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Zeposia as first-line treatment?

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Ulcerative Colitis
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Posted 7/20/2022 10:45 AM (GMT -8)
My 18-year-old son was recently diagnosed with moderate UC. He's been taking mesalamine (pills) and prednisone for about a month and he is feeling much better, but his doctor now wants him to taper off the prednisone and start taking Zeposia. Our insurance won't cover it, but it appears that the drug company will give it to him for free for the first two years. I have to say, I'm a bit shocked that the doctor immediately went to Zeposia instead of trying one of the biologics first. I've read good things about Zeposia for UC, but it's very new. I'm thinking it might make more sense to go with something that has been around for a while and has a more proven track record. The list of possible side effects from Zeposia is daunting to say the least. I realize that every drug has a ton of potential side effects, but the Zeposia ones seem particularly scary.

Do any of you have any experience with Zeposia or any thoughts on the matter?

Thanks!
Posted 7/20/2022 11:20 AM (GMT -8)
I do not know the answer to the reasoning but your son's doctor should be able to explain why they want to go this course of treatment first.

One guess is that they think it might be an easier compliance issue for someone his age, they do not have to go get infusions or injections - they just take a pill once or twice a day. I'd rather have an infusion once a month or every other month. I have a car and can make my own schedule -- easy for me.
Posted 7/20/2022 11:32 AM (GMT -8)

ks1905 said...
I do not know the answer to the reasoning but your son's doctor should be able to explain why they want to go this course of treatment first.

One guess is that they think it might be an easier compliance issue for someone his age, they do not have to go get infusions or injections - they just take a pill once or twice a day. I'd rather have an infusion once a month or every other month. I have a car and can make my own schedule -- easy for me.

I definitely think logistics was a factor in the doctor recommending the Zeposia. Since my son is going off to college in the fall, it's easier for him to take a pill than figure out how/when to get an injection/infusion. That being said, those things can be worked out. I don't think they should be the main reason to recommend one drug over another.
Posted 7/20/2022 12:40 PM (GMT -8)
I would definitely at least discuss alternatives with the doctor and ask why this was his first choice. If it's about taking tablets, there are the JAK inhibitors (rinvoq, xeljanz) which have more data. Also, what's supposed to happen after 2 years? Do you have the option to get a 2nd opinion with another doctor? I would want to be confident that this decision is in the best interests of your son.
But i also question whether tablets are easier for a teenager than infusions/injections- at least you only have to remember episodically to do them, rather than every day. I once read a study on UC drug compliance and apparently single men are the most likely not to take their meds.
I was once accused by the doctor of not taking my pills when i had a very stubborn flare! (She's not my dr any more)
Posted 7/20/2022 3:40 PM (GMT -8)
Ditto to what has been said above, but I have a question. Is there a reason why the doc isn't going to see if mesalamine alone will work before switching to a different drug? Many people only ever need mesalamine to control their UC. Based on what you said above your son is on pred and mesalamine and it's only been a month. He definitely needs to taper off the pred, but just curious what the rush is to change meds without seeing if he will be ok on the mesalamine.
Posted 7/20/2022 5:18 PM (GMT -8)
We did some earlier threads about Zeposia here on the forum in case you'd be interested to search archived posts. It's a relatively new drug with some scary potential side effects-- so you have good reason to question your son's doctor RE his recommendation for it at this early stage in his UC treatment. Depending on the extent of his inflammation, he may be able to achieve remission on 1 of the oral mesalamine meds, or on mesalamine in combination with a long-used oral immuno-suppressive like azathioprine or 6-MP. The next med stage after that combo has been infusion meds, which seem to work well for many young adult UCers. It can take a while to arrive at the most helpful medication that also carries the least concerning side effects so you should do some reading on your own about the available Rx meds commonly used in treatment now. If the doctor hasn't recommended any information sources to you, try the Website of (U.S.) Crohn's and Colitis Foundation to start. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/21/2022 2:30 PM (GMT -8)
My boyfriend's doctor put him on Xeljanz before trying anything else (other than prednisone and mesalamine). Part of that was because my boyfriend did not want the hassle of infusions. I'd go with Xeljanz over Zeposia myself if he wants a pill (which is so much more convenient than infusions!), but that's just me and I'm partial to it since it's worked for me for a year now (knock on wood). My GI said Zeposia's safety profile was similar to Xeljanz's.
Posted 7/21/2022 3:29 PM (GMT -8)
Zeposia is fast working and effective for first time biologic users. Rinvoq and Xeljanz are also fast acting and probably used more often currently then Zeposia. I guess the question is the experience your doctor has with various drugs.
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