Crohns /arthritis biologics options left

[my little penguin]

Long story short
Insurance deemed that Stelara will soon(few months ) be “non formulary “ which means they won’t cover the drug for anyone
We are pursuing other options
But what options if any are left for crohns /arthritis combo

Ds has already been in remicade (allergic ) and humira (no longer works after 5 plus years )

oniy options I can think of
Simponi Aria
Simponi
Cimizia

entyvio is out since it’s gut specific and his arthritis is worse than crohns

skyrizi is not approved for crohns yet (phase III )

jak inhibitors rinvoc is not approved for crohns yet .... but maybe

any ideas ?
Anything I am missing ???

 

[Pilgrim]

Can you get assistance from the drug company on a compassionate care program?

 

[pdx]

Ugh--really hope that the options you're pursuing come through.

 

[Lisa]

Ugh - hope you can find a viable option to keep using it.....it grinds my gears that insurance companies can arbitrarily make decisions such as this that may end up making people sicker/fall out of remission.....similar to switching people over to biosimilars that are NOT comparable for many if you have been on an 'original' drug.

 

[Maya142]

So you have Simponi Aria (IV Simponi) definitely - it was just approved for JIA.

Simponi (the injections) are approved for adult UC but not Crohn's but Simponi did work for my kiddo's Crohn's. It's also approved for adult AS/Psoriatic arthritis but the injections aren't approved for kids yet. But my kiddo was on it...now I can't remember if she was older than 18 when she was on it, I'll have to check.

You also have Cimzia, which is approved for adult Crohn's and adult AS/Psoriatic arthritis, but no pediatric approvals yet, as far as I know.

Then you also have Xeljanz which is approved for adult UC and JIA.

Tremfya is an IL-23 inhibitor approved for adult PsA and in Crohn's trials I believe.
Skyrizi is not approved for any type of arthritis yet and is only in trials for Crohn's so I think that would be very hard to get insurance to approve it.

 

[Tesscorm]

Ugh! As Pilgrim suggested, I hope the company can help you. Our biologic coordinator (who works with S's GI) has always been quite confident that the biologic manufacturers will help with cost.

I wish I had something more help to offer. I hope you find an answer soon!

 

[Jbungie]

I hope this gets resolved, it sickens me that you have to deal with this when you are having such success.

 

[Maya142]

Wanted to add - my older daughter says Simponi Aria was very easy (30-60 min infusion) and it REALLY helped her for a while. She said the only issue was that the infusions are meant to be 8 weeks apart. Her rheumatologist didn't even bother with that frequency because when S started Simponi Aria, she was REALLY flaring. Both hips were a mess, both ankles were very swollen, MRI of her SI joints showed more damage and bone marrow edema (active inflammation), was very stiff - walking was very difficult.

Her rheumatologist got it approved for every 4 weeks- no idea how. That worked - S thinks it took 8 weeks or so before she felt a LOT better, but she had started improving (less swelling, stiffness) at 2 weeks! Eventually she needed the infusions every 3 weeks and that was an insurance battle but it was approved because she had tried almost everything else at that point.

M was on Simponi injections. Normal dose is 50 mg/4 weeks for JIA, and 100 mg/4 weeks for adult UC. She was put on the 100 mg dose because of her arthritis but her rheumatologist justified it by using her IBD.

The frequency was actually increased at some point because of her arthritis (she was also really flaring, had damage in more joints) to 200 mg. We broke that up into either 100 mg every 2 weeks or 50 mg per week - I don't remember which.

But anyway it worked, but at 4x the normal arthritis dose. It took longer for her to respond though than S who was on the IV formulation.

 

[Scipio]

How about the Remicade biosimilar Inflectra? Those biosimilars are never quite the same as the original;. Perhaps any differences can be useful in case of allergy. Do you know whether your son is also allergic to Inflectra? If his allergy to Remicade is not so severe as to be dangerous, perhaps it is worth trying a dose or two of Inflectra to see how it goes.

You are living my nightmare. I shudder at the thought that my insurance company might one day arbitrarily stop paying for my Stelara.

 

[my little penguin]

INFLECTRA® should not be (re)administered to patients who have experienced a severe hypersensitivity reaction or to patients with hypersensitivity to murine proteins or other components of the product.

more than likely given his bodies ability to react to foreign proteins (also had anaphylaxis to anakinra -kineret which is ecoli protein based ) plus numerous foods ,pollens ,drugs - I would not feel comfortable with inflectra.

But thanks for the idea

 

[my little penguin]

Simponi aria or injectable are both good ideas
Will see what pans out with the current option of trying to stay on Stelara first ...
Trying hard with second insurance
And then what his rheumatologist/Gi recommends if that fails

 

[my little penguin]

So
This
Is why one doe NOT rely on nurses for information
Got the rejection letter

Absolutely nothing to do with formulary status

Insurance suddenly doesn’t want to approve every 4 weeks which seems to be the “new “ pattern across the boards even in someone who proved every 8 didn’t work and got approval a few years ago

Which is a different kettle of fish

still only has Stelara approved at every 4 weeks for a few months

 

[Jo-mom]

I'm so sorry you have to deal with this when your son is doing so well. There shouldn't be a battle when it comes to health - money shouldn't be an issue for insurance companies but unfortunately it seems to be. I do hope you don't have to lose a lot of sleep to get this resolved. Good luck.

 

[cmack]

I wish you the very best, MLP. I really wish this wasn't happening to your bunch, or anyone else for that matter. I think I know what I would do. I'm no pro, but I would try compassionate care through the manufacturer. XX

 

[Pilgrim]

Absolutely try to work through their program. There may be a way to get help funding the doses that aren't covered by insurance. It's arguably a win-win in that situation.