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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara vs Entyvio? Patient Assistance?


11-22-2016, 10:03 PM   #1
Mark in Seattle
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Stelara vs Entyvio? Patient Assistance?

Hello,

I have tried Humira. Seems like next is Stelara or Entyvio.

Humira has had a good financial aid (patient assistance program) which has helped me alot since my insurance has an enormous deductible and copays.

So my first question in considering Stelara/Entyvio is which one has a good patient assistance program. And is the assistance program available to all or do you have to qualify by having limited income? (Humira has no income limitations).

If anyone has experience/advice, I would appreciate hearing.

My very limited understanding is that aside from possible cost considerations, it's kind of a coin-toss as to which one to try. But my knowledge on these 2 meds is limited, so if anyone feels strongly in favor of trying one before the other, I'd be grateful to hear why.

Thanks!
11-22-2016, 10:19 PM   #2
Clash
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My son is in Stelara. The patient assistance program, care path, is very similar to REMISTART and Humira Complete. It is not financially based and it picks up the majority of the out of pocket cost.

My son started stelara before the FDA approval. Care path (stelara assistance program) charged 5 dollars per injection. On day 0 3 injections and day 30 1 injection then 1 injection every 8 weeks (each injection is 90 mg).

After FDA approval for CD the induction phase is done by IV instead of injection, I think.

We chose stelara because my son also has spondyloarthropathy related to IBD and entyvio is gut specific so not helpful with SpA whereas, stelara has seen favorable results in studies so far for SpA.

So, we pay 5 dollars every 8 weeks for his stelara dose.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-22-2016, 11:39 PM   #3
Mark in Seattle
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Thanks Clash, I appreciate that info. Hope it's helping.
11-23-2016, 12:41 AM   #4
Ranchmom
 
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I started Stelara last January when Humira stopped working. I'm in Canada but 100% of the cost is covered by BioScript (I believe that's what they are called). It is the same type of program that Humira has. I did not have to qualify financially, my GI just had to prove I had already tried Humira & Remicade. Once that was done it just started showing up once a month at Purolator. They've been the easiest program to deal with so far.

I can't compare it to Entyvio as I have not tried that one but I hope whichever you decide works for you!
11-26-2016, 05:08 AM   #5
EastCoast902
 
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Entyvio has programs to help- Entyvio Connect I believe it is called. I am in Canada and my infusions are covered. I have been on it since August and due for infusion #5 in 10 days. I've been in and out of hospital a few times since, they say it's obstructions, but I think it is partial blockages due to me eating now known trigger foods.
11-26-2016, 10:09 AM   #6
my little penguin
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From what I read entivyio can take up to a year to work
Most need a bridge therapy for the first 6 months or more

Stelera seems to work quicker but
Mechanisms in terms of what is targeted are different so
Hard to say which mechanism a particular patient needs to stop inflammatory response

I know for ds if humira stops working
Sterlera or simponi will be next steps
At least now until something better comes along
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11-26-2016, 10:36 AM   #7
EastCoast902
 
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Entyvio does take longer to work, but my support group averages 6 months, some sooner, some longer. After 3 months I am seeing semi solid BM's a few times a week.
11-26-2016, 05:09 PM   #8
Maya142
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Stelara also takes quite a while to work - we were told 6 months.

We have also been told Entyvio takes a while to work but I read in one study that it takes 14 weeks or so online, which doesn't seem that long to me.
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Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-16-2016, 11:57 AM   #9
Mark in Seattle
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Thanks for all the replies! One follow-up question. I ask this because i have a very high deductible insurance plan. Regarding the first stelara infusion, would the cost of the stelara likely get paid by the stelara plan just like the injections, or would Jansen bill the full cost of the nedicine to the hospital since they must fo the infusion, in which case the patient assistance program would not apply? I'm trying to confirm whether the patient assistance program would cover the cost of the medicine for the initial infusion which would take place in the hospital setting. Seems like anything that happens at the hospital gets billed to me in full by the hospital. Not sure if this would be different. I hope I've stated my question clearly enough. Thanks.
12-17-2016, 12:55 PM   #10
aypues
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I would strongly consider Remicade in addition to the newer ones. I started biologics on Humira and it never worked for me. Remicade (plus cellcept) worked immediately. I would ask if you can have the infusions (of any medication) at non-hospital infusion center as the cost is much lower. The drug cost will be the same, and you can use Remistart for that and they will pay for up to 20k in copays.
12-17-2016, 01:39 PM   #11
Mark in Seattle
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Thanks aypues,

My dr. told me that my tnf receptors are currently "saturated with Humira" and therefore no other anti-tnf drugs (remicade, etc.) will fare any better for me. Apparently he can tell this from some kind of blood test. (He could also somehow tell that I do not have antibodies against Humira). What was your experience when switching from Humira to Remicade? Did you doc do any kind of blood test? How long ago was that? I wonder if the blood test is something new.

And what about cellcept? I have not heard of it. Is it for suppression of Crohn's or is it more to prevent antibody formation to Remi?
12-18-2016, 03:19 PM   #12
aypues
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Thanks aypues,

My dr. told me that my tnf receptors are currently "saturated with Humira" and therefore no other anti-tnf drugs (remicade, etc.) will fare any better for me. Apparently he can tell this from some kind of blood test. (He could also somehow tell that I do not have antibodies against Humira). What was your experience when switching from Humira to Remicade? Did you doc do any kind of blood test? How long ago was that? I wonder if the blood test is something new.

And what about cellcept? I have not heard of it. Is it for suppression of Crohn's or is it more to prevent antibody formation to Remi?
That's not true at all. I can tell you with 100% certainty. Not all the TNF drugs work for everyone and just because you fail one doesn't mean another won't be effective. It's also a dose related issue for TNF blockers and it's much easier for doctors to dose escalate on Remicade. I would seek out an IBD specialist - GI generalists aren't good enough for many people with an aggressive disease like Crohn's. Cellcept works like 6mp and AZA to prevent antibodies to make the Remicade more effective/work longer.

The test he is referring to is the Prometheus Anser ADA or IFX test. Just because you don't have antibodies means it is working for you. I didn't have any antibodies to Humira either, but my level was low and it wasn't working at all - I was getting worse on it. Insurance wouldn't pay to double the dose so we switched and SO GLAD we did. Remicade is like night and day for my disease. It was also studied among the 3 major TNF blockers and it is the most effective. https://www.ncbi.nlm.nih.gov/m/pubmed/27058635/
12-18-2016, 04:07 PM   #13
my little penguin
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Ds was on remicade and then switched to humira 5 years ago no idsyes
He also had no antibodies to remicade but had high levels of remicade trough levels
That doesn't mean another anti tnf won't work if it was working for you in the past
Can you get a second opinion ??
12-18-2016, 04:29 PM   #14
Maya142
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Some GI's are now thinking that if you fail the first anti-TNF completely (that is, you have therapeutic levels AND you have no response at all), you are a "non responder." Then switching to a biologic with a different mechanism would help.

Other GI's will try a second anti-TNF anyway, but I think it is becoming more common to try a different mechanism if the first one does not help at all (especially since biologics with different mechanisms are available now).
12-18-2016, 08:06 PM   #15
Mark in Seattle
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Thanks for the feedback all.

Personally I never felt that Humira did anything for me. And even at weekly dosing, still nothing. So when my gi advised skipping the other anti-tnf's, I figured that's probably right. Now, had I felt that Humira had been effective for a while, then I would probably have been more interested in pursuing Remi or cimzia, etc. But now that you mention your scenario of failing Humira and succeeding with Remi, it makes me wonder.

My gi is the head of gastroenterology, and as I understand it, has some acclaim and standing in the gastroenterology world. He has an IBD team under him. So I really did not question his wisdom in this matter, at least til now, given your comments/feedback. I suppose a second opinion could posdibly yield a different recommendation for next med choice.

I am going to give this some thought.

My Humira level was measued as 9.8mcg/ml. Does that suggest anything to you all in terms of whether another anti-tnf should be tried next vs a stellara or entyvio? I'm pretty sure the 9.8 figure is why he felt I should skip the other anti-tnf's.

Can you possibly explain what I would expect if I tried Remi, in terms of needing to wait to wash out Humira first, how long does an infusion take, how often do infusions need to occur, and how long would you think it would take til I could have an idea whether it seemed helpful?

Thanks!
12-18-2016, 08:08 PM   #16
Mark in Seattle
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Ds was on remicade and then switched to humira 5 years ago no idsyes
He also had no antibodies to remicade but had high levels of remicade trough levels
That doesn't mean another anti tnf won't work if it was working for you in the past
Can you get a second opinion ??
My little penguin, you mention Ds was on remicade. How long on remicade and did Remi work for a while ir not at all?

Thanks!
12-18-2016, 10:47 PM   #17
RNGirl
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Hi Mark, I live in Spokane and have been less than impressed with the GI doc's over here. I am considering going to the Swedish GI clinic in Issaquah. My insurance covers Swedish/Providence and Issaquah would be the closest on and off the freeway. I have been doing a little research and think I am seeing good reviews of a Dr. Harper?? Do you have any suggestions advice for doc's in the Seattle area? Getting frustrated over here. Thanks much!
12-18-2016, 11:24 PM   #18
Mark in Seattle
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Hi RNGirl,

I grew up in Spokane (coincidence). Glad to chat with you. You are correct that Swedish does have a presence in Issaquah. I know some of their gi's, as they used to be with Virginia Mason Medical Center before several of them departed for Swedish a few years ago. However, I am not sure that any of those gi's come out to Issaquah. Those that I know were all practicing in Seattle only. I know nothing of Dr. Harper.

I will pm you; I am happy to discuss my opinions on docs, but prefer not do discuss specific doc's on the internet.
12-18-2016, 11:44 PM   #19
my little penguin
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Remicade
Ds was on it 8 months
It kinda worked
His body was fighting it
Skin rashes
Blisters
And later two allergic reactions
We kept increasing dosing and frequency
No antibodies
But he did respond some
His scopes looked better and lab work improved

Humira took 5-7 months to start working
They put him on the kiddie dose first for theee months then switched to adult dose
He has been on humira for almost 5 years
12-19-2016, 12:51 PM   #20
aypues
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Thanks for the feedback all.

Personally I never felt that Humira did anything for me. And even at weekly dosing, still nothing. So when my gi advised skipping the other anti-tnf's, I figured that's probably right. Now, had I felt that Humira had been effective for a while, then I would probably have been more interested in pursuing Remi or cimzia, etc. But now that you mention your scenario of failing Humira and succeeding with Remi, it makes me wonder.

My gi is the head of gastroenterology, and as I understand it, has some acclaim and standing in the gastroenterology world. He has an IBD team under him. So I really did not question his wisdom in this matter, at least til now, given your comments/feedback. I suppose a second opinion could posdibly yield a different recommendation for next med choice.

I am going to give this some thought.

My Humira level was measued as 9.8mcg/ml. Does that suggest anything to you all in terms of whether another anti-tnf should be tried next vs a stellara or entyvio? I'm pretty sure the 9.8 figure is why he felt I should skip the other anti-tnf's.

Can you possibly explain what I would expect if I tried Remi, in terms of needing to wait to wash out Humira first, how long does an infusion take, how often do infusions need to occur, and how long would you think it would take til I could have an idea whether it seemed helpful?

Thanks!

They aren't sure what level will be effective yet for Humira (and Cimzia). It may be higher than 12 for some people. My doctor told me many people respond to Remicade right away. She was right for me. It worked immediately and turned off the pain like a light! I was in disbelief. I actually didn't tell anyone for like a month because I thought it was a fluke or something. I was able to get off the Prednisone with no problems either. The infusions do take awhile though. I kind of like it though. It forces me to relax and read or watch Netflix. It's about 3.5 hours start to finish for me. They sign me in, premedicate me (tylenol, zyrtex, solumedrol), start the IV, then slowly start the medication. If you don't have a reaction to it they increase the speed until it's finished. You do three loading doses at week 0, 2 and 6. After that it's every 8 weeks. I had a lot of joint pain 2 weeks before my 4th infusion (1st regular 8 week interval), so doc ordered the AnserIFX test and my level was low at 3.4 with no antibodies. We increased the dose to 10mg/kg and the frequency to every 6 weeks. I started the Cellcept a couple weeks prior to Remicade so we didn't make too many changes at once if there was a problem we could identify it. I'm still having some joint pains but the Crohn's is in remission as far as I can tell. I also did 4 Injectafer iron infusions since my iron and ferritin were so pathetic. All my labs are normal now.

I didn't have to wait to "wash out" the Humira - that could take months until it's totally out. We started Remicade as soon as we got the insurance pre-approval and it was fine.
04-25-2017, 04:39 PM   #21
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They aren't sure what level will be effective yet for Humira (and Cimzia). It may be higher than 12 for some people. My doctor told me many people respond to Remicade right away. She was right for me. It worked immediately and turned off the pain like a light! I was in disbelief. I actually didn't tell anyone for like a month because I thought it was a fluke or something. I was able to get off the Prednisone with no problems either. The infusions do take awhile though. I kind of like it though. It forces me to relax and read or watch Netflix. It's about 3.5 hours start to finish for me. They sign me in, premedicate me (tylenol, zyrtex, solumedrol), start the IV, then slowly start the medication. If you don't have a reaction to it they increase the speed until it's finished. You do three loading doses at week 0, 2 and 6. After that it's every 8 weeks. I had a lot of joint pain 2 weeks before my 4th infusion (1st regular 8 week interval), so doc ordered the AnserIFX test and my level was low at 3.4 with no antibodies. We increased the dose to 10mg/kg and the frequency to every 6 weeks. I started the Cellcept a couple weeks prior to Remicade so we didn't make too many changes at once if there was a problem we could identify it. I'm still having some joint pains but the Crohn's is in remission as far as I can tell. I also did 4 Injectafer iron infusions since my iron and ferritin were so pathetic. All my labs are normal now.

I didn't have to wait to "wash out" the Humira - that could take months until it's totally out. We started Remicade as soon as we got the insurance pre-approval and it was fine.
So I started Humira about 2-3 years ago for Crohns. It took a little while but it worked great and I could eat whatever. Then I started getting plaque psorasis itching rash dandruff very bad..we tried stopping and restarting the Humira after a few weeks and same reaction. So stopped Humira and put on Remicade. Remicade infusion takes 2-3 hours from getting setup at the hospital to finish. I developed a blood pressure spike issue with it and my crohns is not better so we are going to choose Stelara or Entyvio next in June when this past infusion has left my body mostly. I am told Stelara is a syringe and you are expected to insert it yourself..not into a vein, just your thigh or stomach....Humira was a pen and easier? ...Entyvio is a short infusion
04-25-2017, 04:44 PM   #22
ronroush7
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Humira is either a pen or a syringe. You can choose.
04-25-2017, 04:51 PM   #23
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didnt know.... was given pen
04-25-2017, 05:01 PM   #24
Mark in Seattle
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Stelara begins with an infusion, and after that you do injections. My gi tells me that stelara usually results in reduced inflammation for the patient than sooner than entyvio. My gi says entyvio takes about 6 months. Didn't say how long for stelara.

My insurance was a horrible evil entity to deal with to get the infusion approved. All they actually needed, but did not offer to say, is that my "crohn's is moderate to severe and (I) have failed one anti-tnf med. it's basically what you find almost verbatim on the fda indication memo. And insurance wanted the disage if 399mg specified, rather than citing in terms og mg/kg of patient's weight. Too bad my doc didn't know about this word game. It would have saved me 30 phone calls to harrass the insurance co. And would have gotten my infusion a couple months sooner. I'm not yet seeing impressive results from stelara. Still on a fair amount of pred. Good luck jazzygirl and anyone else.
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