Stelara and Farmgirl

[Farmwife]

I just got word today that insurance approved for Stelara.
:ywow: yup, shocked it wasn't more of a fight with insurance. However, I'm thankful.:kiss:

The specialty pharmacy called to start the process of delivery.
However with humira I was shown how to give the shot.
Is Stelara the same process?
Did your kid have any side effects?

I told Grace about the new med and
she was so upset to think she wouldn't be seeing her favorite nurses anymore.
Over the 4 years we got to know and care for them all.
They were wonderful at their job.
These kids have to go thru so much. It breaks my heart.

 

[my little penguin]

Farmwife
Stelara loading dose very large dose is an iv infusion
NOT A Shot
Then 8 weeks later it’s by shot
You can’t start with Just the shot for Crohns

Stelara injection is a pre filled plastic outer see syringe
Not different than any other sub q injection
It does have a shield that comes over the needle after the injection is given
Otherwise it’s the same

Doc should be ordering loading dose infusion

 

[my little penguin]

It doesnt really burn
Ds has had injection site reactions of welt
He gets tired after the shot
But that has gotten better with eachshot
Took 6-8 months before it helped

 

[Maya142]

If Grace has been given the arthritis dose, which I suspect she has, the first dose would be a shot.

Again, the arthritis dose is MUCH lower than the Crohn's dose. It is also thought to be too low for psoriatic arthritis and many patients have to have it doubled (which insurance sometimes approves, and sometimes doesn't).

It is 45 mg every 12 weeks for psoriatic arthritis
It is 90 mg every 8 weeks for Crohn's.

Loading for psoriatic arthritis is 45 mg SUBQ at week 0 and 4, then every 12 weeks.
Loading for Crohn's is 260 mg INFUSION for people under 55 kg at week 0.

We have talked to many rheumatologists, including a leading AS researcher. None of them think the psoriatic arthritis dose is high enough to work.

Grace is 9, so she's definitely smaller than a regular adult, but she's still probably going to need a higher dose if she needed that much Remicade to control her arthritis.

 

[Maya142]

Wanted to add, getting Grace involved in doing the shot might help. I know she's pretty young, but she could push the plunger. It really helped my daughters to take control and do their own shot. M was dxed at 12, started doing her own shot at 13, so definitely older than Grace.

But I have seen kids as young as 5-6 give their own shots on the FB arthritis group. There is even one video of a 2 year old basically doing the whole shot by herself!! It's pretty amazing.

 

[Farmwife]

Grace has given herself shots for years
Of course with my supervision
Even during IVs she helps by getting her blood in the viles and taking the IVs out.
She also does her own blood pressures
The nurses are demanding she come work there.

Mlp,
no mention of an infusion for the first one. I'll be calling AGAIN, must clear this up.

 

[Maya142]

Way to go Grace!!! She sounds like a very independent, tough kiddo!!

I would definitely call about the infusion and ask about the Crohn's dose. Is her rheumatologist handling this without consulting her GI?? Because I feel like if her GI is involved, it is more likely you will get the Crohn's dosing, which includes the infusion.

 

[Farmwife]

Maya142
They have always worked together but I can't say for sure yes in this.
I guess I've gotten use to them being in charge and I ASSUME it's done right.
Sigh.... it was a nice break while it lasted.

 

[crohnsinct]

Thatta girl Grace! I will vote yes on her membership to the Control Freak Club...I am sure the president of the club pulls some weight.

 

[Maya142]

Farmwife, definitely follow up. There is such a big difference in dose which could easily mean the difference between flaring and remission.

Plus, we have always found a loading dose helps the med kick in faster and since Stelara takes 6 whole months WITH the infused loading dose, you definitely want her to be given the infusion.

I know her arthritis is worse, which is why the rheumatologist is probably taking the lead on this. Our rheumatologist does that too. But she makes sure M gets the Crohn's dose because it is always higher. For Simponi, for example, she made sure M got the IBD dose (which is double the AS dose). The way she did it was to put down both diagnoses, not just the code for AS. It is only approved for UC, so she used the colitis dx code.

They just have to be creative with the ICD code sometimes, to get whatever it is approved.

 

[my little penguin]

Same here
Rheumo prescribed Stelara
But with the infusion loading dose and the higher Crohns dose

Insurance was funny and called and asked Awhy Did rheumo prescribed Crohns meds

But it was fixed

 

[Farmwife]

:dusty:Insurance approved Stelara:dusty:
It should be here Tuesday. The insurance settled before it went to the board.

Sorry I've been MIA.
We had some bomb shells hit that we weren't prepared for.
1 of them being her Gi says she doesn't have IBD.
We know her EDS had muddled everything and apparently her GI thinks now her EDS is the cause.
We meet the GI's PA (yes, Grace had been passed onto her PA) to go over everything next month.
I've been studying everything I can about bowel involvement in EDS and what the biopsies show. I'm trying to compare them to Grace's biopsies but I'm not a doctor:yfrown: still haven't figured it out.

Meanwhile, Grace has gone down hill in many ways. Not hospital yet but not far away.
She saw blood on her toilet paper today. I'll be keeping an eye on that.
Steroids will be started next week as well.
Mtx had been upped and she's back on pain meds.
The botox helped for her migraine but she still suffers.

She still amazing with her smile and strength but this mama doesn't have much right now.
Hope y'all are doing well.

 

[Maya142]

Poor Grace!!! I'm so sorry to hear all this Farmwife. How are her joints doing? I'm guessing they must be a mess if she is back on pain meds.

I would ask about Celebrex - many GIs say no to NSAIDs if the child has IBD BUT if the kiddo's arthritis is the bigger problem, then an NSAID can be a very valuable medication and can decrease the need for stronger (and more dangerous) pain meds.

There is also evidence that in AS and I would assume in enthesitis related JIA, NSAIDs can actually help prevent progression/joint damage.

However, if she is bleeding, then it may not be allowed right now. But there is no harm in asking about it for the future.

My younger daughter definitely cannot function at all without her NSAID. We use a PPI with it to protect her stomach. It has been a HUGE help.

I hope the steroids will help her too.

Unfortunately, from what I have heard, Stelara takes quite a while to work.

Will she be put on the arthritis dose of Stelara or the IBD dose?

I'm sure you are very overwhelmed right now, but I would consider a second opinion on the IBD. Because if she does not have IBD, that increases your options for the JIA...

 

[Farmwife]

Thanks Maya
Yes her joints inflamed within 2 weeks, well worse then before at least.
Back to wheelchair in town mostly. PT lady is working with her but can see the decline.

Stelara is for jia because her Gi said so. Which made fighting for the drug even harder.
However he will up it when needed. But still not IBD dosing.

 

[Maya142]

Darn...I hate to say this but I really have not heard good things about the arthritis dosing. Every rheumatologist we consulted (and we consulted 7 or so - a mix of pediatric and adult) said they had not had much luck with Stelara at that dose and most said the approved Psoriatic Arthritis (PsA) dose was much too low (and some said it just didn't work for AS, which is what trials eventually found).

But Grace has the advantage of being a child, so she will get more mg per kg than the average adult with PsA.

So I'm guessing they will have her on 45 mg every 12 weeks after the loading dose (which will be shots, not IV ).

Poor kiddo. I am surprised she was put on Stelara over Simponi/Cimzia or even Actemra, if they are questioning the Crohn's diagnosis.

Simponi/Cimzia have a better track record with arthritis and have actually been tried on kids with JIA (both are currently in trials).

But anyway, hopefully it will work for her and quickly. Really sorry to hear she is back to using her wheelchair . I hope the steroids and pain medication will control the pain better.

Fingers and toes crossed that Stelara is her miracle drug :ghug:.

 

[my little penguin]

Ugh poor Grace
Second the dose fir jia is very low at 45 mg per 12 weeks

We saw small improvements in Ds joints with a very large iv dose 250 mg or 300 mg
Something like that and then 90 mg every 8 weeks

But his joints didn’t turn the corner until he got 90 mg every 4 weeks
That took 8 months to get approved
After 4 shots at 90 mg every 4 weeks we are seeingan improvement

 

[pdx]

So sorry to hear that Grace is having such a hard time. I really hope that the steroids bring her some quick relief, and that you can figure out a good long-term plan in the mean-time. :ghug:

 

[Farmwife]

Update :
Grace was able to go to her first week long camp.
It took a prednisone burst but she got there!
Next week is her Stelara shot but so far no changes.
She's only just started.
Then the shots will stretch out to every 8 weeks.
So far not much faith that will work.
GI wise her belly pain is there but not debilitating.... Yet.
Arthritis wise, bad.
EDS wise, constant, of course.

For those wanting to seek a second opinion from Cincinnati Children's Hospital, I thought I detail what we're going thru.

Grace's primary care doctor sent a referral 3 weeks ago.
I received a call one week ago to schedule and appointment with them
Called today (it would have been sooner but my hubby and I got some much needed alone time while the children were away)
I was put thru to a wonderful lady that handles second opinions for the clinic.
She asked a 1000 questions but the main ones were:
1 why are we seeking a second opinion?
2 what testing has she had?
3 asked for Insurance details?
She said she email is a list of things they needed and are going to request from her current GI.
Things like :
1 medical records
2 results of test
She says the next test is for it to be submitted to a doctor and this doctor will decide what G I would be best for my daughter.
However we are requesting a pacific GI, which you can do.
This GI has to do with ehlers-danlos and the effects on her GI system.
Now we wait.

 

[Maya142]

If you're going to Cincinnati, then they have an excellent rheumatology department. If Grace's arthritis is REALLY flaring, I'd get her seen there.

 

[my little penguin]

Glad your going for a second opinion
Pm me if you want more info
Went to GI there twice for second opinions
Make sure to get all pathology slides sent
Even those at dx
As well as a cd of all imaging she had
They can set up coordinating visit with rheumo /Pain management while you are there

Even if your only interested in GI
Well worth the “team” approach

Stelara takes months (at least 6)
So be prepared

One year later
Ds is finally having good joints in it
Per rheumo better than humira
But again high dose high frequency

 

[Maya142]

^Yes they are also supposed to have good pain management. I'd definitely try to see them if you're going to be there.

 

[Maya142]

Wanted to ask - is she getting 45 mg every 8 weeks or 90 mg every 8 weeks?

 

[Farmwife]

Yes, just the 45 every 8 weeks but her rheumatologist said that can be changed. We meet him this week.

 

[Maya142]

I'd push for 90 mg every 8 weeks...that is the IBD dose. May not work, especially if they are now claiming she doesn't have IBD, but it's worth trying. You may be able to get it for arthritis too.