Entyvio vs Stelara - looking for advice

[Lajn]

Hi there,
My son will be 17 next month, and was diagnosed with Crohn’s this summer. The inflammation is mostly in the descending colon. His only symptoms were blood in his stool, which cleared up with an 8 wk course of prednisone (finished a week ago).

We met with the paediatric GI and NP at the children's hospital last week and were given a list of options for treatment. We have narrowed it down to Stelara or Entyvio to avoid on-going infusions. My son has a needle phobia, so he would prefer to use a pen, which I understand is available with Entyvio, but not with Stelara. If it weren’t for that, I lean towards Stelara because the frequency would be every 8 weeks vs every 2 weeks.

Any advice for us? Is the pen less painful than the pre-filled syringe? Or just easier? Anything else to consider?

Thank you in advance for any wisdom you have to share!

 

[pdx]

My daughter also hates injections, and has pretty severe sensory issues, but she has dealt with shots and infusions 9 years now, and we've gotten through them without too much drama. We've never tried pens, but my sense is that they aren't less painful, and can even be more painful. They can be easier and quicker to self-administer, but my daughter isn't even close to being able to do that--my husband and I always give her her shots. (She's in college now and we still drive the 90 minutes to her school to do the injections, or she comes up for a visit that weekend.)

She's currently on Stelara, every 8 weeks, and here's our current routine: About a week before the shot, I remind her that it's coming up next Saturday, so that it won't take her completely by surprise. On the day of the shot, we are very matter of fact about it, and just get it over with quickly, despite any protests. We use the Buzzy (https://paincarelabs.com/buzzy), she eats some kind of sour candy while we're doing the shot, and then she'll sometimes put some ice on the injection site afterwards. She often protests as we're doing it, but it's over in minutes and she's completely over it a few minutes after that.

For me, shots are so much easier than infusions. And doing shots every 2 weeks would also be difficult unless my daughter could do them herself.

I don't know how you feel about giving shots, but just so you know, my own queasiness about giving shots is long gone; I'm really used to it now.

 

[Scipio]

Where are you located? If you are in the US, Entyvio is FDA approved for infusion only. They are considering approving the injection formulation but it is not yet through the agency. Stelara is FDA approved for injection.

 

[Pangolin]

An injection every 2 weeks would be Humira, not Entyvio or Stelara. (but see edit below)

Standard dosing:
Humira: injection every 2 weeks
Entyvio: IV infusion every 8 weeks
Stelara: 1 IV infusion then injections every 8 weeks

Needle phobia can be reduced with numbing cream and maybe some other steps like hiding the area from sight and going through some exercises like counting and breathing.

But really the most important things are safety and efficacy.

From what I've observed personally and on the forums, Stelara has the best efficacy of the three.

Stelara also tends to have a low side effect profile.

Humira doesn't seem to be as effective and definitely has more side effects.

Entyvio is probably not as effective as Stelara usually, but it is said to be gut-specific and therefore have very low side effects.

Edit: Sorry, I guess outside the US the entyvio dosing may be different, and it may be more frequent injections instead of infusions.

 

[my little penguin]

So my two cents
Stelara works better on the small intestine
Entyvio better on the large intestine
Is what we have been told
Infusions are time consuming for college students
Stelara has a spring/plastic that covers the needle as soon as shot is given so you don’t see the needle coming out
Medical Psychologist may be able to help
My “child “ is 19 and has been on Stelara for 6 years no issues .
We also give him his shots since his docs do not recommend that he keep the meds in his dorm or at student health

in the US you can get infusions done in your dorm room or home .

 

[Lajn]

I'm in Canada, and both Stelara and Entyvio are available SC after an initial infusion. Entyvio has a pen; Stelara a pre-filled syringe. Entyvio is every 2 weeks, vs Stelara every 4-8 weeks. We've ruled out the other options, and are trying to decide between these two. I would prefer to go with Stelara because of its efficacy and it is less frequent, but my son is very anxious about eventually having to give himself a needle. He wants to go with Entyvio because he feels a pen would be a lot easier for him to use once he has to do it on his own. I'm happy to learn how to do it for him as long as he needs me, and his older sister is a nurse, so she can also do it for him. The clinic has also said he can continue to come in for his injection (of course, this will change once he turns 18)

Thank you for the replies. This is all very overwhelming, and all of your advice is so appreciated.

 

[Lajn]

in the US you can get infusions done in your dorm room or home .

Wow, that's service!

 

[my little penguin]

If he has seen an epi pen this is same loud “click “
So as long as he can handle the loud click

the Stelara syringe is weird
It’s thick plastic with the vial inside
Think of kids toys with the very hard plastic that breaks off easily-same type of plastic for the syringe with “wings “

 

[Pangolin]

Regarding syringe vs pen:

The Stelara injection is a fairly large volume, and we've found that it's best to push it in somewhat slowly. A pen injector has a fast speed and doesn't allow that kind of custom speed. However, a pen may be preferable for a low volume injection where fast or slow doesn't matter.

 

[Lajn]

Thank you both. This is the kind of information that is hard to get elsewhere.

 

[Scipio]

I'm personally taking Stelara and am pleased with it (except for the horrendously high cost in Medicare), but one thing in favor of Entyvio in your son's case is the location of his disease - primarily in the large bowel. Entyvio is specific for a protein that is found primarily in the large bowel, so it's targeted in the right area for your son.

Both drugs are approved for Crohn's regardless of location, but "word on the street" is that Stelara works better for small bowel Crohn's (like mine), and Entyvio works better for large bowel Crohn's. Of course, as with all things Crohn's, your mileage may vary.

 

[momsa]

Your son sounds a lot like my sons, with needle phobias and disease focused on the descending colon. One of mine is now considered in endoscopic remission on the Stelara. Stelara was three infusions and then the rest have been injections. We've found that either his college health services nurse can give him the shot or when we order it from Option Care and use our medical insurance, an Option Care nurse can give the shot. He was at every 8 weeks and then went to 4.
I know the word on the street seems to be that Entyvio works better for large bowel Crohn's, but that wasn't the opinion of our doc, nor was it our experience. Sorry to muddy your waters here - I certainly know how frustrating it is to try to figure out which med is going to work.
My other son was on Stelara and found it helped, but not enough. He then switched to Entyvio, which was all infusions. Infusions was the only choice here in the US for Entyvio. I don't think the Entyvio did much for him, but everyone is different, so that doesn't mean it wouldn't work for your kid. Anyway, FYI, that son is now on Skyrizi, and while he hasn't been scoped yet, his labs are literally normal for the first time.

 

[Maya142]

I'm going to muddy the waters even further . We have been told that Entyvio works better for the large bowel and Stelara for the small bowel. My younger daughter has been on Entyvio infusions, but the pen is not available in the US. She has not been on Stelara but because she has both severe autoimmune arthritis and Crohn's, she's been on 11 biologics (she is currently on 2 biologics - one for her Crohn's and one for her arthritis - since her arthritis has been very, very difficult to treat and unfortunately doesn't respond to the same meds her Crohn's does).

On the forum, I have heard many parents say their kids prefer syringes because they can control the speed of the injection. My daughter (actually both my daughters - the older one only has arthritis, no Crohn's) prefer pens. They say that the injection is over much faster, they don't have to worry about making sure they're injecting at a particular angle, they don't have to see the needle and honestly that with the pens, they're so easy to use that a monkey could do it! (You literally just have to press a button).

I will say that their doctors encouraged them to start doing their own injections early - to give them a sense of control. My older daughter started at 15 and my younger one at 13. They have both used prefilled syringes, regular syringes that you have to fill yourself and pens at various times. They find pens just much more convenient. We always made it a routine - they chose the injection site, iced before the shot, did the injection while watching TV so they were distracted and if necessary iced after the shot. Dessert after the shot helped when they were younger. The click the pen made never bothered them and they've used MANY different pens between them - Humira, Simponi, Enbrel, Cosentyx, Taltz, Tremfya etc.

They have both also tried Buzzy and my younger daughter occasionally uses it for a biologic she is on for her arthritis. She thinks it helps somewhat. My husband has the same type of autoimmune arthritis that my girls have and he HAS to use Buzzy and will absolutely not give himself his injections (my daughters think this is absolutely hilarious) - I have to do them for him. He also ices for a good 15 minutes before the shot. My husband has been on several different biologics and absolutely refuses to use a pre-filled syringe - he does NOT want to see the needle.

I would say that if your son is scared and is leaning towards the pen, then that's what I'd choose.

I don't know if infusions are an option, but a LOT of kids/teens/adults with needle phobias prefer them because then someone else is in charge of the needle. My daughters didn't mind them, but found them inconvenient as they got older - our insurance generally did not approve home infusions for biologics (but it would for Solumedrol for example). I don't know if that's an option for you, but I would say don't rule it out since it sounds scary. Entyvio is a 30 minute infusion usually every 8 weeks, so it's not too bad.

But going back to injections, I do think it really helped my daughters to do their own shots - of course they were very nervous when they started with pens and then again very nervous when they had to use syringes for Methotrexate (which are not pre-filled). But now it is so normal and routine that "shot day" is not something they dread or even complain about. In fact, most of the time they look forward to shot day because it's an excuse to watch TV and eat dessert and they know they'll feel better after it.

I will also say that my girls were able to store their injections at their colleges. When they lived in dorms, we got them mini-fridges with locks but to be honest, since they usually lived in suites and apartments, they used the communal fridge. Never had an issue. We did investigate having the college health center nurses give injections, but my daughters both decided that it was easier to do it themselves.

In terms of pre-filled syringes, my younger daughter has used Cimzia which comes in a syringe similar to Stelara. It's thick, so she would inject it slowly. But she really did much prefer pens when they were available.

My daughter Crohn's has honestly done best on anti-TNFs like Humira and Remicade, so I can't really say whether Stelara or Entyvio would work better for your son - only that we have been told Entyvio tends to work better for inflammation in the colon.

 

[Maya142]

I also wanted to add - my daughter has found shots that are pre-filled syringes and have preservatives that burn actually MORE painful than the pen version, because they are slower and prolong the burning.

Honestly, every kid is different and unfortunately, it's trial and error to figure out what works.

I do think seeing a psychologist can REALLY help kids/teens/young adults cope with the challenges of having a chronic illness. For my younger daughter, who has had many surgeries and many hospitalizations, seeing a psychologist made a world of difference.