• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Using Stelara For Children With Crohn's

Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!
 
Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!
:ylol::ylol: Made me laugh! Thanks
 
Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!
I am so using this! Absolutely true!
 
I cried when i read Gus' s chapter. His story is very similar to Brian's with the no food and sitting and listenjng to how bad the area in bowel is. Please read my new thread Its too long to put here also. Brian could only have water or Gatorade with een and now tpn thru pic line. He silently is just doing it. He can swish out his mouth but can't swallow anything. Was Gus's septic shock from the picc line?

We would tell our son, "Eat! Thats why you are so thin. If you want to get bigger you know what you need to do". He was young...i think he didnt even know why he wasnt eating. He even told me last year when i was questioning how bad his cramps were, "Mom, everyone hurts a little when they poop. Thats normal, right? Do you not have even a little pain everytime?" I don't. ... I'm sad for him. That's awful
 
BriansMom,

Yes, ultimately he did go into septic shock. The docs explained we all have staph on our skin, all of the time. It usually goes unnoticed...until it gets inside the body then it is serious, deathly seriious. PICC lines do give staph that "window of opportunity." That is why the hygiene procedures are so important. I have my suspicions as to when/how it happened. If Gus ever needs complete gut rest and a PICC line again, I won't say no BUT I will most certainly have more questions/requests. One of the important issues for us was that our local clinic cannot flush a blocked PICC line in a child. Not in Peds, not in Urgent Care, not even in the infusion center. We would have to drive 100 miles to the hospital for that. Gus' line would work fine to infuse the TPN into his body. It was the draw backs that were difficult. I think it was those blood clots at the end of the line that gave the staph a place to grow.


I'll look into your thread! It would be super if we could get Brian and Gus talking!!!

Cheryl VT
 
I don't understand, sorry. You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.
 
You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.
Giving the TPN infusion was never a problem. It always went in fine.

There are two opinions on drawing back. One is don't do it because it pulls blood into the line, which may then clot. The other is to do it to verify that a clot has not already formed at the end of the tube. Hard to say which is "best." Seems like two sides of the same coin to me.

My process was to flush both lines with saline first. Then do a draw back, just enough to see a tiny bit of blood. Then flush again. Run the TPN infusion. Upon disconnection, flush again and put the heparin in the lines, and end by capping-off.

The nurses did a draw back on the line every time they touched it when we were in the hospital. It wasn't part of our PICC line training, so I didn't do it for the first couple of weeks. The first time the nurse couldn't do a draw back check during a dressing change after we came home, I was trained how to do it and was told why it was important. So I did it from then on.

We had a nurse come to the house to do dressing changes until Gus returned to school. I would take Gus to our local clinic for dressing changes after that. Although there were a couple of times when I had to do the dressing change myself. I was really afraid at first because there is so much at stake, but it really isn't rocket science and it was fine.

I can't be 100% positive about how he acquired the bacterial (staph) infection. Checking temp a few times after doing the dressing change sounds like good advice.

My hind sight observation is that we need to be able to de-clot the line locally, when necessary. Having to take him to the hospital (100 miles away) for a nurse to push a de-clotting agent through the line seems like an unnecessary step.

Hope that helps.
Cheryl VT
 
ONE FULL YEAR ON STELARA!

I almost can't believe it. Today Gus received his eighth injection. He told the doctor he can't remember a time when he felt as good as he does right now. Doc is pleased with Gus' status. Gus is happy. What more can a mommy ask for!?!?

No telling how long this will last. Just enjoying it moment by moment. :)

Felling pretty blessed today. Thank you Stelara!
 

DustyKat

Super Moderator
Wow! That is fabulous Cheryl! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

And how brilliant that Gus is feeling on top of the world! Bless his :heart: May it just keep on keeping on. Onwards and Upwards! :thumleft:

:mademyday:

Dusty. xxx
 
Cheryl,
SO SO happy for you & Gus!!! Yes enjoy this!!!! It's so wonderful to hear that you are on the straight and narrow after the winding Rocky Mountain cliff you have traveled! It's been a long road that's for sure, but here you are.
And to have a happy boy who is feeling good...nothing will give mama a good nights sleep like that will!
 
I LOVE that he notices it and appreciates it. What a great kid!

Since he is feeling so great can you ask for a clean room? And if it's already clean then you can't ask for anything more...you have the perfect kid! A tribute to great parenting I am sure.
 
Saw the GI today. Looks like Stelara has "stalled" as a Crohn's drug. Gus continues to do very well with the Stelara, but a spin-off of Tysabri (affectionately called "Vido") is taking the lead in the anti-adhesion category and most doctors are going that direction. In fact, anti adhesions may replace 6MP and the like!

We are going to stick with Stelara for Gus, but it is comforting to know that Vido will be ready IF he needs it in the future. It's nice to have a plan "B" again. :)
 

Maya142

Moderator
Staff member
vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.
 
vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.
Sorry...stalled, as in GI docs are really excited about Vido (Vedolizumab) and looking ahead to Vido instead of Stelara. Both are same family of drug, anti-adhesion, the same way Remicade and Humira are different but in the same family of anti-TNF drugs. The appeal is the lower major risk factors as compared to current Crohn's drugs...and we all know those can cause sleepless nights.

Gus has Crohn's, just turned 14, and has been on Stelara for about 16 months. Nothing else worked to control his disease. He had the best school year ever this year. He says he feels like a regular kid! So, I am a HUGE fan and would say "go for it."

Not many docs have experience with Stelara for Crohn's, especially peds Crohn's. Our doc is happy to discuss with any doc looking for experience with actual patient. :)

Sorry if I scared you. Personally, I'd like to see the medical community pursue both drugs as options for us since Crohn's is not a "one size fits all" disease.

Best wishes for you and your daughter.
Cheryl VT
 
Morning!

Another fan of Stelara here! My daughter has been on it over a year now, and after her last scope, her colon has looked better than it ever has! The Stelara is definitely working! :)
 
Ahhhh....so happy to hear these updates! Liv is still going strong on the Stelara as well! It is nice to know there are other options available, but for now we will continue with Stelara!!
 

AZMOM

Moderator
We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!? :ybatty:

J.
 
Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.
 

Maya142

Moderator
Staff member
Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.
 
We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!? :ybatty:

J.
We didn't have the option of waiting for Vedo either. Stelara has been a real blessing...even if Gus had to be the first kid in L.A. to use it.
 
Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.
Kathy,

It's good to hear from you. Hope Brian is doing well. Was thinking about you the other day. Hope the follow-up goes well for you!

I think the lack of excitement around Stelara is because so few Crohn's patients are using it and it still carries TB risk. Whereas Vedo uses the same mechanism and has lower TB and lymphoma risks than other meds...as well as blocking the PML/JK virus risk of Tysabri. I understand the excitement, but I hope the GI community will continue to consider/use Stelara. Remicade wasn't tossed aside when Humira came on the scene! Many people benefited from both and I am sure that will be the case with Stelara and Vedo.

Keep us posted about Brian.

Cheryl VT
 
Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.
So true about the favorites!

We were fortunate to not have to wait for the Stelara approval to begin using it. I shudder to think what we would have done without it for the past year.

:)
 

AZMOM

Moderator
Cheryl - I hear ya. Claire is the first at Vanderbilt children's.

I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read.

Read the two paragraphs before the FDA medwatch #.

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm398065.htm

Now ALL THAT ASIDE - if I were to the place that my child was not doing well and this was my best option. I would not be deterred by a maybe.

Like Maya, we've got a lot of arthritis issues, so maybe that's why we went Stelara first.

Hugs,

J.
 

AZMOM

Moderator
Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.
 
Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.
Hugs to Claire. Painful meds are no fun for sure.

Gus said the Humira was the worst, most painful, of all the meds and the burn would linger for 30 to 40 minutes. He felt Stelara was better than Humira in that regard. He also said the Stelara injections don't hurt or bother him anymore. So, the good news is that she may find it isn't so painful down the road.

Cheryl VT
 
Some have said that Humira isn't that bad... but Brian said it was liquid Fire!! It didn't last long either. But that 's what I worry about Stelara. These kids are so tough... why do the meds have to burn??!! Cimzia is 2 syringes with 200 mg each... its thick--so they go in slow. He says he'd take those over Humira any day... so I guess that gives me insight on how it felt.

J-Claire hasn't ever had Humira because of the TNF part right? I'd like to hear another comparison of the two from a kids point of view.
 

Maya142

Moderator
Staff member
Thanks J! I was so hoping it wouldn't burn! M hated Humira but it really helped her so she got used to it. She also used to complain that is really burned.

I don't know if this is true but one doctor said they might be coming out with an IV version of Stelara. I know some of trials for Crohn's were done with IV Stelara. Don't tell your kids yet though, because I'm not sure and don't want to get their hopes up!
 
The UK trial of Stelera is infusion based for the first part. The later parts are injection based. So yes it is possible to get Stelera as an infusion.
 

AZMOM

Moderator
Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara).

We were never offered an IV infusion option?????

J.
 

my little penguin

Moderator
Staff member
The thing to remember is if its available by injection most inssurance will probably not pay for the increase $$$ due to infusion ..
Will lidocaine help the burn with stelera ??
I know it helps some for humira ( but still burns per DS ).
 

Maya142

Moderator
Staff member
It's not out just yet J, some of the phase III trials for Crohn's were done as infusions. For psoriasis and psoriatic arthritis (which are approved) only the shot is available.
 

AZMOM

Moderator
MLP - I haven't worried much about the lidocaine. We have to get through one more loading dose (the big one) and then it will only be every 8 weeks. I'm figuring with everything else she's tolerated - a 10 sec (at the most) burn every 2 months will seem like child's play. Seems sad, right????

J.
 
Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?
 
Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?
Hope you don't hit any road blocks with insurance.

Gus has been on it for a year and a half and is still doing really well.

Best wishes,
Cheryl VT
 
The hospital does the process for me. The company that handles it is the same one that handled getting us approved for Remicade called BioAdvance. The manage all that directly. Now the concern will be the 20% not covered by insurance.

Gus has had resections, no? D is really scared of having the surgery as we were told from the GI it will most likely be permanent (no j-pouch)
 
Gus has done very well with the Stelara. No reactions. He said it burns for a few seconds, but nothing like the intensity or duration that Humira stung.

20% wow! The cost for the 45mg dose here is $5,000. I don't know how we would ever be able to cover $1,000 for every injection.

I really hope it works for D. I'm all for avoiding surgery whenever possible!!
 
OMG I so hope it is cheaper here! I can not afford $1,000 a shot. Humira had a plan that just accepted the 80% and waved the 20% fee. BioAdvance wasn't so good on that for Remicade and only granted it for a year. D was only on Remicade for 7 months before she went off so I never found out what happened after a year. The doc was talking about aggressively dosing her but I got confused with all the info. How often are the dosages for Gus?
 
Gus takes the Stelara (45mg dose) every two months.

It seems so strange (in a good way) only having to see the doctor every two months, with no other concerns, pain events or hospitalizations in between. :)
 
Just got off the phone with the hospital. Based upon her allergies to medications and her anyphalaxis reaction to Remicade they don't want her on Stelara. They just got the report from her 1st GI on the reaction because I mentioned it and the new GI didn't know it was that severe. Another med crossed off the list. :(

Trying Simponi instead. Not approved for kids yet is all I know. Time to switch into new research.
 

Maya142

Moderator
Staff member
SupportiveMom - My older daughter has been on Simponi (for AS not IBD). She was on the injection and did quite well on it (for a while). She got the 50mg dose every 3 weeks (it's usually given every 4 weeks for arthritis, the dose is higher for Ulcerative Colitis -100mg I think). The good news is that the injection is NOT at all like Humira- S said it did not burn at all!

There is also an infusion (called Simponi Aria) available but that is so far only approved for Rheumatoid Arthritis.

We have looked at Simponi for M, for both the AS and Crohn's. Some GI's are using it off-label for Crohn's. In M's case, we would do the infusion, Simponi Aria, because her doctor prefers the flexibility of it and has been able to get insurance to approve it for older teenagers (since it's not approved for kids yet). If high dose Remicade does not work, we're thinking either Simponi or Stelara.
 

Maya142

Moderator
Staff member
Simponi is almost approved for Juvenile Idiopathic Arthritis and has been through many trials on kids (in Phase III right now), so don't worry about it not being approved for kids. Pediatric rheumatologists also have been using off-label for a while - it has been suggested for M for two years now!
 
The BioAdvance coordinator felt very confident it would be approved. She & 1 other colleague deals with all of SickKids approvals in the IBD dept. I found it annoying to do the infusions and much prefer administering at home if that continues to be an option. Her dosage is 2 pens at loading dose, 1 pen every 2 weeks. I hope you are right on the no burn. D cried every time I did it. They also cover the remaining 20% our insurance doesn't cover!
 

Maya142

Moderator
Staff member
S iced the first time, and by the second time did not bother icing at all. She used both the syringe and the pen (insurance messed up and sent the syringe for the first two months).

She said the syringe hurt less, but the pen really was not like Humira and didn't bother her at all (the needle hurts of course, but medication itself doesn't burn).

We were told the same doses for M (100mg) - if we do it, I'd also prefer injections over infusions (so much more convenient!) but her doctor will decide.
 
Another school year has begun.

Gus' summer labs looked good. No signs of inflammation or new strictures. It looks like the Stelara continues to do well with managing both the pain and the disease.

It looks like he will be able to enjoy his first year of high school "like a regular kid."

What a busy year it will be too! He is carrying a full load of academic classes, with band an hour before school begins and cheer/yell leader (which counts for PE) until 5pm three days per week. Long days, but on the plus side, I hope he will be able to put himself ahead of the curve...just in case he has to slow down due to a flare in the future.

He has such a positive expectation for the year, it is making me positively giddy!
 

AZMOM

Moderator
Yay Gus' Mom! I love giddy!

We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good.

Claire gets dose 4 in a couple of weeks.

J.
 
Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!! :)
 
I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here).
Awww Kathy, I just want to give you a big hug! :hug: I know that you and Brian are having a really tough time. I wish there was something more I could do to help.

You are right, from what I can tell, the Pediatric GIs are very excited about Vedo because it was designed for Crohn's, not something else. Since it has the same working mechanism as Stelara (anti-adhesion), I am hopeful that Brian will have success with it.

I think the genetic history is a great idea. More and more work is being done with genetics for unlocking the mysteries of IBD. I actually approached our doctor with similar questions when we first learned that the Humira had stopped working. I made a family tree chart of inflammatory and autoimmune diseases. Our doc wasn't sure what to do with it at the time, but my rationale was that the information in the tree could suggest a treatment path based on Gus' gene pool.

My paternal grandmother had MS (which is what Tysabri was designed for originally), so I wondered if Tysabri could be effective for Gus. I have psoriasis. It would be interesting if we could make an objective correlation between Gus' success and family history. How much easier would it be to find an effective treatment path if there was a correlation with the family inflammatory/autoimmune history.

Keep us posted Kathy. Lots of hugs and prays going out your way!!
Cheryl VT
 

Maya142

Moderator
Staff member
Stelara is actually an IL 12 and IL 23 inhibitor, which is different from anti-adhesion. They're actually completely different - Vedolizumab is gut specific and Stelara is not (which is why it works for psoriasis and psoriatic arthritis).

Vedolizumab binds exclusively to the α4β7 integrin, a primary mediator of gastrointestinal inflammation. It lessens inflammation in the gastrointestinal tract by selectively inhibiting the entry of inflammation-stimulating lymphocytes into the gastrointestinal tract without blocking systemic adaptive immunity.
Ustekinumab is a human immunoglobulin G1 (IgG1) antibody directed against the p40 subunit of IL-12 and IL-23 cytokines
The gene IL23R is actually associated with IBD, psoriasis and Ankylosing Spondylitis, which is why so many doctors are very hopeful about Stelara (even though it is currently approved for only psoriasis and psoriatic arthritis).
 
Cheryl,
I'll take that big hug!! :)

Maya, I'm not sure if I heard our GI right, But he said one reason its not approved yet for crohn's is dosing. I could be so wrong.

The research for both sound good. Like they both should work. I like that Stelara is systemic. But GI's seem to like that Vedo is Specific. I guess we have to go with what our doctors say to do. I really pushed for Stelara... so I know he knew my opinion!! Oh well, we see what happens from here. I hope and pray they both work... Then each of us have another option down the road.
 

Maya142

Moderator
Staff member
I don't know much about Entyvio Brian'sMom, but I hope it will work for your son! I've heard it works very well for Ulcerative Colitis - perhaps since Brian has issues in his rectum, it will work well for him too? He has been through so much, he really deserves a long long break from all of this.

I think Phase III trials are when they figure out dosing, but I could be wrong. Since it isn't approved yet, it does seem like doctors sort of "make up" the dosing for each individual patient with IBD! We were told 2015 for Stelara's approval... which is not so far away, so maybe we'll know more soon.
 
My daughter was put on Stelara before Vedolizumab came out after failing all other Biologics. Stelara has been GREAT for her! She was able to have her ileostomy reversed, and the pics of her colon looked the best it had looked in two years since before starting Stelara. The thing we are dealing with now is a colon stricture! She has to be very careful with what she eats, but I am trying to look up holistic type things that might be able to help with that too! It's never ending!
 
Thanks Maya 142. I'll have to clarify the details with our doc next time we see him.

Whatever the mechanism, it is doing a great job for Gus. Though it would be great to be able to connect the dots between WHY some meds work, where others do not on a one to one basis.
 

AZMOM

Moderator
Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!! :)
You are not a hijacker! We love you, mama. Vedo was our plan B. We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers. Many insurance companies won't cover it because using it for Crohn's right now is technically "off label". Because of Claire's arthritis problems, I suspect, our insurance didn't fight with us.

Claire is her GIs first patient on it but some of the adult GI docs at Vandy had patients doing well on Stelara. Her doc talked with the folks at Stelara about the dosing, his colleagues at Vandy and some pediatric colleagues at Cinncy. I was nervous nelly about the dosing process but I have calmed down. (well, my version of calm :ybatty:). He said the same thing about 12 week loading cycle like Vedo.

Big hug and plenty of prayers for your sweet boy.

J.
 
I'm happy to report that Gus' freshman year of high school is going well, even with his crazy schedule (6:45am band to 5pm cheer, later on game days). He has the energy to keep going all day and to keep up with his homework too. He is stronger and more engaged than he has been in years.

His labs continue to look good, not that labs ever tell the true story for him. He remains pain free, a better indicator of his Crohn's being controlled. Puberty has finally begun and he is growing, gaining weight and even has hair in some new places. :)

I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.

I know Vido is the new "it" drug for Crohn's. I really do hope that it brings relief to those who need it so desperately. But, just in case another option is needed...I'd definitely keep an open mind to Stelara.

Looking forward to a very happy new year indeed!
 

DustyKat

Super Moderator
I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.
This is brilliant! and surely has…:mademyday:…I am so very happy for you both. :)

I often ponder this question myself and I am leading toward thinking in these cases there is a complementary effect between the genetics and the drug. Hopefully in years to come there will be more personalised medicine.

Onwards and Upwards Gus and may the good times last a lifetime! :ghug:

Dusty. xxx
 
Same here with Kayla and Stelara! She continues to do so well on it after failing all other meds! So happy we were given the opportunity for her to be on it off label, and that our insurance company covers the cost too! Here's hoping both Kayla and Gus continue to stay in remission on Stelara! Happy New Year!!
 

Maya142

Moderator
Staff member
We see a researcher who focuses on AS who recently told us that for AS IL-23 is the target to block. There's a new IL-23 dug (not Stelara) that will come out in 2016 (or around 2016) that he is very excited about - he says it will work much better than Stelara!

Since AS and Crohn's are related, perhaps that's why for some patients with Crohn's IL-23 inhibitors work like magic?
 
Hello! Both of my kids are now on Stelara. Olivia is going on 2 years this April and is doing great,,,except for a few bumps in the road recently. She was very stressed during college finals and was not eating very healthy with her crazy study hours ect,,,, her recent labs have slipped a little with a slight inrcrease in CRP and low albumin. Her thyroid labs (which is a good indicater of a flare) were way off again...surely not absorbing her hormone replacement and had to increase her dose. She has complained of occassional cramping and bloating and has had 2 recent episodes of blood with BM, and now has a mouth ulcer. Hmmmm...most definitely a mild flare. Liv usually has disease activity this time of the year...cyclic for both kids. She has also just recently started on birth control pills to help with painful, heavy menses that cause her severe nausea, vomiting and headaches every month. The pills have helped with her dysmennorhea, but I cant help but think the hormones may be messing with her CD and possibly causing this mini flare???? She has been having no issues with the Stelara...GI wants to scope her after her next semester is over just to have a look inside. She has not had a scope since starting the Stelara. Praying things look good and she could continue with this drug.

My son started Stelara 3 months ago after using Cimzia for 18 months with absolutely no effect on his CD. Prior to that he had been on Remicade for almost 2 years with good control until he developed antibodies and became symptomatic again. He sees an Adult GI who is the chief MD of the practice and was uncomfortable prescribing the drug. Both of my kids are the first patients on Stelara for both of their MD's. She initially wanted Trevor to start Humira, but we begged her to prescribe the Stelara because Liv was doing so well with it. After some research on dosing, ect... she agreed to let him try it. I was thrilled when our insurance company agreed to cover the drug for both kids and so far so good. Symptoms have been slowly decreasing (Stelara took 7 months to work for Liv) and he has had zero side effects with it. His labs have been normal, except for some ongoing anemia that developed when he was on Cimzia and he continued to bleed on and off for the entire time...the only thing that stopped the constant bleeding were steroids. Since starting Stelara, he has been able to wean from steroids...bleeding has stopped. I am keeping everthing crossed for both of my children that Stelara contines to work... So happy to hear such great updates from everyone!!! Happy New Year!! Kim
 
Since there aren't any kids on Vedo on here.... I'm stuck looking at the adult thread. You all know how kids handle this disease compared to adults. It's all complain, complain, complain on that adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here.
 
Stelara is still doing the trick for Gus!

Puberty is (finally) in full swing. He has grown 4" in 15 months, amazing for him. He has a 24/7 appetite, pimples, and a voice that cracks. Gives me warm mommy fuzzies.

He managed to make it through his entire freshman year, rough schedule, higher expectations, stress and all...without a flare! Can I just say A-M-A-Z-I-N-G!!!

He will be on the cheer squad again next year, as the lone yell leader. Cheer has been awesome for him. It is something physical that he CAN do and it provides an wonderful opportunity for social inclusion. They just finished pink week...not easy for the male member of the group. He won the spirit award for wearing his "Tough Guys Wear Pink" shirt and dying his hair pink. Love it when he beats the girls on their turf! They leave for cheer camp on Monday. Can't wait to see the new moves. :dusty:

Gus is still the only local kid on Stelara for Crohn's. The Peds GI docs have all turned their attention to Vedo instead. I really hope those kids find the same success as Gus has had.

In fact, life has become so "normal," I'm starting to look into forming a local support group. The closest one to us is over an hour away. We'll just have to wait and see how that goes.

Happy summer to one and all.
Cheryl VT
 

Maya142

Moderator
Staff member
What wonderful news!! Love hearing about kids doing well on new meds!

PS - Love the picture! Gus is so grown up!
 
Hi everyone. VTfamily here. Gus is doing GREAT! Stelara has been amazing for him. Was actually just counting and realized we are going on six years on Stelara now. I wish I knew why Stelara worked when the Crohn's drugs didn't. I think that type of knowledge would make a difference for so many people. Now that Stelara has been approved for Crohn's I hope that more GI docs will be open to using it.

Hugs. Cheryl VT
 

my little penguin

Moderator
Staff member
Vtfamily
Our GI said they are starting more kids on Stelara instead of enytvio since entivyio was only working “WELL” for their UC patients

So hopefully they will know more soon
 
MLP,
How is your son doing on Stelara? Caitlyn is doing well on it. Best she has done on any drug. I just wish we could get her pain under control.
 

my little penguin

Moderator
Staff member
Ds is only at 4 months on the drug
He was just switched to every 4 weeks to try and get his arthritis under control
He has been able to finally wean off steriods
So improving some
He will have scopes and imaging of GI /joints at the six month mark

Glad C is doing well
Pain is tricky
Hope the pain program works for her
 

Maya142

Moderator
Staff member
Pain is REALLY tough. Do you have a date for the pain program yet?? I hope they can get Caitlyn in soon. I would not expect an immediate reduction in pain with the program, but usually as they become more functional, over the next few months, they start to feel better.

Sending hugs to Caitlyn. I'm glad her Crohn's is doing well.
 
Top