Starting Stelara

[DougUte]

It's been a long time since posting here. I have been on Entyvio since February 2018. Entyvio is slowly failing me. I've had severe diarrhea. Including wearing depends. Had a CT scan. Which found inflammation in the colon. My GI's PA has started the process of getting Stelara approved. The insurance has been playing Doctor. We were denied when we requested entyvio every 6 weeks. I am waiting to hear if they approve Stelara.

 

[Scipio]

Good luck with your insurance. I've been pretty pleased with Stelara since starting it more than 5 years ago. My Crohn's is not completely abolished by the Stelara. There is still some residual inflammation in the ileum that is detectable by colonoscopy and occasional brief bouts of minor pain in the same location. But except for that I'm able to lead a normal, Crohn's-free life thanks to the drug.

 

[my little penguin]

Same here -my kiddo started Stelara in 2017
Insurance required every 8 weeks for 8 months and new scope/imaging to prove it wasn’t enough in 2018
Switched every 4 weeks after proof from scopes /imaging
Same issue three years later insurance required proof he still required every 4 weeks
Ds tried 6 weeks per Gi request
Small flare /fecal cal /bloodwork etc
So insurance approved 4 weeks again
Hopefully it works well for you and insurance approves it soon
Good luck

 

[DougUte]

Well guess what? My insurance has denied Stelara. They are requiring that I go on Renalsis, a Remicade biosimilar. If after 8 weeks that hasn't worked they will approve Stelara. I hate insurance companies.

 

[my little penguin]

Ugh…
Have you ever been on remicade or humira before ??
I know for ds we had to step up therapy for insurance and fail each and every one of them
From 5asa’s ,immunosuppressants, and then each biologic
At least it’s only 8 weeks
Remicade might work
Ds was only on that one 8 months
Worked well -just had two back to back allergic reactions so ….

 

[DougUte]

The first biologic I was on was Humira. In 2018 it failed due to antibodies I built up. At that time my Dr told me he would not prescribe Remicade because it is also a TNF blocker and the antibodies would work against Remicade as well.

 

[my little penguin]

My kiddo had an allergic reaction to remicade x2 (antibodies against it we were told )
But was still able to take humira without issues for 5 years after that until it stopped working
So maybe remicade will work ..

 

[DougUte]

My kiddo had an allergic reaction to remicade x2 (antibodies against it we were told )
But was still able to take humira without issues for 5 years after that until it stopped working
So maybe remicade will work ..

Believe me, I hope so. This flare is very bad.

 

[my little penguin]

One thought
You could ask Gi for antibody test for remicade
Odds are it will be negative
But if positive the doc could push back on possible allergic reaction
Antibodies are to the protein
They use to put the anti tnf on
Humira is some other weird thing but humanized further (hence humira name )
Remicade is murine protein (mouse ) - has actual mouse dna
Remicade has much higher antibody allergic reactions due to the mouse protein

 

[Pangolin]

You should be able to appeal and win by giving them evidence that you tried Humira and that it failed. You may also need to point out that Remicade and Humira both have the same mechanism of action.

 

[Maya142]

The first biologic I was on was Humira. In 2018 it failed due to antibodies I built up. At that time my Dr told me he would not prescribe Remicade because it is also a TNF blocker and the antibodies would work against Remicade as well.

I have never heard that before - that antibodies to one anti-TNF will work against antibodies to another. We've always been told that antibodies are very specific. My daughters have both been on multiple TNF inhibitors and they all worked for some time - sometimes for years. My younger one started Remicade for the 4th time 6 months ago (she ran out of drug options), and while she has needed a high dose, she is doing much better on it - both her arthritis and her IBD. She has never had an allergic reaction to Remicade and her antibody tests done in the past have been negative. We'll be doing an antibody and levels test with her next infusion, so we'll know if she's developed them.

But she does have antibodies to a different anti-TNF - Cimzia. Her GI upped her dose of Cimzia to counteract that, and it worked for a while. But her Cimzia antibodies haven't caused Remicade to not work. Before newer biologics like Entyvio and Stelara were approved, it was common to use drugs with the same mechanism. Your chances of responding to a second anti-TNF are somewhat lower than the first, but plenty of people respond well to the second anti-TNF too. My older daughter did very well on 4 anti-TNFs before moving to a biologic with a different mechanism.

 

[Pangolin]

In general, the insurance requirement is that you must have tried and failed Humira or Remicade (or biosimilar) before trying Stelara. Usually they do not require patients to try both Humira and Remicade before moving to Stelara if their doctor is prescribing Stelara. Usually there is also no requirement to prove exactly why it failed.

So, evidence of a trial and failure of Remicade is usually enough to get around a requirement to try Humira first. If the insurance requirement is specifically that patients must try Humira first, you are likely to be able to get around this by showing the prior Remicade use since they are both anti-TNF.

 

[DougUte]

It's November now. The insurance required I try Renflexis. I've done that and it is not working. My G.I. sent in another prior authorization and on Nov 3rd it was again denied. I've been on Humira and Entyvio. Both worked for a few years and now have failed. Insurance refused to approve Stelara in August. We appealed all the way and lost. Insurance said if I tried Renflexis and it fails me. They would approve Stelara. I did that and I have abdominal pain and still averaging 10 diarrhea bm's a day. I don't know they expect!!!! I need bowel control. Still using depends.

 

[trebor-HI]

At that time my Dr told me he would not prescribe Remicade because it is also a TNF blocker and the antibodies would work against Remicade as well.

Hi DougUte,
Perchance is your provide U of U? Interesting that they asserted Remicade was not an option in 2018 then relented when the insurance company insisted that it be tried.
It seems Stelara is pricing itself out of the market. My insurance company just removed it from its 2023 formulary. I wil have to go down this appeals path as well.

 

[DougUte]

Hi DougUte,
Perchance is your provide U of U? Interesting that they asserted Remicade was not an option in 2018 then relented when the insurance company insisted that it be tried.
It seems Stelara is pricing itself out of the market. My insurance company just removed it from its 2023 formulary. I wil have to go down this appeals path as well.

My provider is Utah Digestive Health Institute at Tanner Clinic in Layton. I'm a Utah alum though. I agree Stelara is pricing itself out of the market. Sorry your going to have to fight through appeals as well. I'm still on Renflexis at this time but it's not doing the job.

 

[DougUte]

Latest update. The G.I. put me on another round of Prednisone, a 8 week course. I also have diabetes. The Prednisone causes very high blood sugars, so my primary care doctor prescribed insulin. The goal is to get the fasting blood sugar to 140, and I got a 121 yesterday. I'm taking 40 units a day, which is a lot.

The insurance company has been denying my Stelara prescription since August. We've been through the appeal process twice. They made me try Renflexis, which failed. I have antibodies to it. With that news, they have finally approved Stelara.

I'm hopeful Stelara will work soon.

 

[DougUte]

This morning I woke up with abdominal pain in the lower right quadrant. It was bad enough to visit the E.R.. I've been put on an iv with toradol and other meds. They are doing blood draws and an abdominal CT scan. It's definitely medical day today.

 

[DougUte]

Well my ER visit ended with an admission to the Hospital. CT scan found a partial blockage at my old surgery site. They aren't sure if the blockage is due to scar tissue or current inflammation in the gut. Evidence of inflammation was also noted. I was on complete bowel rest for over 24 hours. I eventually passed a small amount of stool and, instead of having surgery, they sent me home.

I saw my G.I. doctor yesterday. He told me if the blockage is scar tissue I will need surgery. But I am going on Stelara first and after it has had time to work another scan will be done. If the blockage has not disappeared i will have another surgery.

Stelara, hopefully, will start next week.

 

[Scipio]

Good luck to you and to Stelara.

 

[Lisa]

Good luck - hope it takes care of things for you and you can avoid surgery!

 

[kiltubrid]

Latest update. The G.I. put me on another round of Prednisone, a 8 week course. I also have diabetes. The Prednisone causes very high blood sugars, so my primary care doctor prescribed insulin. The goal is to get the fasting blood sugar to 140, and I got a 121 yesterday. I'm taking 40 units a day, which is a lot.

The insurance company has been denying my Stelara prescription since August. We've been through the appeal process twice. They made me try Renflexis, which failed. I have antibodies to it. With that news, they have finally approved Stelara.

I'm hopeful Stelara will work soon.

It's SO FRUSTRATING when insurance dictates your care instead of a doctor.

 

[DougUte]

Today I have got things approved, including logistics. My loading dose infusion is finally scheduled for January 5th, 2023.