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Thoughts on stelara or entyvio?

Well we are running out of things to try now that Caitlyn had an allergic reaction to the cimzia.
Has anyone's kids tried stelara or entyvio?
 
I think Brian'sMom has a son on entyvio. Our GI had mentioned entyvio. I know at the time hementioned it the Office was struggling with insurance coverage for it, I can't remember the details. I can only assume the group came to agreement because at C's last remi infusion there was an 18 year old girl getting entyvio.

There is a thread on the forum for both entyvio and stelara. My mobile is acting up but a quick search of thread titles would show them.
 
Yes, my son started entyvio August 8th. The thread on here has all adults and I don't care for it. My son has no bad side effects from the infusions. Its the easiest so far. Its a 30 min infusion. He loves it over all the shots he was getting. As for if it is helping... Jury is out on that. My sons rectum was in such bad shape that they aren't sure anything but surgery will help. The mouth ulcers and his eyes cleared up while on this... His small bowel is still doing good. We head to Mayo in January and they are doing a colonoscopy and we'll know more.
 

Maya142

Moderator
Staff member
Tagging AZMOM - her daughter is on Stelara.
M's rheumatologist had good things to say about Stelara but her GI has never used it. I believe it will be approved for Crohn's quite soon, like within the next year.
 
I myself am on Stelara. They switched me last month from 45 Mg. to 90. I don't feel like it has done much but that is just me.

2
 

AZMOM

Moderator
Overall, we are having a good experience with Stelara. Claire is 11. She is also still on MTX.
 
In case This is helpful... Our Mayo GI had us do another Vedo (Entyvio) yesterday at 4 week Mark instead of 8 week because of the issues we've been having in rectum. They do labs prior to starting it. CRP is 1.7 down from 3.0 and SED is 31, down from 45. We have appt here in KC tomorrow and we have one at Mayo in January. So even tho he had some issues last week... Inflammation is down.... Could Vedo be helping! Also, again... No side effects from infusion. We went to dinner and then to school Christmas band concert afterwards.
 
Our GI just mentioned Vedo when we where there last week. We're currently doing diet/LDN and are re-doing calprotectin and labs in March. Currently ds's calprotectin is around 240 ish but this seemed to be the med the GI was pushing. Although I'd imagine that given that we haven't done any of the other "big guns" it might be a fight to start with this one? Brian'sMom, I hope it is working! It sounds like you guys need a break.
 

AZMOM

Moderator
I think you are right since it is approved for Crohns already. We started Stelara before Entyvio was released.
 
Spoke with Caitlyn's doctor and we are going forward with entyvio. The doctor's office started the process today of getting it approved. Hopefully they will agree to it without to much trouble. Keeping my fingers crossed.
 
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Yes, my son started entyvio August 8th. The thread on here has all adults and I don't care for it. My son has no bad side effects from the infusions. Its the easiest so far. Its a 30 min infusion. He loves it over all the shots he was getting. As for if it is helping... Jury is out on that. My sons rectum was in such bad shape that they aren't sure anything but surgery will help. The mouth ulcers and his eyes cleared up while on this... His small bowel is still doing good. We head to Mayo in January and they are doing a colonoscopy and we'll know more.
Kathy,
I'm hoping you get some good news in January! Sorry to hear that there hasn't been any improvement with the rectum. Praying for you guys.
Cheryl VT
 
tagging vtfamily I believe her son has been on stelera for quite some time now
Hello to all.

Gus started Stelara in February 2013. I can't believe we are coming up on two years with it! That is the longest any medication has remained effective for him, and for that I am very grateful!!

When both Remicade and Humira failed, there weren't any other new Crohn's drugs available. Gus spent a year in a horrible state of limbo while our docs tried to figure something out. Although Stelara wasn't approved for Crohn's, it was our best bet...so we took the leap into the dark. Thankfully, our insurance didn't oppose the treatment.

Even Remicade and Humira seemed to do more to manage Gus' pain than they did to manage his disease. Stelara seems to be controlling both very well. Gus was able to make it through his entire 8th grade year without any pain or hospital days. He has been able to enjoy his freshman year of high school, stronger and more active than ever.

The GI docs are excited about Vido because it was designed for Crohn's. I really hope that it does bring patients the relief they are seeking. If it doesn't, don't be afraid to ask about Stelara too. It hasn't easy for people to get their insurance to approve it, but for those who have been able to make their way through the paperwork, it does seem to be effective.

Gus is 14 years old. He weighs about 89 pounds. His Stelara dosing is 45mg every eight weeks. Our doctor is happy to discuss it with any physician who would like more information on how it is going with a pediatric patient.

Best Wishes to all.
Cheryl VT
 
Hey guys, sorry to but in here, I have no experience w stelara or cimzia, I am on remicade, but just wanted to chime in and let you know there are some other options that the GI's may likely not have mentioned, the first one being anti-map therapy which is a regime of three anti biotics, and has quiet a high efficiency, supposibly higher than remicade and humira.. The other thing for those in the States is cannabis oil, if you get higher cbd and low thc as well as giving it at night it will mitigate any psycho active effects. I must say the oil fixed me right up. Happy holidays and best wishes to all, hope your little ones get better soon! God bless!
 
Problem with MMJ in any form is it's still illegal in most states and not sure how it would effect growing developing bodies.
 
YES to Stelara! My daughter has been on it close to two years and is doing amazing! She failed all other biologics, and was able to have her ileostomy reversed because Stelara cleared up the inflammation in her colon when no other meds would. My insurance covered it also. I would absolutely recommend giving it a try!
 
Problem with MMJ in any form is it's still illegal in most states and not sure how it would effect growing developing bodies.
There is a thread on here somewhere, tagging coltyns family, I think that's the only med they use and he's in complete remission now, he's fairly young too. As for how it effects developing bodies, as long as steps are taken to mitigate the psychoactive effects I'd see it being a lot safer than any crohns pharmaceutical as it's natural. Best wishes to you all whatever paths you take, hope your kiddies find remission very soon!
 

DustyKat

Super Moderator
Thank you for your thoughts and suggestions rollinstone.

Due to marijuana, including MMJ, being illegal in many states/countries and also the concerns of some forum members about the open discussion of marijuana across the forum it was decided by admin some time ago to create a separate forum for MMJ, located here:

http://www.crohnsforum.com/forumdisplay.php?f=63

Normally posts discussing the drug's use are moved to the MMJ forum but since your post is not specifically about MMJ I am happy to leave it here.

I would also like to add a note of caution to any parent thinking about the use of Medical Marijuana for their child. It is imperative that you establish not only the legal status of Medical Marijuana in your state/country but also what implications there may be for you as an adult administering/supplying the drug to a minor. If MMJ is legal where you reside then a prescription from a doctor in the name of your child would cover the legalities of administering MMJ just as it does for any other scheduled drug.

Dusty. :)
 
YES to Stelara! My daughter has been on it close to two years and is doing amazing! She failed all other biologics, and was able to have her ileostomy reversed because Stelara cleared up the inflammation in her colon when no other meds would. My insurance covered it also. I would absolutely recommend giving it a try!
Since there aren't any kids on Vedo here.... I'm stuck looking at the adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel and something about the dosing. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here. I hope I'll be posting soon that Vedo finally kicked in. At least we still have Stelara in the wings... but you all know how hard it is to keep starting over with a new med.
 
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I know exactly what you mean! Well at least soon we will have each other to talk about I with! Keeping our fingers crossed that the insurance approves it quickly.
 
Was on the phone for an hour and a half with the insurance company today about the entyvio. They don't cover it. We are going to have to have our doctor go through a medical necessity appeal which goodness knows how long that will take! I am so annoyed. The Cimzia took six weeks for approval and that was a formulary medication. These I surances are so frustrating!!!!!
 
Sorry you are having to do the insurance fight again. Thanks to both of your kids for being trailblazers in case any of our kids have to go down the same road but I'm truly sorry they have to be. Hoping this is the magic medicine to get them to a long lasting remission
 
My deepest sympathies. It took 3 denials for the doc to say file a grievance.
I haven't done it yet but will start next week.
 
So I was on the phone again with the insurance and her case manager came up with a plan. Since this is an infusion given in a hospital setting she is going to see if they can get it covered through medical benefits instead of pharmacy or combined with pharmacy. Hopefully they will figure something out. Keeping my fingers triple crossed!!!!
 
Our prescription plan will only cover $4000/month for A's medication so our medical insurance covers the rest, minus a monthly co-pay. Our specialty pharmacy was instrumental in getting this coverage approved and they did it fairly quickly. They are awesome! Are you dealing with a specialty pharmacy that can help you out?
 

my little penguin

Moderator
Staff member
They cover remicade at the hospital for Ds through the medical side completely -not the pharmacy side-it was a procedure just like a scope -remicade just happened to be the med given .
That meant we paid x% of the total cost.

Humira is given at home so that is solely through a specialty pharmacy good luck
 
So I was on the phone again with the insurance and her case manager came up with a plan. Since this is an infusion given in a hospital setting she is going to see if they can get it covered through medical benefits instead of pharmacy or combined with pharmacy. Hopefully they will figure something out. Keeping my fingers triple crossed!!!!
That is totally how it is for us. Infusion done in the infusion ctr at the hospital... goes under our medical side of insurance. Only the injections that were delivered to our home were handled under our pharmacy side.
 
You know that is what I thought from the begining that it should be covered by the medical side. Maybe the case manager didn't realix it was an IV med at first, even though I told her it was. Anyway hoping to hear something by Monday!
 
Ditto on the medical coverage here too. All DS's Remicade infusions are covered that way, plus Remistart.

Is there any manufacturer program with Entyvio?
 
Ditto on the medical coverage here too. All DS's Remicade infusions are covered that way, plus Remistart.

Is there any manufacturer program with Entyvio?
They have a program called Entyvio Connect Co Pay Assistance. But you have to be 18 yrs or older. I have exhausted trying to get them to add my son. Cimzia did the same thing but then changed their criteria. The case worker at Entyvio said that since this drug just got FDA approval for adults in June of 2014... they are being very strict so far with the 18yr old guidelines. Let me know if you hear anything different. The phone number for their program is toll free 855-368-9846 and open 8am to 8pm eastern time m-f
 
I guess both. I said to her about the FDA for adults thing; "Well so is Humira and Cimzia and we were allowed into their co pay program" (When we were starting Cimzia Sept of 2013 they also told me the 18 yr old thing but later let us in). She said, "Well, Vedolizumab is so new at the moment, those others have been out longer- keep checking back" -- The case worker I talked to is covers the 913 area code -- Kansas-- She did also say that as more and more kids are started on it (and she said they are) then that could change it too.
 
Makes sense. The insurance companies don't really know what to do with the new meds or protocols in the beginning either. The more people who use them, the more established the protocols and usage become.
 
That is so true!!!! Still waiting for the darn doctors office to send in the referral. Getting super annoyed at this point.
Brian's mom,
What is the starting schedule with entyvio?
 

AZMOM

Moderator
Brian's Mom & kimmidwife & vtfamily -

I'm disappointed to report that we've had another dramatic rise in calprotectin (1156 this week) and arthritis flare in the ankle.

Not sure Stelara will be our silver bullet. :-( Starting with this Friday's dose, we are increasing from 45mg to 60mg. Repeat labs in 2 months.

Crossing my fingers........

Julie

PS I may be asking the entyvio questions sooner than later.
 
I am ready to scream! The doctors office still has Not sent in the paperwork to the insurance company! One little piece of paper they need to fill out and every time I call yes it's being done! I don't know who else to call at this point. I am so frustrated with them!
 
Julie,
I'm so sorry things have taken a turn for the worse. It would be great if the bump in dosage works. Do the docs suspect a build-up of antibodies or something else?
Cheryl VT
 
Hi everyone! I hope you are all having a good weekend. We are still up in the air on the entyvio. I don't know what will happen with it at this point. :( they can't seem to get their act together.
 
Kim, Our insurance took about a month. My husband started a new job in November... so we had to have our new insurance approve. Which they did without problem. (It was even on their 'approved drug list'). Your daughter has had allergic issues (we did with Remicade)... Once you have tried all 3 biologics.. then I think there isn't much resistance to approving use of Entyvio (VEDO). Keep on them. Sometimes its the GI staff, etc. that are the problem.(THey need to state to insurance all that your daughter has tried and her allergic reactions to TNF drugs). Our GI office is part of the hospital so I could call the Pre Authorization dept of the hospital to check on the status. I've been told more than once by KC and Mayo that this drug doesn't have all the warning the others do. It's gut specific and doesn't affect the whole body. I just pray it works for many!!
 
Brian'smom,
The GI office is a huge part of the issue. Now they are saying they are not sure where we can give her the Infusion they have to set it up. I am like you have patients on remix add right? Yes. So wherever remixade is done we can go to do it.
Well it has to be set up it is a New drug etc etc. ugh!
 
Brian'smom,
The GI office is a huge part of the issue. Now they are saying they are not sure where we can give her the Infusion they have to set it up. I am like you have patients on remix add right? Yes. So wherever remixade is done we can go to do it.
Well it has to be set up it is a New drug etc etc. ugh!
Any infusion center can do it. IV... then give drug at rate on instructions! And any pharmacy should know how to mix it and get it ready. That has got to be so frustrating. So are you saying you have pre authorization done... just waiting on where to do it?
 

AZMOM

Moderator
vtfamily - Doc didn't say anything about a build up in antibodies to Stelara. I guess I hadn't even thought about that being an issue! I'll ask. We increased to 60mg Friday without incident. I think she looks pale but I'm paranoid. :ybatty: We are back on supplemental EN because of the falling albumin. (We took a break for the month of December.)

I hate waiting for the other shoe to drop. I wanted this to be our "sliver bullet". We all feel that way with every change though - I know.

kimmidwife - Ride that GI office. Good grief!!!!!!!!!! :ymad:

J.
 
Brian's mom,
We are still waiting for both things. MLP, I wish there was another IBD center nearby. There is basically one left that takes our insurance but she is a single practitioner and is overwhelmed with patients. Her coverage for when she is out of town is not the greatest so I really think we are stuck at this point.
 
Yes she is 16. We are really limited by who takes our insurance. There is only one major IBD center and that is university of Miami. We are currently in their Peds department. We will move up to their adult at some point not sure when or we may look into other adult places. I heard some decent things about Cleveland clinic. I want to wait as long as possible though before moving because one she is not ready to be treated as an adult and two we had a bad experience with the adult GI I we did try already.
Meanwhile there is still no answer on when the infusion will be done. :(
 
Sorry I'm late to the latest updates. I just wanted to send hugs your way! I hope the GI gets their butts in gear and pushes this through for you guys or you are able to find a better option!
 

Maya142

Moderator
Staff member
Poor, poor Caitlyn, I feel like she has been suffering for so long.
I hope her GI's office can get their act together. Ridiculous that you both have to go through this. Sending hugs.
 
I fell your frustration completely! At least Grace gets hers every 8 wks but what their doing to you guys is just crazy! HUGS
 
Caitlyn has an appt Thursday with the doctor and believe me I will be giving them a piece of my mind about how angry I am with this incompetence on their part!!!!!!!
 
Hi All,
So My daughter's doctor called last night. She apologized and said they have been trying to get the entyvio set up but the hospital has been giving them issues because she is under 18 and it is not approved for under 18. :(
Anyway the office is trying to work it out but it is very complicated.
 

Tesscorm

Moderator
Staff member
Ugghh, I hope they can resolve the issues and move on with this! So unfair that Caitlyn must continue to suffer! :ghug:
 
Hi All,
So My daughter's doctor called last night. She apologized and said they have been trying to get the entyvio set up but the hospital has been giving them issues because she is under 18 and it is not approved for under 18. :(
Anyway the office is trying to work it out but it is very complicated.
If she's failed the other ones, Remicade, Humira, Cimzia (which she has) the age shouldn't matter.
 

Maya142

Moderator
Staff member
Is there someone else who could take over fighting with insurance/her doctor's group/the hospital for a while? Your husband, or other family (grandparents?). Or could you ask your insurance for a case manager for Caitlyn, since she is kind of complicated?

Sending hugs:ghug:
 
2 months or just shy of that for our battle with the insurance. I feel for you Kim.

Do you have a case worker at the insurance company.
How about a social worker at the GI clinic?
 
Oh mama:hug: Take a breather and get back at it. Totally understandable why you feel the way you do. But like a prisoner planning a prison break can dig for years before they are free. If they only think about the digging they would give up. But they think about the freedom so they press on. Think about the end result of getting your daughter the drug she needs and her feeling better...not the digging!
 
Thanks all for your support. Caitlyn does have a case manager unfortunately she is only able to help so much. There are a few things complicating everything. But hopefully it will eventually work out.
 
If the FDA has not approved Entyvio for anyone under 18, the insurance company would be hesitant in paying for it because of what it could mean for them legally. Has the GI drowned them in medical evidence showing it's necessary? And is there a 3rd party, an ombudsman, that could take your case? I hope this gets resolved for you soon.
 
Crohnskidmom,
It is not only the insurance giving the issues but also the hospital itself. It is crazy also because we have been traveling back and forth to New Jersey for medical treatments for me. Now we won't be back for a while which has messed things up even more. We were hoping to get the first two doses done before we went back to NJ but it didn't happen. I don't know what to do now.
 

Maya142

Moderator
Staff member
Are you close to Hackensack? We have also heard that there is a good pediatric GI dept at the hospital there (the head of the dept trained at CHOP I believe) but have never been there.
 
Nemours Orlando! Amazing place! A showed me an iMovie she made on her phone this week about her hospital....said that Disney wasn't the only magical place in Orlando!
 
Brain's mom,
This whole thing hias been beyond complicated. It is ridiculous. I have given up at this point.
Hang tough! There has to be a good reason that so many GI docs are excited about Vedo. They just have to help the parents advocate with insurance to make it happen. Unfortunately, subscribers have very little power with the insurance companies alone.

Hug x a million!
Cheryl
 
Maya142,
We had a terrible experience at Hackensack this summer. We will never go back there. MLP I will check it out.
 
Hi all I just wanted to stop in and update. I am in the hospital myself. A little bit of craziness in ,ice. It this was planned so not unexpected. The meds they are giving me are making me extremely loopy so if my typing is a little off please excuse me. I won't be on To much until I am out anyway but I like to check in as much as I can and see what is happening. Hopefully I a a,omg sense here as these meds have me all loopy. Please know I a, thinking of you all and wishing good days for our children!!!!
 
You make complete sense but I have had a drink or two so....

Sorry to hear you are in the hospital again. Glad to hear it was planned and not a surprise. Hope you get better super fast!
 
Crohn's instinct,
I feel like I have had thirty glasses of wine with all

These drugs they are giving me I am so freaking dizzy. I looked up all the meds and every single one has dizziness as a possible side effect WTH!
On the plus side last night I had these crazy dreams from the meds and I dreamed I was on Las Vegas with Jonnie Depp in his movie fear and loathing in Las Vegas!
 

DustyKat

Super Moderator
Can I have some of what you are having? I wouldn’t mind being in Vegas with Johnny flying the Jolly Roger! :eek2:

I hope you are soon on the mend Kim. :ghug: Sending loads of love and healing thoughts your way. :heart:

Dusty. xxx
 
out of la la land and back to reality. I am feeling very weak. No improvement in pain yet. But they said it may take time to see results.
Caitlyn is status quo right now. She is very tired of being on prednisone.
 
Hi everyone!
Haven't had great internet but it seems better today.
I am still very out of it. 😜
But getting better every day.
I have a question, My daughter has been having bright yellow poops. Really yellow. I can't remember ever seeing that before. Does anyone know what it could mean?
I have a call into the doctor but who knows when they will call back.
 

DustyKat

Super Moderator
I’m not sure Kim but this site gives some suggestions:

Yellow Stool

With my two their bile salt malabsorption diarrhoea without using using a bulking agent can produce yellow stool.

Thinking of you both. :heart:

Dusty. xxx
 
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