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Confused about Zeposia

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Posted 1/3/2023 1:35 AM (GMT 0)
Confused about Zeposia

Well, I am at crossroads. 9 yrs with UC. I am on max dose of mesalamine (balsaladise). Diets, supplements, mesalamine enemas don’t work. Hydrocortisone enemas work, but it’s not maintenance med, can’t stay on them forever.
My symptoms aren’t awful, if I could hold without hydrocortisone enemas I would leave things as is. However I don’t think I know what deep remission is. Except few weeks or months here and there, I am always on the edge.
In short, same old story. On one hand I am not that bad and scared to escalate the meds. On another hand I am tired of struggling and watching every little thing I put in my mouth.
All this to get to my point.

I saw my doc right before holidays and discussed my options. He suggested Zeposia. I immediately replied - why Zeposia? Why not Entivio, as I read it’s the safest.

Here is what he said
1. Zeposia is a step before biologics
2. Entyvio would be overkill for me (his words)
3. Zeposia in his opinion is safer than immunmidulators like 6mp, etc.
4. He has patients on Zeposia and seeing good results.
5. Не thinks I would be perfect candidate for Zeposia.

He is OK with what I decide and when I am ready. Meanwhile he ordered bloodwork, including test to see if immunomodulators would be suitable for me. And EKG, in case we go with Zeposia.

So I am confused. I know this med is new. And it’s a minus. But 20 some yrs Remicade was also new. And all higher tier meds come with side effects that are scary.

What are your thoughts?

Post Edited (Lka58) : 1/3/2023 11:05:45 AM (GMT-8)

Posted 1/3/2023 2:23 PM (GMT 0)
I would get a 2nd opinion, if that's an option. It's really not clear to me why some doctors are pushing zeposia over established treatments like entyvio or remicade. I don't see why entyvio is overkill, and yes it is probably one of the safer options. Only problem is it takes ages to work.
Posted 1/3/2023 2:24 PM (GMT 0)
PS, biologics (entyvio, remicade, humira, stelara etc) are all safer than 6MP
Posted 1/3/2023 2:27 PM (GMT 0)
You might want to add a subject line so more people might see it and respond.

I don't know anything about zeposia (other than it's new), but I would think you are a good candidate for Entyvio -- you are not in a major flare so you can take the time needed to see if it will work (it can take 12-16 weeks). I don't know what your doc means by it being "overkill". Entyvio was created exactly for someone like you.

Keep us posted on whatever you decide.
Posted 1/3/2023 6:38 PM (GMT 0)
I understand the fear over escalating drugs. Been there. Didn’t wanna do it. SO glad I did.
Remission is great!

As far as entyvio — almost 6 years on it for me. No side effects. Not sicker than usual (I may have to amend that statement after this last year —had the flu 3x and then covid — but that can be a downside of any biologic. But then again not much in the previous years).

One consideration — remicade and entyvio are infusions. Oh wait — are you in Europe? I think entyvio is switching to self injections that may already be available for you. I believe they’re coming to U.S. this year. Anyway, that can be a consideration — do you want an infusion, self injections, or a pill ? As far as infusions I don’t mind mine at all. Entyvio is not weight based and doesn’t have a slow drip so my infusion takes only 30 minutes every 8 weeks. Only once have I had to adjust the timeline because of vacation.

Good luck with whatever you decide. I think you’ll be glad you did it. Keep us updated on your decision!
Posted 1/3/2023 8:49 PM (GMT 0)
I'm just going to chime in that when I had to step up to a biologic last winter (I'd gone more than a decade without medical treatment, but the disease progressed and we found out I didn't tolerate mesalamine suppositories), my GI recommended we start with Entyvio because of its safety profile. He said "step up" approaches are falling out of favour, and that doctors are now encouraged to start patients with moderate illness on biologics to try to head off unnecessary fluctuating damages.

I don't know a ton about Zeposia, but from what I do know, I'm surprised it's your doctor's first choice. I am at ten months on Entyvio, and it has been working well for me without any discernible side effects other than a day of fatigue at infusion time.
Posted 1/4/2023 4:27 AM (GMT 0)
Thanks everyone for your reply.
Yes, my head is spinning but I am getting to realize that resistance isn’t a solution. I am running low on my emotional strength.

I have a good GI and I trust him but I also feel more comfortable about Entyvio. So thanks for the feedback.

@Poopydoop - I will think about second opinion

@CC - I have no idea why he thinks Entyvio would be overkill but that’s what he said

@Flower - I am in US, in Philadelphia area. Speaking of meds for me safety is more important than convenience. (Pill versus infusion). Another concern regarding Entyvio is insurance. I am turning 65 in few months but my husband still works and I am on his insurance. They just stopped paying for mesalamine enemas. Since they never really worked for me it wasn’t a big deal. But it made me realize that insurance rules.
Is there a way to know beforehand if they would pay for Entyvio? I have Keystone east. Because if insurance denies it’s no longer your choice.
Posted 1/5/2023 8:18 AM (GMT 0)
Lka I have Medicare. Infusions are covered under the medical side since they are doctor/hospital settings so the medication does not go towards the prescription side. Medicare pays 80%. You will need to buy a monthly supplement to help cover the remaining 20%. I have supplement plan F which pays the full 20% with no copays. They bill Medicare almost $16k for each infusion but Medicare knocks that down to $5k which they pay out. The supplement is required to pay with no arguments once Medicare pays. So blue shield pays another $1k for each infusion. So well worth the monthly price, I don’t think plan f is available any longer. I hear plan G is the next best but don’t know what their payouts are. When I first started entyvio they told me Medicare doesn’t require pre approvals. They pay their set amount so the supplement to help pay the 20% is very important. If the self injections are approved that will be a whole different ballgame because that would then go to the prescription part D plan and they don’t pay for crap — which should be a big consideration should you decide on zeposia. Let me know if you have any other questions. Medicare is confusing at first but doesn’t take long to understand it once you figure it out.
Posted 1/9/2023 6:43 PM (GMT 0)
I wouldn't want to take zeposia first. I waited a long time before trying any biologics and was never in a deep remission either. I wish I had tried Xeljanz a lot sooner and not been on steroids so much.
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