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Stelara to Remicade

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Ulcerative Colitis
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/3/2022 7:21 PM (GMT -8)
Had a video chat with my GI today. Decided that Stelara really wasn’t working. Never tried Remi before. He thought maybe we should give it a try. Guess there are side effects from all the biologics. Today I’m reading one post about Lupus. They all frighten me a bit. He was talking about Xeljanz , thought maybe go with the Remicade first. Least I have another one to fall back on in case it doesn’t work.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19337
Posted 2/4/2022 7:24 AM (GMT -8)
Faithmac, I loved Remicade, I have crohns. It can be tailored to your needs, I ended on 10kg, every 4 weeks. I did the 3 loading doses & could tell some difference, by the 6 month mark I was much better. At 5kg in time they can move the infusions closer together. After reading in this forum it seems to work faster for UC folks, however, it depends on the severity of the disease too. I think IPoop on here has been on it quite a few years successfully, 8-9 years.

The last 9 months I was on it it did get drug induced lupus. Because Remicade worked so well for me, I asked my gi to talk to my rheumatologist about me letting me take Plaquenil & continuing with Remicade. I did that for 9 months & had to stop because the Plaquenil started messing with my vision. It's a fairly rare potential, but I would not let it stop me from trying Remicade.

Someone on here was hesitant of Xeljanz because they had a stent, was that you? If so, I would worry more about that, than drug induced Lupus. Once Remicade is stopped it usually takes 6 months for it to completely leave your system.

Take care.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2518
Posted 2/4/2022 9:28 AM (GMT -8)
With Remicade there are a lot of dosing adjustments that can be made if needed. I love it. When we switched to every 4 weeks, I asked my doc if I would have to wait to switch to Xeljanz if 10mg/4wks didn't get rid of my remaining mild symptoms and he said no. Since they are 2 very different drugs I wouldn't have to wait to try Xeljanz. Fortunately, 10 mg/4wks has put me in remission -- confirmed by colonoscopy in December. I've been on it a few years now and did so much better before the end of the loading doses, but it took a long time with several adjustments until I got to complete remission
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 2/4/2022 11:44 AM (GMT -8)
It only worked for me for 9 weeks. Have you already been on Humira or no?
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/4/2022 12:45 PM (GMT -8)
Had no stent! Really did well on all the biologics except for Stelara. Loading dose was good. After that was downhill. I was on Humira for 3 years. Simponi for about 2 years, Entyvio 3 years and Stelera 6 months.
Remicade sounds good. I like that you can adjust when needed. Had my chest X-ray today. I’m one of the lucky ones that test positive for TB. On meds for a year . Still test positive.
Sounds like most have positive things to say about it. Nurse said probably can start in 2 weeks. Just waiting for insurance.
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/11/2022 5:26 AM (GMT -8)
Just received my test results. Calprotectin was a little over 3,000. Still waiting for insurance approval for Remicade. Stelara definitely not working. Had injection 2 1/2 weeks ago. One good thing I don’t have c diff. Really suffering at this point. I guess it’s partly my fault. Refused Prednisone. I really can’t deal with taking it. Trying to hold out . Nothing is really working . Infusion center called with an appointment for Wednesday without prior approval. Hopefully they won’t have to cancel.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1826
Posted 2/11/2022 6:16 AM (GMT -8)
Oh that prior approval is essential. Remicade is like 10 to 15k an infusion.
Take the Prednisone til you get approved. I didn't and ended up with a medical bill so high I had to cash in most of my retirement. It was awful. They would not make approval or the financial assistance retroactive.

The Remicade though... It's worked for me since 2015.
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/11/2022 6:37 AM (GMT -8)
Thanks Clo!
Still trying to figure who is the prior approval from?
Which part of my insurance ?
Have Medicare and a PPO and Silver script stand alone script for meds
I should have no problem. Just don’t want them to cancel Wednesdays appt
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19337
Posted 2/11/2022 7:02 AM (GMT -8)
Have you checked with your gi's office about the approval for Remicade? Your Medicare A&B will pay for your infusion & the supplemental will pay the 20% Medicare doesn't pay. I don't blame you for holding off on pred considering how bad you do on it, don't beat yourself up.

Keep us posted.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 2/11/2022 7:36 AM (GMT -8)
How long are you willing to suffer? Remicade can take over a month to work. Hope it works for you.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1799
Posted 2/11/2022 8:50 AM (GMT -8)
I'm also quite anti prednisone because of the state of my bones, and have tolerated a level of symptoms while waiting for drugs to work, rather than go back on prednisone. Really you know your body best in terms of what symptoms are manageable, and if/when you could do with some extra help.
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/11/2022 9:49 AM (GMT -8)
Didn’t need approval! Seems Medicare part B said I didn’t need approval for needed medical. I’ll go on entocort if need be. Didn’t seem to bother me as much. Doesn’t seem to be any other options.
Mentally I don’t do well on pred. I have anxiety issues to begin with. Thought I was going to bite someone’s head off. Daytime I seem to be better. Mornings are the worst. Nighttime isn’t the greatest.
Dicyclomine helps a lot.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1631
Posted 2/11/2022 11:54 AM (GMT -8)
Beat me to it! I was just coming around to say Medicare doesn’t require pre approval! 😀
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/11/2022 12:02 PM (GMT -8)
Guess getting older has its benefits!
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1826
Posted 2/11/2022 3:00 PM (GMT -8)
My secondary would waive the pre-approval if I had been using Medicare.

Friends 20 percent after Medicare was 1563.00 after Medicare payment. She's a little chunky though. The smaller lady in our support group paid 869.00 after Medicare. So still pricey.

Make sure Remicade is on your approved medicine list.

Understand about the Prednisone....

Hope you feel better soon.

Post Edited (clo2014) : 2/11/2022 4:04:07 PM (GMT-7)

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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/12/2022 4:03 AM (GMT -8)
My secondary will pick up what Medicare doesn’t. Lucky to have really good insurance thanks to my husband. A really good prescription stand alone plan too. With every biologic I’ve taken there’s always been a $25 copayment.

Not sure what you mean Clo about understanding prednisone? I just know I dread going on it. It’s never a short time that I’ve been on it. So many side effects! Then the weening off is awful. It’s always been a bandaid for me.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1826
Posted 2/12/2022 5:36 AM (GMT -8)
I meant that I understand the not wanting to go on it and the struggle to come off it.

Glad you have good insurance. I am just paranoid since we had that hic cup.
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1583
Posted 2/12/2022 6:07 AM (GMT -8)
Oh ok!
It’s interesting my GI never pushes or suggests pred. He’d rather me be on not that type of drug . Wants to see if what I’m taking is working and not the pred.
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