Can Anyone Who has Discontinued Ocrevus Please Tell Me What Happens With Crap Gap Symptoms?

[CatsandCars]

Hi all, I posted a while back about stopping Ocrevus and starting Mavenclad. I am turning into a skeleton waiting for the Mavenclad to be approved 💀🦴💀🦴 (figuratively, not literally), and tomorrow my Ocrevus infusion would be happening if I had not decided to switch. I am okay, but experiencing some "crap gap" symptoms, like extra spasticity and increased cog fog. Can anyone tell me what happens with those symptoms when you're off Ocrevus for longer? I'm just curious if your symptoms level off. Thank you.

[NorasMom]

I can't help, but I feel bad that no one's answering. I stopped Ocrevus after the first two half-doses because of side effects, so it was nothing but a relief to me. I've never had to deal with the crap gap, so about all I can suggest is just to treat the individual symptoms as best you can.

[CatsandCars in reply to NorasMom]

Thanks, NorasMom! 😊 It's interesting, because I have been Ocrevus for two and a half years, but never experienced the crap gap or infusion side effects until six months ago. I'm sorry you weren't able to stay on Ocrevus, but unless I'm mistaken, it sounds like you're doing pretty well? I hope so! 🩵

[NorasMom in reply to CatsandCars]

Oh, I'm fine! I'm part of the "MS many decades before DMT's" group, and I've been blessed with slow-moving health problems.

[CatsandCars in reply to NorasMom]

I'm so happy to hear that!

[ahrogers]

I asked my neuro last week about switching from Ocrevus to Mavenclad but she didn't recommend it. She said since I haven't had any new lesions or any side effects there was no reason to change to a med that causes irreversible changes and could cause side effects. She considers Mavenclad higher risk than Ocrevus. I was hoping to be able to be done with DMTs by the time I have to go out of work on disability. She said if I somehow ended up with no insurance coverage, she would find a way for me to get Ocrevus for free. I got my infusion Friday and do have an uptick in fatigue as I usually do when it's time for next infusion. Luckily, fatigue has been better since I started taking Athletic Greens a couple months ago. Should improve in next week or two. kdali might have an answer since she went from Ocrevus to Kesimpta to Mavenclad

[kdali]

I experienced improvement each month since I quit Ocrevus. I didn't have crap gap. I'm sorry to hear you are struggling. There are so few users here who have made that switch, and I think you would find more replies or information if you looked at the FB group for Mavenclad.

I had a 9mo wait to start, and a few of those extra months were my fault because I had waited to get my shingles vaccines and skin check. You're probably kicking your own butt right now questioning your decision since you're miserable.

What's this skeleton bit about, are you not able to eat?

[CatsandCars in reply to kdali]

Hi, kdali. I'm just joking about the skeleton bit, because I've been waiting a long time to hear about starting Mavenclad, like over a month, which is a pain but not super surprising considering insurance and what not. Sometimes people will post a picture of a skeleton as a joke about waiting, but I guess that works better as a visual!🤪 I would only be getting my Ocrevus infusion tomorrow if I was staying on it. I'm not feeling terrible or anything, just curious about what happens. Thanks for your concern, though, I appreciate it very much! 🩵

[kdali in reply to CatsandCars]

Oh, I get it now! 🤦‍♀️ A month isn't long in Mavenclad time 🫣 I know the memes, but I'm dumb sometimes (ok, often 🤦‍♀️). I'm glad you're not miserable!