Change Meds, Add Budesonide or Wait Longer?

[BoyMama2000]

My son has been on Stelara for 1.5 years. He begain Jan of 2017.

June of 2017 - It worked well and his Fecalcalprotecin was 222 with scope only showing very mild inflammation in cecum

January Fecal Calprotectin - 1 1147 and 1 950....

Late March 2017 - Scope showed moderate to severe inflammation - most significant in rectum and transverse colon. Blood work showed no antibodies but low Stelara levels so went to every 4 week injections.

July 2018 - FCP was just 650....sort of a gray area I guess. 30% improvement but not sure if that means anything.

He has no side effects on Stelara and it works well since he is a rising Junior in College with just an injection every 4 weeks. He also never has D or symptoms of Crohns so only FCP tells us what is going on.

We will talk to his doctor this week but wanted advice from all of you!

1.The doctor said there is a budesonide for the large intestine now - would it be a good idea to add that in for an 8 week course to see if that boosts the Stelara a bit more and then stick with Stelara and repeat scope in December if FCP's go down? Has anyone done that to "boost" a med. He won't take methotrexate. He did for years and stopped since he is drinking in college. Wish he would take that too but not if he is drinking.

2. Should we stay the course with every 4 week Stelara and see if FCP continues to go down?

3. Should we consider moving to Remicade, Humira or Entyvio? I know Entyvio takes a while but since he lives with 5 other college boys, we were leaning toward that one since it has a lower infection risk.

Thanks for your thoughts...I learn so much from you!

 

[my little penguin]

How long has he been on the every 4 week dosing ??
Ds started Stelara August 2017
But was increased to every 4 weeks end of March 2018

Ds is on mtx plus another biologic for autoinflammatory condition

Steroid boost ??

The infection risk difference between remicade is less than 1% difference
So you may need a a different path
Our ped GI will not use entivyio for Crohns since the success rate is so low

If Stelara isn’t cutting it
You may want remicade
Since compliance can be an issue
Infusions everyone knows when it’s done
Plus bloodwork at the same time

I know you have been trying to avoid remicade and humira due to preceived risks
But leaving inflammation on going increases the risk of ibd complications including death / cancer

Hopefully you find something that works and stops the inflammation
Especially if he won’t take mtx

Will he do een - as a boost ??

Not looking forward to the young adult side

Mine is almost 15
But dealing with it since age 7

No extra infections despite being in elementary school on remicade and humira

My other kiddos got more colds etc...
Than my ibd kid

 

[Maya142]

650 is still quite high. I would definitely be concerned about that. Inflammation can cause all sorts of problems - strictures, abscesses, fistulae and in the long run, colon cancer.

The infection risk is lower with Entyvio but barely. It also does not work well for Crohn's that involves the small bowel, according to our GI. Our GI (who is at a major pediatric IBD center) says that Entyvio is "too weak" and she only uses it for UC or mild Crohn's. And she says that it takes a good 6 months to a year to work.

My daughter has been on all 3 - Remicade, Humira and Entyvio. No issues at all with Remicade or Humira. With Entyvio, she got drug induced lupus but that is very rare. But it really was a horrible experience.

Honestly, I would go with Remicade or Humira. They have been used for Crohn's for almost 20 years now. There is a LOT of research that shows they are safe and that they work.

Remicade is given via IV and has a slightly higher risk of reaction. But if he has severe Crohn's (and if I'm remembering correctly, he had an abscess and fistula in the past right?), then that's what I'd use. It's usually given with Methotrexate to prevent antibodies.

My daughter also tried Budesonide but the type that releases in the small bowel and colon - Entocort. She was on it for over a year. She got CDiff and flared so we had to switch from Entocort to Prednisone. She was able to taper Pred to about 12.5 mg but weren't able to get lower because of Crohn's symptoms. So her GI added back Entocort.

Anyway, at that point, she had been on Entocort for 1.5 years with only a 2 month break. She had also been on and off Pred for years for her arthritis.

She developed both Cushing's syndrome (rapid weight gain, cushingoid, puffy face, buffalo hump of fat on her neck and purple stretch marks) and adrenal insufficiency.

I know that GIs like to claim that Budesonide is much safer than Pred. It is safer. But it's NOT benign. The many endocrinologists we saw all looked at me like I was crazy for saying Budesonide was safe. They consider it a steroid. Steroids are not safe for the long-term. And 9 mg of Entocort is considered to be the same as 40 mg Pred. Sure, less gets into the blood stream, but a certain percentage does.

And that puts you at risk for all sorts of steroid related side effects: Cushings, adrenal insufficiency (which can be fatal if you go into adrenal crisis - my daughter has started to go into adrenal crisis twice), diabetes, cataracts, glaucoma etc.

I would NOT use steroids as a maintenance medication. I would definitely choose Remicade or Humira over steroids + Stelara.

As for an 8 week course - might help, but he is likely to flare at the end of it. So then you are stuck on steroids...which is not good.

I would honestly choose Remicade or Humira. Maybe Humira for the convenience (shots are over in 10 seconds) and you don't necessarily need MTX to prevent antibodies.

With Remicade, you may need MTX, but if the dose is optimized, you might not.

My older daughter went to college while on MTX. Every year in college, she tried to get off MTX so she could drink and not worry. Every time she tried it, she flared.

Her rheumatologist compromised with her and said she could have 1-2 drinks a week. In the beginning (freshman-sophomore years) I would bet she had more than that (she never told me if she did or not). But her liver numbers were followed carefully and were always ok.

As she got older, she stuck to the rule of only a couple drinks a week.

I think you and your son need to sit down with your GI and talk about options.

My younger has lived in dorms for 2 years - first year with 4 other girls, second year with 1 other girl. She has been on TWO biologics - an anti-TNF and an IL-17 inhibitor + an immunomodulator the whole time. No issues with infections though I definitely worried a lot. She gets 1-2 colds a year, maybe a sinus infection too. That's it.

My older daughter lived with 3-4 girls all through college. Always on an Humira + MTX. No issues with infections. She got 1-2 colds a year. That's it.

I send Clorox wipes and tell them to wash their hands a lot but besides that, we don't do anything special.

I will tag crohnsinct since she has a college age daughter on Remicade.

 

[crohnsinct]

Hey there. I have a college daughter and have found myself in almost the same position.

My daughter responded beautifully to Remicade for three years and over the last three has been responding about 80%. She has also had raised fcp into the thousands. Her current GI assumed not enough drug and hit the inflammation with short term prednisone while waiting for the increased in dose and shortened frequency to kick in.

Here is what I have learned and experienced. If you initially respond to a drug, GI's don't like to abandon it quickly because it is obvious that the drug mechanism works for you. There are many studies that show that switching drug class is only 50% effective and should be done only when you are sure the current drug class isn't working anymore. For example, if anti tif drugs work for you then that must be what is driving the disease and switching to an IL12, IL23 drug "may" not work for you or may not work as well. A non existent or low drug level could very well mean that there wasn't enough drug in his body and he simply needs more. It is amazing how much drug these kids need sometimes. My daughter is now up to 15mg/kg every 4 weeks for Remicade.

The fact that the fcp is dropping is encouraging. Stelara takes quite a while to work initially so I am wondering if maybe changes in Stelara also takes while to kick in. FCP's in the 600's is still concerning though so I would want frequent (monthly) testing so you could react quickly if it doesn't continue to drop.

The drug your GI may be talking about is probably Uceris. It could be very useful in helping to get a flare under control to heal the bowel to a point where the maintenance med can take over again. This might help while waiting for a new drug or a new dosing regimen of a current drug to kick in but as has been said it is not a long term solutions for the reasons mentioned. Uceris is designed to be topical and while most of the drug is not absorbed systemically, some is still absorbed.

Are you sure the remaining inflammation is in the bowel? Do you know exactly where? If it is in the sigmoid colon or rectum another option would be adding a foam, suppository or enema. Either a steroid formula or a topical 5ASA formula. We have done this for my daughter as well.

Entyvio is less successful in Crohn's than it is for UC but it has been shown to be successful in treating Crohn's confined to the colon. My nephew failed just about every med and was one step away from having his colon removed but gave Entyvio a try and while it took a long time to kick in, it eventually did and has been working well for three years now. But if he has concurrent small bowel disease I would wonder about that choice. Plus it is a tnf drug so if you are changing drug class I would be inclined to go with Remicade or Humira which are both more successful with Crohn's.

I have two daughters on Remicade. One has been on Remicade 6 1/2 years and the other 2 1/2 years. Neither daughter has had any increase in sickness. MY one daughter shared a bed with her cousin over holiday and her cousin came down with the flew and threw up in the bed. My daughter didn't catch anything. Both girls went on a youth group mission trip (riding in vans for 8 hours, 29 kids in a room). Half the group came back with mono but not my girls and they were both on methotrexate and Remicade at the time. O is in college now and was on both Remicade and Prednisone for much of her freshman year. While she has definitely gotten sick more often it is just the run of the mill sore throat, cold, virus type stuff that all her non Crohn's roommates also had and I have to say even my non Crohn's daughter experienced the same in college.

Good luck with figuring out the next step. Let us know what you and the GI decide to do.

 

[BoyMama2000]

Thanks for the input everyone. My son would like to give the increased dosing of Stelara a try because we just changed this 3 months ago and re-test FCP in 1-2 months. We are going to ask about Ucerus for 8 weeks but may not do it and just see how STelara does. Probably switch to Remi if not trending downward.

 

[BoyMama2000]

We are going to email his GI tonight and wait to hear what they say about the plan. My son wants to just do the Stelara and re-test FCP. If it were me, I think I would do the 8 week course of Uceris or maybe some sort of enema/suppository, re-test FCP every 1-2 months and continue on just Stelara if trending down. If there is a trend up again, switch to remi or humira (likely remi since I suspect he would likely need a lot of humira injections and I like the compliance and bloodwork done with remi). If Stelara continues to work, they will scope when he is home in December to confirm 100% how he is doing. We would love for the 4 week dosing of Stelara to work but totally understand we may need to switch. His Crohns was limited to terminal ileum from age 13-17 but now the terminal ileum is very mild and it is his rectum and transverse colon that are the worst. The colon has massive disease after he got c-diff his freshman year of college. He did have a fistula years ago when his Crohns was only in his ileum and we would hate to deal with that again so a suppository sounds like something to really consider!!! I will let you all know what he and his docs decide. He is really taking an active role this time which I am thrilled about....it is much nicer to be able to discuss what to do with a young adult than making the entire decision for a young child. It sounds like all of us have had to do that and it is nicer to get the input of the person who needs to live with this! I also do like drugs that have been around a while so we will see.

 

[my little penguin]

One other thing for the rectum
Ds was having rectal prolapse /increasing diarrhea while on Stelara
We had drastically reduced his vsl#3 prescription strength
To once a week vs every day
Over a few months
Just re upped the vsl dose to daily
Ds was all for this vs suppositories
So far it’s stopped the diarrhea
Ds still has the suppositories to try if the trend doesn’t continue

3 months isn’t long in Stelara time
5/6 months is a better idea if the higher dose is working

 

[BoyMama2000]

Thanks for this information! Hope things continue to improve for you all!

 

[Maya142]

I would not hesitate to try Uceris for 8 weeks - I just wouldn't stay on it as a maintenance med. That was our big mistake and believe me, we regret it because now my daughter can't use steroids at all and was in the hospital just this past weekend for an adrenal crisis, which was terrifying.

If it's only been 3 months with the higher dose, I can understand wanting to wait. Hopefully the higher dose with the steroids will put him into remission and the higher dose will keep him there.

I would just think VERY carefully about long-term steroids (and by long term I mean months to years, not weeks) because based on what we have heard from many different endocrinologists, they are always harmful.

Would he use a suppository/enema? Because those are good options if he will comply. It's sometimes hard in college because they have hall bathrooms with stalls or roommates - not a lot of privacy.

 

[BoyMama2000]

Thanks for the info on Uceris and enemap/suppository. He was followed closely by an endo because his only symptom of Crohn's initially was growth failure and he was on growth hormone injections for 3 years. He has done entecord 2-3 times but only for 8 weeks each time. That is what we were thinking now to do just as you said. He was on Pred once for 3 months after the c-diff. Thanks for the warning.

He is living at home for the next 4 weeks and will then be in a house with 4 good friends and will have his own room so I think he can handle the suppository/enema. His freshman year, they actually had him in a suite so 4 guys shared one bathroom since he had Crohn's and at that time needed to use wipes to clean since he had several failed abscess surgeries followed by a successful fistulotomy in high school.

He is awful at taking oral meds which is also why I would love him to do the Uceris now with his mom here to remind him!

I am so sorry about your daughter and her experience with steroids. I hope that a mixture of other meds will do the trick. This is such a journey with highs and lows.

 

[BoyMama2000]

Doctor felt FCP was trending in the right direction but did hope it would have been even further improved. Thinks it is reasonable to continue 2-3 more months and re-sched FCP at that time. If the same/worse at that time, look to change meds. Thought adding Uceris was a good idea for 8 weeks and that it would be more beneficial than a suppository. Said to let them know if he has persistent rectal bleeding and then perhaps a suppository. He did have some bright red blood on the outside of the stool we collected for the FCP which is why I was thinking perhaps a suppository was a good idea.


So for now....hope he takes oral meds better at age 20 than at age 17 and do 8 weeks of Uceris and then re-test FCP before he goes back to school. He said he would be able to schedule the induction infusions if he does need to switch....I sure hope so. I was sort of thinking it may be better if he did the change over the summer but thankfully he goes to school only 45 minutes away and we can give him an extra car if needed since he will be able to park for free at his house this year.


Do you think we should ask for an FCP sooner than 2 months? Would there be any value in that other than the off chance we could see a positive or negative trend sooner?

Thanks again everyone!

 

[Maya142]

I'm not sure on the FCP before two months but I did want to say there are several great apps to remind teens/young adults (or anyone really) to take their meds on time. We use PillBoxie. It's great because you put in the pill into a virtual pillbox - you choose the shape and color of the pill which is helpful if your kiddo is taking a LOT of meds - and a reminder pops up on your phone when it is due.

My daughter is pretty good about taking her morning and evening meds because those sets of meds include medications for pain (an NSAID). So if she doesn't take them, she feels it - she gets stiff and sore within half an hour or so. Fortunately (or unfortunately) pain is an excellent reminder.

But for kids who don't have symptoms and aren't taking regular meds for pain, it's harder. My daughter struggled with afternoon meds because she didn't have pain reminding her. That's where Pillboxie came in. The pop-up alerts (with sound!) on her phone really help. And they don't go away till she has gone into the app and ticked that med off her list.

I'm sure there are other apps but this one has worked for us. It also helps to have the medications in an actual pillbox for us.

Good luck!! I hope the Uceris helps!

 

[crohnsinct]

8 weeks is the usual time GI's will wait to see a difference in cal pro so it is not unreasonable, especially since he is feeling well. Just keep an eye on the blood. It could be a hemmie or fissure also so if it picks up to a significant amount I would give a call to the GI.

I feel your pain on getting the kids to remember meds. My college girl is positively awful with that, even with a phone reminder! It is super important to take steroids regularly so with those I actually made her face time me so I got to see her take them. That lasted about a week and she got the idea.

Good luck! I hope this is all simply a matter of Stelara needing more time.

 

[GI Jane]

It's weirdly comforting that others got drug induced Lupis. I got it from Remicade which was sad since it was amazing. Ya couldn't even turn a door knob or put up my and brush my hair and I was still active duty at that time so ya big problem.

I would tell your son that if he can drink tea it looks like whiskey and he can still be social going out or at a party no one will be the wiser. If he can't to avoid anything with mixers. I drink whiskey occasionally on ice. You drink it slowly and the ice helps re-hydrate you. Just a random suggesion.

 

[BoyMama2000]

Well the Imuran definitely is not the drug for him and did cause the low platelets...they went right back up to normal after a week of the drug.

He really still doesn't want to take MTX. He isn't a huge drinker but does exceed 14 per week at times as a college kid and turns 21 next month. I am going to talk to the doctor about finishing the Uceris and continuing the Canasa suppossitories twice a day with the Stelara to see if that gets his rectum under control. Hopefully his sigmoidoscopy will look okay in April so we can continue this in San Fran during his internship this summer and if not, we may just see if he can switch to Remicade monotherapy when he returns in August.

I guess a few more months won't be awful to put this off. I don't want him starting Remicade when working in a city where we don't know anyone and he is working 60-80 hours a week.

Any input would be appreciated...he just doesn't want to risk the liver issue potential with drinking. I imagine when he graduates in May 2020, he will feel differently. He isn't a huge partier so think it will slow down a lot when he graduates.