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Is Remicade being used anymore?

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Ulcerative Colitis
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jayce
Regular Member
Joined : Nov 2007
Posts : 445
Posted 6/11/2020 4:54 PM (GMT -8)
I was recently told that Remicade has been discontinued for IBD because insurance companies haven’t been covering for sometime.
I was told that similar medications were being used but patients were not always aware.
Does anyone know if this is true?
If so, how long has this been in practice?

Thank you
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19348
Posted 6/11/2020 5:51 PM (GMT -8)
Hi Jayce, yes Remicade is still being used by gi's. There is a drug called Inflectra that is a biosimilar to Remicade that is being used. They use the same protocol with it as they do Remicade. I've seen some patients that were on it & did fine, including ones that insurance required them to switch. It seems that it is cheaper than Remicade. It all depends on the insurance company.

I can't answer your question about someone being given it thinking they were getting Remicade. That would be unethical.

You can go to their website & read about it.

Hope this helps.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5854
Posted 6/11/2020 9:21 PM (GMT -8)
Hi, Jayce! How is your daughter? / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1802
Posted 6/11/2020 11:45 PM (GMT -8)
When I was getting my entyvio infusion (1.5 years ago) the girl next to me was getting remicade. She told me the hospital had switched her to remsima (a biosimilar) because it was cheaper but she got terrible pains in her knees and other joints. So they switched her back to remicade and the pains went away. Meanwhile she was enjoying an 8 year remission with remicade.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2530
Posted 6/12/2020 11:05 AM (GMT -8)
I am still getting Remicade (started last year). Hope my insurance continues to cover it because it took me too long to get where I am now and I don't want to rock the boat!
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countess18
Regular Member
Joined : May 2016
Posts : 461
Posted 6/12/2020 3:24 PM (GMT -8)
Ditto what CC said
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Moose287
New Member
Joined : Jun 2020
Posts : 2
Posted 6/13/2020 3:08 AM (GMT -8)
Hi, Remicade is just a brand name for the original maker's Infliximab. I have been on Remicade, Inflectra and Remsima. I don't personally notice the difference between them. I guess the hospital changes it up for what the best offer is. The dosage is the same as well.
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jayce
Regular Member
Joined : Nov 2007
Posts : 445
Posted 6/13/2020 9:08 AM (GMT -8)
Thank you for your answers. I wrote a long reply the other day and my finger hit an ad on the iPad screen before I submitted it, and it was gone.
I was curious the person that told was adamant that it wasn’t being used anymore for IBD regardless of insurance, and because of insurance, now that there are biosimilars.
I know Remicade is infliximab, but it was working well for years.
about 2 years ago my daughter began experiencing debilitating muscle wasting pain and weakness.
She is now under the care of a hematologist and a rheumatologist that we are happy with. She had platelets, eosinophils, and inflammation markers all over the place, as well as enlarged lymph nodes in her neck. She hadn’t had any flaring of UC though, maybe the lupus and neurological meds kept it in check.
She recently began what might be a flare, and it seems that her dr of 12 years is only doing telemedicine. So she is seeing a dr that has taken over her position and Things are moving very slowly. I know it has to, this is not the time to need a dr.
You are right Straydog, it would be unethical, My daughter is on her own and I don’t go to all of her appointments, I was thinking that maybe she had been switched and the dr may have mentioned it, but quite frankly the dr was pretty hands off since the setup has changed, my daughter really saw her for a minute before an infusion and probably wouldn’t note the switch if she was told it’s the same. She doesn’t remember.
If things don’t get under control I’d like her to have remicade as an option, if possible, so I need to find out if she had been given a different mix.
I didn’t see anything on the portal, only says infusion.

Hi Old Hat. It’s nice to see you. I hope you’re feeling well. It’s not an easy time to need a dr.
I’m curious do you know if the dr may be looking to take more time off? I can understand she certainly put in a lifetime. I don’t know then if it’s where I would want to stay. She was why we began there.
Thank you for the information you’ve all given, I’m glad to know some people can still get remicade, and also good to know that the biosimilars work.

Thank you
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19348
Posted 6/13/2020 10:44 AM (GMT -8)
Jayce, if at some point your daughter resumes Remicade, she can verify with the infusion nurse that she is receiving Remicade, plus the bag hangs in sight. I always saw my bag with the name on it.

Take care.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5854
Posted 6/13/2020 10:46 AM (GMT -8)
Jayce, I'm so sorry to read that your daughter has complications that require more specialist consults; I remember what a trooper she is from your previous posts. As to her longtime UC subspecialist's availability, my impression is that this doctor "burned the candle at both ends" for decades, working as an administrative director and med school faculty member besides treating more & more patients, conducting clinical trials, reviewing research publications, compiling & editing medical textbooks, attending specialized conferences. etc., etc. (During my own worklife my dept. head commented that "once you become the head of anything at a large institution, your life turns into a constant meeting"!) So I think our doctor, getting older, needs to slow down somewhat and has turned over most time-consuming administrative duties, but will continue to follow patients and teach 'til future retirement. The televisits came about due to COVID-19. Office staff phoned me in early April to re-schedule my 6-mo. check-up due in May, but they didn't think regular office visits could resume until July so, being in remission (TG!), I registered for a Sept. office visit thinking that's a safer alternative in my situation. Thanks for asking about my health; I've been pursuing complicated dental issues in recent yrs & now await re-opening of those offices! *** For your information RE physicians' availability, I'd say to check the IBD Center Website periodically for updates then phone them if you need additional clarification. *** Wishing you & your daughter my best; please keep in touch here on the forum as your time allows. / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1802
Posted 6/13/2020 1:24 PM (GMT -8)
Your daughter can always check what's on the label of the bottle/bag at the end of the infusion line. Plus if you listen to the nurses talking they will usually mention the drug and the dose (one hospital i went to, they always had to double check everything with a second nurse just before starting the infusion). Its good practise to check in any case, so you can be confident of getting the right treatment.
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jayce
Regular Member
Joined : Nov 2007
Posts : 445
Posted 6/14/2020 6:31 AM (GMT -8)
Olds hat thanks for letting me know. She was told that she may be able to schedule with her for the next visit. Right now she’s using enemas. It’s not worse but not better. I don’t think she ever stopped a flare without remicade. I hope she’s back by the next visit.
You are so right about burning the candle. I hope she can come up for air now.

I’m sorry about the dental work postponed. We want to get things done and feel better, without risking something else. Be well.
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newme22
Regular Member
Joined : Sep 2017
Posts : 58
Posted 7/5/2020 4:02 PM (GMT -8)
I'm the one who had my Remicade changed to a biosimilar and than back again. I'm still getting my Remicade 10mg/kg every 6 weeks with no problems at all. But it isn't working as good as it used to, before the switch to Renflexis and than back to Remicade again. Remicade worked great before that! So you never know if a drug that worked before will work like it did once it is changed or stopped.
So sad, Anyway I may be changing medications because my Fecal Cal Protectin results came back with a elevated reading of 530. It should be 50 or below. Dr. sent me a portal message and said to think about Stelara or Xeljanz and let him know if I want to change or wait and see if things improve on their own. So I'm on the fence for now. I'm still in the thinking and research part of the process. I getting a CT Scan on the 10th.
I mean I am doing better than I was 2.5 years ago, not sure if I want to risk changing meds now for a unknown that my not help me at all.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1802
Posted 7/6/2020 8:34 AM (GMT -8)
Are you allowed to bridge your meds if you swap so that there is an overlap? Both xeljanz and stelara work reasonably fast that if you had a remicade infusion and then a couple of weeks later start the new one, you might be able to switch back to remi if the new drug doesn't help. I did this with entyvio- had the entyvio infusion then 2 weeks later started xeljanz.
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newme22
Regular Member
Joined : Sep 2017
Posts : 58
Posted 7/6/2020 9:11 AM (GMT -8)
poopydoop....
Thanks for the suggestion smile I don't know if I'm allowed to bridge my meds but will ask my doctor when he messages me back! By the way how do you like the xeljanz?
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1802
Posted 7/6/2020 10:36 AM (GMT -8)
I am liking xeljanz- it's the only drug that put me in a full remission since I was diagnosed. Remicade got me about halfway there (on 10mg/kg) but I had a very persistent proctitis that it just wouldn't touch.
I like the convenience of taking tablets. With remicade and entyvio I used to get anxious the week before my infusion in case I got an infection.
For a lot of people they can feel xeljanz working within 3-7 days. In my case I wasn't sure and even had a consultation with a surgeon, but by the 5th/6th week it started to become more obvious as confirmed by calprotectin (went from 1600 to 500). I slowly improved until the 4th month where a scope confirmed remission (and calprotectin under 50).
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newme22
Regular Member
Joined : Sep 2017
Posts : 58
Posted 7/6/2020 11:33 AM (GMT -8)
Good timing...Thanks for the quick response and before my doctor messages me again.
Wow those are great results and with a Calprotectin of 50. Congratulations!

I will defiantly be considering xeljanz if a change of meds is needed to keep me in remission.
Remicade's not keeping me in remission like it should anymore.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1802
Posted 7/6/2020 1:17 PM (GMT -8)
No problem, I hope you find some relief soon
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