Zeposia experience?

[Roamerwithroots]

I am starting this medication next week (it arrives tomorrow and I want to prepare myself for it). I don't see any recent posts about people who are taking it, so I thought I'd ask. Is anyone on this forum currently taking Zeposia that can offer feedback?

[CatsandCars]

I have not tried Zeposia, but it is an S1P modulator very similar to Gilenya, which I was on for about four years. No real side effects except I got a lot of bruises. My MS was really stable on it, and I liked it. I only stopped because my white blood cells eventually tanked.

One thing I didn't know to ask about at the time was whether "rebound", or a dramatic worsening of your MS can happen when you eventually stop using it, and if so, does your doctor have a plan for preventing that from happening. It's supposed to be rare, so perhaps a moot point, but YouTube MS doc Aaron Boster says that he gives patients steroids if they can't change to a new med immediately, such as if you have to wait for your white blood cells to recover. My doctor is an MS specialist and I think he's good, but he doesn't do anything during the transition because rebound is rare. I would do Gilenya again, but it would be nice to have a plan to prevent rebound in place.

I hope this is somewhat helpful. Good luck to you!

[Roamerwithroots in reply to CatsandCars]

thanks! Yeah I thought I was starting Gilenya but my doc chose this one instead, saying it was similar. I just never hear of people taking it and I wonder why it’s so rare. I will ask about the rebound effects. I could not tolerate Aubagio (low wbc count).

[CatsandCars in reply to Roamerwithroots]

It sounds like Zeposia, which is newer, can be started on a lower dose and titrate up to avoid slowing the heart rate, whereas with Gilenya you have to take your first dose and be monitored for a low heart rate for six hours. Supposedly there's not a PML risk like Gilenya. One nice thing about Zeposia is that being approved in 2021, there's no generic yet for your insurance company to force you into. Most of my meds are generic and they're fine, but some people had trouble with some of the generic versions of Aubagio. It's kind of nice to have brand name for your DMT, as long as you have insurance! Good luck on Zeposia. I hope you do well on it!

[Roamerwithroots in reply to CatsandCars]

They sent a nurse to do a home health baseline assessment! EKG, bloodwork, and an eye exam. That was a first. I appreciate you always hopping in to answer my questions.

[CatsandCars in reply to Roamerwithroots]

Wow, a home visit? That's really impressive.

Thanks. It makes me feel good to make myself useful. 😅

[CatsandCars]

Description of Zeposia from MS-selfie

DMT Info Card

[CatsandCars in reply to CatsandCars]

As compared to Aubagio

Aubagio card for comparison

[SaltyGirl]

Hi there! I’ve been on Zeposia for close to 2 years, and after about 9 months of nervousness I got to be ok, and more stable. It really helped my symptoms of incontinence, thank goodness. Had been on Interferons for about 20 years, and they just stopped really helping me. Thankful for Zeposia. Good luck, wish you well!

[Roamerwithroots in reply to SaltyGirl]

thank you! It’s been so hard to find anyone talking about Zeposia like they do with the other med options. I am going to check in with my doc with last minute questions tomorrow before I bite the bullet. You haven’t had major side effects from what it sounds like so that is great!

[SaltyGirl]

You should check out the website for its MS application, On the website it mentions, “tyramine.” This is where blood pressure issues might come in. (I read the Internet somewhat obsessively about health, not recommended!) It’s not too hard to watch your diet regarding these issues, though, I seem to be ok, all told. Whew. Haven’t really had any pain or discomfort with the medicine. No relapses or new lesions! Again, I wish you the very best!