard when they're teenagers. Glad she seems to be doing better!!! Really glad her arthritis is related to her Crohn's and doesn't flare independently. And way to go for doing so well in high school - my daughters were major overachievers too, despite all they went through!

 

[Older Crohner]

Hello my friends! This week H moved to her 3rd biologic. Humira age 4-10, Stelara ages 10-13, and this week she started Entyvio. Stelara was at 90mg/4weeks with a reloading infusion dose not too many months ago. Her fcal rose and stayed around 1500 before and after the reloading infusion so it seemed clear that she lost response. As I understand from her last scope, Spring 2024, her inflammation is active in the right side around the hepatic flexure. The TI was perfect. It's not her usual area of inflammation. So, I think Stelara did a great job in her small intestine and TI.

When she was little, she had a lot of inflammation at the top of her colon. While on Humira it shifted into her duodenum, stomach, and she had some deficiencies which related to active small intestine disease. The TI was usually affected.

She had her first Entyvio infusion this week. She is just finishing a bridge of Entocort (budesonide) which didn't do anything for her gut - but she said her joints feel better.

She's hoping the Entyvio helps soon. How did Entyvio go for your children? She isn't little anymore - 13 and towers over me! Adult experiences are also relevant.

Thanks!

Hello Pilgrim...This is Mary. I am 71 now and was diagnosed with UC at age 16, changed to Crohns Colitis at age 50. Of these 55 years of disease, I have only had 15 years of remission (after pregnancy). My med course was sulfasalzine and prednisone before biologics and DMARDs became available. Up until this past year my disease has always been moderate to severe by endoscopy with fcal always quite high. Remicade worked for me until it did not (it took more and more to be effective). I then changed to Humira, with methotrexate and entocort. When they say you may have neurological problems with this drug, ask what do you mean specifically. I had neck pain, thinking it was stenosis, and it was a lesion on my spinal cord caused by humira (this is what Multiple Sclerosis is). I have a few spots on my brain but truly no other symptoms, Thank You God! So..I then transitioned to Entyvio, again with methotrexate and entocort. Off methotrexate due to Covid risk. Entyvio did not work well for me. Then I started Stelara in 2021 and that so far has been successful. I am off methotrexate and entocort. Scopes show mild to moderate disease. I still remember as a teenage thinking I was invincible and did not communicate symptoms with my parents because it was embarassing. I hope your daughter is a better communicator...she surely needs you. The one thing I would suggest, that I feel has truly helped me, is with diet. I make my own bread, sometime Einkorn flour, sometimes not.....obviously no preservatives. Make bone broth, loaded with collagen (I use my crockpot overnight). Also I felt much better after I started taking collagen (Hydrolized) powder in my morning coffee or tea. The collagen helps to rebuild the gut lining and can also help with joint pain. Probiotic (florastor), anti inflammatories (tumeric, vitamin d, krill oil), B12, Vit K2. It's a long road and acceptance is important. Good luck!

 

[Vishakh C M]

Please try homeopathy . Good positive results even permanent cure is happening