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Has anyone gone back to remicade after xeljanz?

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Ulcerative Colitis
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Posted 5/11/2022 11:52 AM (GMT 0)
Hi,
My daughter came off remicade maybe three years ago.
It was thought she had drug induced lupus. There were no antibodies to remicade though she had a positive Ana and that still comes and goes. On lupus medicines,too.
She went on entyvio after she began to flare after a while, but it wasn’t working well.
She has been on 20mg of xeljanz for nine ninths and it has never totally put her in remission and the flare is worsening along with pains and blood issues with low ferritin right now,
though it doesn’t correspond with her symptoms according to colonoscopy and cal protection.
She would like to try remicade again, the dr wants to wait awhile and has given pred suppositories, her inflammation is low down. It’s not working yet, it’s a week now.
She also did a pred taper from the Rheumatologist’s for ︃body pains. This didn’t help the flare.

Thanks for any answers.
Posted 5/11/2022 1:34 PM (GMT 0)
Jayce,

How much experience does her GI have with treating complex IBD cases? I go to a GI who specifically specializes in IBD cases.

There are some more treatments that just came on to the market and maybe they would be better for your daughter than the anti-tnf meds since she had some issues with them previously.
Posted 5/11/2022 2:18 PM (GMT 0)
Keith, she’s had been with a well regarded IBD DR in a NYC hospital from the beginning.
She switched to a new hospital and dr recently because she wasn’t getting anywhere, maybe because of Covid stress and telemedicine.
She left that practice on xeljanz.
New doctor suggested a date when
they would do a colonoscopy and give the xeljanz more time.
She reached that benchmark, and is now flaring more,
New dr doctor wants her to stay on it a little longer and use the topical prednisone since her inflammation is at the rectum.
He is definitely informed as he has IBD too snd is in an IBD practice.
He said there are newer jak inhibitors to go to next.
I think that are the lines you’re thinking along.
She would like to be settled on some thing that has been studied for pregnancy, and the jaks don’t have enough data yet.
He would obviously like to use a knew drug to get her out of this flare and keep her on a good road, and doesn’t want to risk anaphylaxis with Remicade, and he says the best thing is to be in remission before being pregnant.
We understand that.
She doesn’t want to be on a jak if she wants to get pregnant.
Of course she doesn’t want to risk anaphylaxis, but she had been on it two different times, and never developed antibodies to it.
I’m summarizing.
Sorry it’s a long Answer
Posted 5/11/2022 4:59 PM (GMT 0)
Jayce, are you saying she experienced anaphylaxis from Remicade? Perhaps in another week she may be able to tell if the suppositories are going to be effective or not. I remember some of her history, after all of the testing did the drs ever come up with a diagnosis?

I don't recall seeing anyone lately posting about switching from Xeljanz to Remicade. I hope she can get some relief.
Posted 5/11/2022 10:37 PM (GMT 0)
I go to Mount Sinai in NYC.

What about 6-mp/imuran? They are well studied for pregnancy, in fact, my GI did a study on pregnant women with IBDs and on 6-mp/imuran. He said they are very safe for the mother and fetus.
Posted 5/18/2022 1:19 PM (GMT 0)
Hi Keith, she didn’t do well on 6mp it was the first drug along with a mesalamine that she used for a while and didn’t gain remission, along with added topicals at that time. It went like that for a while because she was away in school and didn’t know what was supposed to be her new normal. She never did use imuran, But ended up flaring badly, and was put on remicade and that worked almost immediately for a couple of years. At that time she had left sided colitis.
We. can ask about these meds and see if they might work now that there’s less inflammation.
Straydog, she never had anaphylaxis from remicade, the dr is concerned that she could experience it going back on it.
The drs best diagnosis is drug induced lupus, she does test positive for sle sometimes, and her symptoms coincide. The drug induced evidence seems to be gone.. she remains on lupus meds, and has symptoms that include burning skin on her torso she describes as a bad sunburn and joint pain. These come and go as her colitis flares. They took her off remicade but the new symptoms continue to come and go 3 years later. . After 2 years she went on entyvio but didn’t feel well on it and it hadn’t started to work, maybe she should have given it more time, but she didn’t think it was helping. Now the xeljanz isn’t working at 10mg 2x daily.
Remicade was the medicine that she felt good on but the dr is concerned to restart it.
She may go to rinvoq.
I have been asked why she doesn’t post herself, but even after all of these years she doesn’t want to, but is ok with me writing. Of course I discuss what I write, and appreciate all that I have learned here.
Jayce
Posted 5/18/2022 2:07 PM (GMT 0)
Jayce,

I didn't do well on 6-mp either so my GI switched me to Remicade and it worked very well for me for four years. He said that Imuran/aza breaks down/converts differently in the body so some people can tolerate when they can't tolerate 6-MP and vice versa.
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