Skyrizi? Rinvoq?

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momsa

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For someone with colonic Crohn's who has failed Stelara, Entyvio, what thoughts do people have about the safety and efficacy of Skyrizi or Rinvoq? Thanks.
 
My daughter has Crohn's in her terminal ileum and colon and she has been on Rinvoq. She was on it for psoriatic arthritis/Ankylosing Spondylitis and Crohn's. Unfortunately, it did not work well enough for her arthritis (which is severe) but it did work for her Crohn's (which is in the mild to moderate range). She was on 30 mg (I think in Crohn's trials, they started with 45 mg for induction and then 30 mg for maintenance) and saw an improvement within a few weeks.
She has not been on Skyrizi but she has been on another IL-23 inhibitor (guselkumab) in addition to Remicade and the combination did not work for her. But she was only on guselkumab for 6 weeks and her rheumatologist said IL-23 inhibitors generally take 6 months to work.

In your son's case, I would go with Rinvoq since he's already failed Stelara which is an IL-12 and IL-23 inhibitor. Skyrizi just blocks IL-23, but it is similar. Rinvoq is a completely new mechanism. But JAK inhibitors like Rinvoq come with MORE risks than anti-TNFs. Actually, they even just changed the labeling on Rinvoq to say that you MUST have tried and failed one TNF inhibitor before trying Rinvoq - due to increased malignancy risk, increased risk of blood clots and heart disease with Rinvoq. We were also told it is more immunosuppressive than anti-TNFs and my daughter (who almost never gets sick, even when she's been on two biologics + MTX) got infections a lot more than normal. It can also cause elevations in creatinine kinase and triglycerides.

I would honestly choose Remicade or Humira in this case, to be honest. They work for colonic disease and they have a completely different mechanism than the meds you've tried and they're safer than Rinvoq definitely.
 
Rinvoq is not FDA approved for treatment of Crohn's disease. JAK inhibitors haven proven to work pretty well for UC but less so for Crohn's. Consequently, no JAK inhibitors have yet achieved approval in the US for Croihn's.
 
You could certainly try it. With any drug, it's going to be trial and error. I just think you have two VERY good options left that work relatively quickly and have LOTS of data behind them - Humira and Remicade. Skyrizi is very new and while it does look promising, it's just hard to know if it works in the long-term for patients who have failed Stelara and whether it works equally well for colonic disease and small bowel disease. I know with Stelara we were told that it really works better for small bowel disease. Humira and Remicade, on the other hand, work for both small bowel and colonic disease.

I am going to tag @crohnsinct since her daughter has been through almost every medication option. She has severe Crohn's in her colon and she was told not to bother with Stelara. Skyrizi had not been approved at the time. However, she is on Rinvoq currently.

How is your son doing now? He's on Entyvio currently, right? What are his symptoms and what did his last scope show?
 
Thank you for your message. I have identical twins. One seems to be doing very well on Stelara. The other one has tried Stelara and then Entyvio. We're not quite sure how much the stelara did for this twin because the first doc to scope him diagnosed him with the Crohn's without looking around very much. That was before we shifted to an IBD center. We know we should probably just try an anti TNF. I don't need anyone to tell me how safe they are - I've read many of the studies. I also know of course that we want to avoid colon cancer. The problem is that a young, very close family member died of lymphoma right before my kids were diagnosed. So to see the lymphoma warning on a medication and to think about giving it to my sons is very difficult. I am trying my best to be rational about it. I also know that if we don't exhaust our other options before going to the anti TNF, it's going to be hard for us to sleep at night. Happily, we have very understanding docs now. The son who is not doing so well was scoped yesterday. He has a couple of spots in his sigmoid colon that are just beginning to narrow - the doc was not in any way alarmed, but we need to switch off Entyvio. For both sons, the inflammation as basically been confined to the sigmoid colon the whole time. The son on Stelara has no symptoms at all and great labs (though hasn't been scoped in a while), the other one has longer sessions in the bathroom than most people (no diarrhea, just gas) but is otherwise feeling very good. Thank you for your interest.
 
So something to look into
Back in the beginning they would not just give remicade /humira without a patient trying and failing 6-mp/imuran
Additionally a lot of Gi’s during that period also gave 6-mp/imuran with remicade to reduce the risk of antibodies
It wasn’t until later that the studies came out that folks who only took 6-mp /imuran were at higher risk of lymphoma from just those drugs alone .

which from a science experiment/trial perspective means there is no way to untangle the true risk of lymphoma from native biologic anti tnf users from the early trials that side effects were based on which folks had combo meds
 
The other thing I'd worry about is time wasted on trying a treatment that may or may not work for colonic disease. My daughters have a friend with small bowel Crohn's who was initially put on Stelara. She had very minor narrowing in her small bowel at the time, at the terminal ileum. For a while, Stelara worked, but she was never in remission on it - there was always some inflammation in multiple parts of her small bowel. So her GI increased her Stelara frequency to every 4 weeks. But despite that, in the last 7 months that minor narrowing became two strictures - one involving her terminal ileum and one in her jejunum (which is actually worse than the TI stricture). Her most recent MRE showed that there was significant scar tissue in addition to both acute and chronic inflammation. She will be switching to Remicade ASAP and is hoping she can avoid surgery, but it seems unlikely.

So my worry would be that there is less data behind Skyrizi and that even minor narrowing could potentially worsen very quickly. I do understand the worries about cancer, but those are potential side effects and very rare. But the chance of the disease worsening is not rare.

Good luck - with whatever your choose. I will keep my fingers crossed for your son!!
 
Yes, I worry about things getting worse too.
I also wish that the antiTNFs had better success rates (and lower immunogenicity).
The doc said things aren't at all dire at this point, but right, we certainly don't want to putz around..
One advantage in this case, though, is that the large intestine can withstand more narrowing than the small intestine can.
I do wonder how long we would need to try to Skyrizi for before knowing whether or not it is working.
 
Wondering also how one chooses between Humira and Remicade (aside from a preference for either injections or infusions)
 
Insurance typically tells you that humira must be tried first and failed since it’s cheaper
Unless there is a specific reason for remicade

my kiddo has been on both
He had a lot more skin issues on remicade
His body was fighting the mouse protein in it
So rashes everywhere (chest ,face ,hands,hair )
He eventually had two reactions back to back after 8 months of remicade and switched to humira
Humira wasn’t approved for kids with crohns at the time only adults
Humira lasted 5 years

honestly it’s just what works for your child
We study and read etc but the body knows what med it will work with
And sadly doesn’t make that known until you try them one at a time

remicade does better with fistulas and accesses
It easier to increase when there weight increases so your getting the same dose regardless of any new weight

with humira it’s always 40 mg
So if the child grows and gains weight
Then they are suddenly getting a smaller dose of mg /kg since the mg can’t change
We played with frequency to try to help
But realistically if you need 40 mg and only weigh 70 lbs (age 9)
It’s unlikely to work at 40 mg every 2 weeks at 140 (age 14)

Stelara is the same way but thankfully my kiddo is mostly done growing /gaining at 19
 
Thanks for your info. My sons are full grown young adults. You spoke to something I have been wondering - with Remicade, is it possible to give the smallest possible dose that is effective (while with Humira you are stuck with the 40 mg dose and can only change frequency)? That seems an advantage of Remicade, though I know my son would prefer shots. I also wonder whether there is an advantage to Humira in that you keep a steadier level in the body, since you get it more frequently.
 
Yes, an advantage of Remicade is the flexibility in dosing. You can raise and lower volume and change dosing schedule.

The anti tif's actually are head of the class with regard to percentage of people they are able to bring to remission. Also, the lymphoma risk that they used to talk about with Remicade and Humira has actually been found to be more associated with 5ASA use rather than anti tnf mono therapy.

Rinvoq is not currently approved for Crohns. It is trials for adults but once approved for adults it will then need to go through pediatric approvals. So it won't be available for pediatric patients for a real long time. Further, the FDA and insurance requires you to fail an anti tnf first before trying Rinvoq. This being said, there is a theory that UC like Crohn's (Crohns confined to the colon) might respond similarly to Rinvoq. This is why they are trying it with my daughter.

Have you read the warning label for Rinvoq?THey list there the risk of lymphoma. It is a scary label and such a new drug so you know there is a lot they are still finding out about it daily. Yes, I have my daughter on the drug but only because she has tried and failed every other option and every combination imaginable. She is seen at one of the country's largest IBD centers by docs who have seen it all and even they were a little reluctant to try it with her. However, given she is young and most of the "bad" outcomes were with older people they lobbied the drug manufacturer for compassionate use. She actually just saw a covering doc today who was shocked she was on Rinvoq with Crohn's and doing o.k.. He said she is the first one he has seen that it sort of worked for. BUT she has a diverting ileostomy so the jury is still out on whether that is what is helping or if it is the drug.

My daughter also has stubborn sigmoid/rectal disease. I am surprised Stelara helped your one son. That's great. They won't even try it with O, unless she gets the colectomy, then that will be the next drug to try to control her small bowel disease.

The one thing I will say about Rinvoq is if it works, it works really quickly. Like literally within two weeks so you wouldn't have to wait long to see if it works. Plus if you abandon it and decide to come back to it down the road you do not have to worry about antibodies….or so they say now…I don't think they know enough.
 
Remicade has standard dosing
5 mg/kg every 8 weeks after the induction phase (6 weeks long with three infusions during those 6 weeks )
Most younger folks need higher dosing
7.5 mg/kg every 6 weeks was what my son was on at age 8
Others need 10 mg/kg every 4 weeks

but you can get into remission then slowly lower the dose or spacing if needed plus get bloodwork at the same time

that said humira shots are portable so no scheduling life around infusion appts (when they can fit you in )
No time missed at school /work
Humira can ship to wherever you are
And stable up to two weeks at room temp
After that once it’s out of the fridge for that long it can’t be put back in the fridge
Just pack a cooler and go on vacation
 
That's really helpful to know.
I wonder if they dose adults by weight. My sons (they are in their early 20s) don't weigh a whole lot (small frames).
I gather there is no way to know ahead of time whether Remicade or Humira would be more effective for colonic Crohn's?
 
They do dose by weight for adults. They are both very effective with Remicade slightly edging out Humira but not by enough that it would make it a slam dunk decision. There was a presentation on the remission percentages at a conference recently. Let me see if I can find it.
 
My kiddos have been on both. I think for IBD, insurance does tend to agree to Remicade - even before Humira. We know LOTS of kids who were put on Remicade before Humira for their IBD. My daughter has a friend (the one who developed stricturing disease) and her preference is trying Humira, but insurance and her GI prefer Remicade. I think it's still used more frequently in IBD than Humira (though both are very effective drugs) and honestly, being able to dose by weight and to change the frequency is a huge advantage.

Also, you can avoid immunogenicity in two ways - one, by therapeutic drug monitoring and making sure your son's trough level of Remicade is where it should be. The other way is adding an immunomodulator like Methotrexate - you typically need quite a low dose just to prevent antibodies (and a higher dose if you're using it therapeutically). For example, if you're using MTX to prevent antibodies, you get away with just 7.5 mg, whereas if you're using it to control disease, it's typically higher - between 15 mg and 25 mg. I have one daughter on 15 mg and the other daughter is on 20 mg, both in addition to biologics. The younger one is on 15 mg of MTX (which we're really using to control her arthritis as well as preventing antibodies) and Remicade. Additionally, sometimes upping the dose of biologics (again to keep the level in the blood steady) can help out-compete antibodies if they're there.

There also have been cases of kids having antibodies and then increasing their dose of Remicade or adding MTX and then the next test showed that there were no antibodies. I think this is @pdx's daughter if I am remembering correctly.

Remicade is more likely to cause antibodies because it's murine - mouse protein. Humira is a humanized protein. So sometimes you will see or hear doctors say that once you're on Remicade, you use it till it stops working because if you stop it, you're more likely to have an allergic reaction or build antibodies to it if you try it again. However, my daughters have been on Remicade multiple times, both without having any issues at all.

My younger daughter has been on Remicade 4 separate times (and has never tested positive for Remicade antibodies). Her arthritis is severe enough that we have tried and failed pretty much every drug option, including combinations of two biologics. So we are re-trying Remicade. She does need a higher dose and more frequent infusions since she has been on it before - she's on 10 mg/kg every 4 weeks. No side effects except she's a little tired the day after the infusion. I will say that when she was in college, she found Remicade infusions somewhat annoying because she had to miss class, however, there are now a lot of kids who have Remicade infusions done at home (or in a dorm!) with a home health nurse.

My daughter has not done Remicade at home, but has done other infusions at home and LOVED it. Remicade has always worked very well for her Crohn's - every time she's been on it, it's put her into remission in months. She recently had completely clean scopes last summer after being on it for 6 months!!

I will also say that my daughter was on experimental high dose Remicade for her arthritis - 20 mg/kg every 4 weeks. I was absolutely terrified of infections and side effects, but she was absolutely fine. No issues at all!

My girls did find Humira more convenient in college - 10 seconds and you're done. One preferred using the auto-injector and the other a syringe. The shot doesn't hurt anymore - it used to be very painful because it has citric acid/citrate in it as a preservative -- just in case you search old posts, you may see a LOT of kids (and adults) found that the pain of the shot was very hard (it really burned when injected). However, now Humira does not have that preservative, so it's relatively painless. But there are biosimilars of Humira coming, and some of them do contain citrate or other preservatives (I have been told that the one biosimilar Amjevita that is on the market already has acetic acid and therefore burns some when injected). I just wanted to mention it because you had said one of your son's did not like injections (or maybe it was just injecting himself?).
 
Thanks for all of the info. You guys are the best.
That's fascinating that your daughter has been able to stop and restart Remicade so many times. That's great that she has had that option.
Thanks for the warning about old posts about Humira burning. I have heard that Remicade burns - is that still true?
 
No, Remicade doesn't burn - it's given intravenously. My daughter says you don't feel it going in. Both my girls have been on Remicade multiple times and Humira multiple times (it took a long time for biologics that weren't anti-TNFs to be approved for the type of arthritis they had, so they have both tried multiple anti-TNFs multiple times). But my younger daughter has had antibodies to Cimzia - not super high levels though - and that was after 4 years of being on it. So it's not that she doesn't build antibodies to anti-TNFs at all, but so far no Remicade antibodies (though I will say we haven't checked recently).

I know some kids/teens/young adults actually much prefer Remicade because often it's just an infusion every 4-8 weeks and they draw the labs right there, so in-between infusions, they don't have to think about their IBD much.

My daughter has two friends that have been on Remicade, one for UC and one for Crohn's, for 12 and 11 years respectively. Both have only needed it every 8 weeks and without MTX. Both have also been in remission for the majority of the time they have been on it - they've had some mild flares, but nothing terrible. It works very well for many IBD patients (as does Humira).
 
Thanks so much for the info. On the one hand, if something would work for my son, that would be so wonderfully fabulous. On the other hand, I'm nervous, because I feel as if we are deciding what medication he will be on for the rest of his life. If he were to start with injections and decide later in his life he would prefer the infusions, would the doctors not want him to switch? Again, at this point, I'm mainly just wanting something to work, and I know the statistics aren't great.
 
You can switch - even if your doctors don't recommend it, they won't necessarily stop you. I don't think you should think about it as a commitment for life - just think about getting your son's disease under control. That's the most important thing. Take it one day at a time. Ask your son what he'd prefer now and ask his doctor what he would recommend right now. If you treat early and aggressively, you can change the course of the disease. I think that's REALLY important to remember too.

Also remember that there are drugs in trials and as he gets older, his options will increase as new drugs get approved. I'm sure there will be biologics that work even better than the ones we have now. I think there will be more oral drugs too - like JAK inhibitors. I would expect drugs like that to get safer and hopefully, more effective.
 
Ditto not to think of it as making a decision for life. You can switch but in our experience many people once they find a drug that works, they won't switch because of a delivery preference. They ride that wave as long as they can. So yes, ask what he prefers right now.

Remicade never burned for either of my girls. They also MUCH preferred the infusions for the reasons Maya mentioned. It is a 1-2 hour trip to the infusion center or a nurse goes to the home and then you are off doing your thing and not thinking about IBD for weeks. Actually, when my younger daughter was going away to college, the GI mentioned if she wanted to switch to Humira for convenience he understood and she said, "NO WAY". She was acutely aware at the limited drug options and the fact that it was unlikely although not impossible to go back to Remicade. Her plan is to squeeze as much life out of Remicade as she can.

Also, let's not forget a cure! When O was diagnosed 13 years ago we only had steroids, azathioprine, methotrexate, Remicade and Humira. Her colon would have been taken out long ago if it weren't for all the drug advancements. Her pediatric GI even said that we should just hope that her disease doesn't out pace drug development. It sort of did but she has lasted a super long time and her sister still has MANY options left should we decide that Remicade isn't working. And we are all still praying for a cure and I truly feel they will find one in our kids' lifetime.
 
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That is SOOOO helpful, Maya 142 and crohnsinct. Thank you. We will just try to focus on getting this under control for now, and yes, let's hear it for a cure in their lifetimes!
 
Kudos to you if you understood my post with all those typo's. I always forget that I have an overly aggressive editor on my phone and don't proof it until it is too late.

True story about my phone editor…..when I try to type God it changes it to GI….I guess I type GI quite frequently.
 
crohnsinct said:
Also, let's not forget a cure! When O was diagnosed 13 years ago we only had steroids, azathioprine, methotrexate, Remicade and Humira. Her colon would have been taken out long ago if it weren't for all the drug advancements. Her pediatric GI even said that we should just hope that her disease doesn't out pace drug development.
Click to expand...
Yes!! M was diagnosed right around then (10 years ago) and it was just Remicade and Humira. I remember being shocked when told us they only used two biologics for IBD. And it took a while for the pediatric community to use the new biologics when they came out - first Entyvio and then Stelara, so it took quite a while before we had options. It feels like we have so many more now - there’s also Simponi for UC and Cimzia for Crohn’s. There’s Xeljanz for UC and Rinvoq is supposed to be approved this year for Crohn’s I believe. And now there’s Skyrizi.

Things have changed a lot now and honestly we really have much safer meds now. They (and by they I mean insurance companies and many doctors) used to make you fail Azathioprine or 6-MP before even considering trying biologics, even though biologics are safer and more effective and have way fewer side effects. So there is lot to be thankful for and I really do have a lot of hope that better treatments are coming and we really may have a cure in our kids’ lifetimes.
 
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