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

[CatsandCars in reply to ahrogers]

Sorry for not responding sooner. I typed out a reply to you yesterday, but I don't see it, so I guess I forgot to hit the post button or something! Thanks for responding. I'm sorry that you're looking at having to go on disability. I hope that you were able to work and have a career for a decent amount of time? It was smart of you to think ahead to having that possible gap with no insurance before Medicare kicks in, but I'm glad your doctor feels that she can keep you on Ocrevus if you lose your insurance.

Ocrevus is a great drug for a lot of people, but the longer I'm on it, the worse I feel. I've had painful spasticity that has interfered with my mobility, and I had a bad relapse last year as well. So I'm glad that my doctor is okay with me switching 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!

[CatsandCars in reply to kdali]

You're not dumb at all. Thank you!

[Tuliplover]

I have not made this switch but was interested to see what others would comment as it has been suggested that I consider Briumvi due to crap gap. On Ocrevus 2 years, 4 months.

Hope you are able to get started with your Mavenclad soon!

[CatsandCars in reply to Tuliplover]

Thanks Tuliplover! I hope whatever you decide works out for you.

[Robsmom]

I was on Ocrevus since 2017, and I used to experience the crap gap at about 4 1/2 months between infusions. I had my last infusion July of 2023, and when it was time for my next one in January 2024, I decided not to have it. I didn't have any crap gap this time, and I was showing signs that my immune system was slowing down naturally. So, now it's been a year since my last infusion and still no crap gap symptoms.

[CatsandCars in reply to Robsmom]

Thank you, Robsmom. I'm glad that you didn't have any crap gap issues when discontinuing Ocrevus!

[KipAngCan]

Hi!! I did the switch from Ocerevus to Mavenclad about 3 years ago. I had horrible crap gap with Ocerevus but I’m post Mavenclad for a year and a half now and I haven’t had any “crap gap”. My neurologist switched me because he said with the type of MS I have(SPMS), Mavenclad would be more effective. I was lucky and didn’t have any significant side effects with either medication. I hope you can get your medicine soon!!

[CatsandCars in reply to KipAngCan]

Thanks so much for sharing that. I'm really glad that you're doing well after taking Mavenclad, and it's wonderful to hear that you didn't have any side effects. 😊

[Greentime]

Best of luck to you CatsandCars.

[CatsandCars in reply to Greentime]

Thanks, Greentime! 😊

[MSCoach50]

I have been on Ocerevus for over 2 years with no problem's.... however recently I have been "wearing through my Meds" and having horrible side effects and a relapse. MY neurologist has suggested Kesempta (sp) witch she says is very similar to Ocerrvus but I would administer myself once a month. Any experiences with this transition.

[CatsandCars in reply to MSCoach50]

I haven't had any experience with Kesimpta, but if you made a separate post, I'm sure others would share their experiences. I'm obviously not a doctor, so I'm not qualified to judge, but I wonder why Kesimpta would be better since they both work the same way. You would be getting it on a more consistent basis, I suppose. Anyway, I'm really sorry to hear that you're having breakthrough disease activity and had a relapse as well. I hope that you do well on Kesimpta!

[MSCoach50 in reply to CatsandCars]

My (O) is wearing off before I get to the with month waiting time for my next shop and she believes giving myself monthly doses could prevent that

[CatsandCars in reply to MSCoach50]

Ah, that makes perfect sense, then! Thank you for satisfying my nosy curiosity. 😅

[GodIsAliveAlways]

I have to say when I was getting close to my scheduled infusion for my ocrevus I would call my neurologist and complain with these symptoms and he would ask if I was scheduled for an upcoming infusion. Of course I was. Then I would get my infusion and go happily on my way. Then he changed my medication to Mavenclad. The first missed infusion was the same as far as my body trying to let me know it was unhappy. Then my Mavenclad was finally approved thank you United Healthcare insurance. I started and the “symptoms” quickly disappeared and I never had them again even after my DMT treatments were finally discontinued due to my aging out and having my 60th birthday and 25+ years of having ms!

[CatsandCars in reply to GodIsAliveAlways]

Hi, GodIsAliveAlways! Thanks so much for responding. It's really great to hear that the unhappy symptoms from your body not getting Ocrevus went away after taking Mavenclad. Hearing that makes me feel better. I'm happy to hear that you're doing well after having Mavenclad, and for having MS for over 25 years!

[GodIsAliveAlways]

I am actually doing fantastic. I got to a point where I just let my faith in my Lord take over and quit letting my MS and all that involves win. I simply refuse to give into it. It’s stolen enough from me. I absolutely refuse to let it steal my joy, my peace and my serenity. Those things belong to my Jesus because He who is in me is greater than He who is in the world. MS is not in me it’s simply in the world and attacks innocent joyful people who are simply in the prime of their life. So yeah thanks for being happy for me. I pray you find the same strength and joy in the Lord. Please don’t let MS win another second in your battle. I don’t know you but I know oh I know that deep down inside you are strong and you don’t need to give an inch in your battle with this silly disease. God bless you abundantly.

[CatsandCars]

Thank you for your heartfelt wishes. That means a lot to me!

[stepsforNeeC]

So so sorry. Great response from the community to treat your symptoms individually and try to at least get some relief! I don’t have experience with Orcevus but we all have had our experiences with suffering. Stay strong my friend 💐🙏. NeeC Blessings and Healing

[CatsandCars in reply to stepsforNeeC]

Thanks for your kind support, stepsforNeeC. Lots of baclofen and pain cream for me! Yes, we have indeed all had our experiences with suffering, very well put, but hopefully something good will happen soon, God willing. ❤️ 🙏

[Linda3579]

sorry I’m so late answering this. I just saw this post. I’ve been off ocrevus for 8 months. I will probably go back on it soon. The cog fog is the worst. I don’t know when or if it will go away. I hope you are doing ok.

[CatsandCars in reply to Linda3579]

Thanks, Linda3579. I'm sorry you've had terrible cog fog. I am still struggling with pain and spasticity, so I'm taking a ton of baclofen, which pretty much leaves me feeling tired and brain-dead. I will be starting Mavenclad pretty soon, although I don't think that works right away. At least it's a plan!

[Linda3579 in reply to CatsandCars]

I struggle regularly with spasticity too. My neurologist wants me back on Ocrevus. I’ve read some good things about Mavenclad. I hope it works well for you.🤞

[CatsandCars in reply to Linda3579]

Thank you. I hope you feel better once you're back on Ocrevus!

[Linda3579]

thank you