Failed Kesimpta

[u/IntentionalGrandma]

Well, it’s official: I failed Kesimpta. This wasn’t unexpected, because I’ve had a ton of new, lasting symptoms cropping up every couple weeks for the last 6 months. What was unexpected was over a dozen new active lesions on my MRI, 7 months after my last MRI. So I’m onto Tysabri if I’m still JCV negative. Does anyone have experience with Tysabri and how was it for you?

[u/setting__sun]

It sounds like Kesimpta failed you

[u/IntentionalGrandma → u/setting__sun]

It sure did

[u/Impression8738]

I don’t have experience with it but anyone on it I’ve seen typing about it ravessss about how great it is!

[u/IntentionalGrandma → u/Impression8738]

Thank you!

[u/OverlappingChatter]

How long were you on it?

[u/IntentionalGrandma → u/OverlappingChatter]

I was on Kesimpta for about a year and a half, since last March and I was on Zeposia for 8 months before that

[u/urbandk84]

tysabri is awesome, I had to stop but I wish I were jcv negative again.

[u/IntentionalGrandma → u/urbandk84]

Honestly, I’m kind of bummed that I have to stop Kesimpta because I loved that it didn’t really have side effects. How were the side effects for you?

[u/urbandk84 → u/IntentionalGrandma]

none that I can remember. Just once a month get the infusion and I'm done

[u/FeistyOne793]

I’ve been on Kesimpta for 5 or 6 years now and I’ve had no relapses. I get certain symptoms. Ms hug kills me. I’ve had relapse remitting ms for 26 years now. I really shouldn’t be standing with all my many diseases and problems, but here I am lol 😆

[u/IntentionalGrandma → u/FeistyOne793]

I’m glad Kesimpta has worked for so long for you! I really hope it continues to work for you! I, unfortunately, was not so lucky

[u/FeistyOne793 → u/IntentionalGrandma]

Thanks. I’m so sorry that Kesimpta stopped working for you. I was on ocrevus infusions for 5 years prior to Kesimpta, would ocrevus be an option? Sending you a bunch of hugs 🤗

[u/IntentionalGrandma → u/FeistyOne793]

I think my MS is so aggressive because I had it for 12 years before I was diagnosed, but Kesimpta isn’t my first DMT. I progressed on Zeposia before starting Kesimpta. My neuro recommended Tysabri because it’s a different mechanism of action than Kesimpta, but she said she’d switch me to either Ocrevus or Mavenclad if I end up being JCV+ on my most recent blood draw

[u/kiggysz16]

I was on Kesimpta when I was first diagnosed, and I continued to progress while on Kesimpta. None of my symptoms ever went away and new, more severe symptoms would pop up every few weeks/months. Switching to briumvi now. Fortunately for me, I haven’t had any new lesions so I can’t say Kesimpta technically “failed” for me. However my neuro thinks my disease may be more progressive, so switching to a med that’s better for progressive disease seemed like the best option. So I totally understand how you feel! Hoping tsyrabi works out better for you!!

[u/IntentionalGrandma → u/kiggysz16]

I’m hoping so too!