MS Treatment

[janetdm]

I have been on Tysabri and will be changing medication. My Dr suggested either Mavenclad or Zeposia. Is anyone on either of these medications, and if so, can you give me your feedback on it?

Thank you.

[NorasMom]

I can't help with any of those, but I didn't want your message to get lost in the shuffle. Good luck!

[Mymella]

I was on Tysabri twice but each time the JC virus was detected so I had to stop. My neurologist put me on Tecfidera. I've been on ocrevus since 2018. I haven't tried Mavenclad nor Zeposia. I hope one of them works for you though.

[janetdm in reply to Mymella]

I just got the JCV antibody as well. That’s why I’m going off.

[kdali]

I'm feeling great on Mavenclad so far! I would check out Facebook groups for both meds and see what the real world users have to say too. I think changing from Tysabri is rough for many if they really felt well while on it. GL!

[Xvettech]

my cousin (who also has ms) is changing from Ocrevus to Mavenclad. I wish you the best!

[Espeon]

Hi, just wondering why you r leaving Tysabri? I haven’t been on any other medications so can’t give advice on that. I’m never going to get off Tysabri if I can help it. I’ve been on Tysabri for over 13 years and now get it every 5 weeks to reduce PML risk.

[janetdm in reply to Espeon]

I got the JCV antibody and am afraid that I’ll get PML. I would have loved to have stayed in it

[KipAngCan]

Hi!! I just finished my last dose of Mavenclad this month and I had a neurologist appointment today. He tested my strength in both arms, legs, hands, and feet and declared my strength is greatly improved from January 2022 when I started treatment. I took Ocerevus for 2 years but he felt Mavenclad was a better choice for me. I did not get the “crap gap” that I felt with Ocerevus and I had extremely minor side effects that resolved within a few weeks. So far, this has been a good choice for me but everyone is different. Good luck and healing thoughts coming your way!!

[janetdm in reply to KipAngCan]

Thank you so much for your reply. This was helpful.

[kdali in reply to KipAngCan]

Congrats on completing year 2 and strength gains! 🎉🎉

[Tuliplover in reply to KipAngCan]

Hi! Congrats on your strength gains & positive experience on Mavenclad! If you don’t mind sharing, how do you feel on Mavenclad compared to how you felt on Ocrevus? The reason I ask is…

I was on Tysabri for 6 years. I felt pretty good. Last March, I became JCV positive & had to switch. Now on Ocrevus. March 22 will be my 3rd Ocrevus infusion… but I do not feel nearly as well on Ocrevus as I did on Tysabri & am very curious if I might feel better on another drug.

Did you ever take Tysabri? Thanks!

[KipAngCan in reply to Tuliplover]

Hi!! I have the JC virus too so I did Ocerevus for 2 years and even though I had no side effects and tolerated it very well I had the dreaded “crap gap” when it was before time for the next infusion. My awesome neuro flipped me to an MS specialist in his same practice. He readily admitted that this other Dr could serve me better because he had much more experience and knowledge. That made me love him more because he has no ego(I came across way too much of that in my quest to be diagnosed). The new neuro has 180 patients on Mavenclad and thought it would work for me. I feel much, much better on it. (No “crap gap”) I just passed my 3rd anniversary since my diagnosis so I’m really a toddler at this. I hope whatever decision you make is the right one for you and you feel good!! Sending you good vibes!!

[Tuliplover in reply to KipAngCan]

Thank you so much for sharing! That’s great that you feel better on Mavenclad and no “crap gap”! I truly appreciate you sharing your experience.

So, you started Mavenclad in January 2022? Did you feel the same/steady then throughout the year if you aren’t experiencing any sort of crap gap? That’s a foreign concept to me bc Tysabri & Ocrevus are fluctuating.

Thanks again 🧡

[Sandydemop]

I had my first year of mavenclad: 5 pills in Nov and 5 pills in Dec. It seems to be working fine. i just had a little nausea. I would have loved to be on Tysabri but the JC virus thing is problematic.

[Fancy59 CommunityAmbassador]

janetdm, I was on Tysabri for about 2 and a 1/2 years and I loved it. But I have the JC virus and it kept increasing and I had to get off of the medicine. I love the medicine and I saw a noticeable improvement in my MS while I was on it. But it just wasn't worth the risk of getting PML. I went to a Mavenclad seminar and I was very interested in the therapy but my neurologist was concerned it was to aggressive and I didn't try it. I'm still thinking of asking him if I can try it as he took me off Ocevus becaùse my immune system is aging as I approach my mid sixties and I had a very serious ìnfection partially caused by my lower immune system from my age, my MS, and Ocrevus which lowered my immune system even more . I have no information to share about Zeposia. Good luck in your decision and let us know what you decide and how it goes. There is much we can learn from each other. Together we are stronger. Fancy59.

[janetdm in reply to Fancy59]

Thanks for your response. I too am in my mid 60’s. Unfortunately I haven’t been on Tysabri long enough to see. An improvement, only seven months and already contacted the JC virus. So will have to make a decision soon. Thanks again.

[Tuliplover]

Unfortunately, I do not have anything helpful to offer but would love to follow your experience as I had to get off Tysabri last March due to positive JCV. I was on Tysabri for 6 years. I do not feel nearly as well on Ocrevus as I did on Tysabri & am very curious if I might feel better on another drug. Thanks!