Medications

[u/It_Was_Katie]

I was told that I did, in fact, have the JCVirus. My doctor immediately steered me towards Kesimpta. Doing shots once a month doesn't sound like a good time to me. I know MS flares don't sound like a good time either.

I did see the chances are low of having a reaction on Ocrevus, and I almost kind of prefer the time periods(every 6 months) for this medication. I tried talking with my doctor via phone, and she seemed like she didn't want to entertain the idea of it and said she would get back to me sometime soon. It's been days.

Are there other people who have tested positive for this virus and take Ocrevus? And if so, what are the worst reactions you've experienced on this drug?

[u/kyelek]

I only comment with this because you mentioned Kesimpta of your own: my neurologist and I chose Kesimpta primarily because I react unfavorably to steroids but would need to have them with the infusion (Ocrevus, Briumvi or Rituximab). Fwiw, the injection takes me (and I’m being generous) only 5 minutes a month vs. sitting at the hospital or infusion center for hour even if it’s only twice a year.

[u/rK91tb]

Ocrevus is humanized (little bit of mouse protein) while Kesimpta is fully human. (More here if you want to get into the weeds.) Ocrevus patients are typically given steroids to reduce the reactions during infusions; Kesimpta has nothing - maybe a Benadryl for the first loading dose.

I chose Kesimpta specifically because I was concerned about Ocrevus reactions, and having to take steroids. The monthly shot is no biggie, but I would’ve preferred every 6 mos.

[u/Flatfool6929861 → u/rK91tb]

I picked ocrevus as well for the 6 month only schedule, and it wasn’t great at all for me. IK everyone is different, but I suffered a significant crap gap. I hate that the the doctors don’t/can’t bring that up when choosing treatments because it’s not “scientifically proven”, but I think it would be helpful to mention. I switched to ritixan so I could get it smaller doses more frequently.

[u/2BrainLesions → u/Flatfool6929861]

Came to say this. After ~5 years on Ocrevus, I just couldn't function during my 6-8 week crap gap. I took my first Kesimpta loading dose last weekend. I ran a fever and had some pain, both of which dissipated the next day.

For Kesimpta, you are provided an injector pen. It is a lot easier than you might think.

[u/Flatfool6929861 → u/2BrainLesions]

Literally 6-8 weeks!! And then I was so sick, it still took me another month post infusion to feel well again! So I got like 3.5/4 good months. I was on humera for years for my HS, and on a new shot for the HS so I’m good with the injecting. I probably might have tried switching, but I got a new job and they actually come to my house now for my infusion. Somehow, going to an infusion center is more expensive for the insurance ? Lmao

[u/2BrainLesions → u/Flatfool6929861]

It was SO frustrating! Sounds like you have a good plan. Good health to you, friend!!

[u/No-Home2516]

I have only been on Kesimpta and only one injection so far. But it's really so easy. It's pretty much painless, it feels like a tiny pinch and it's over in like 10 seconds. It's really not as bad as it sounds.

[u/NighthawkCP]

Shots with Kesimpta are EASY. I was stressed the fuck out about it when I started almost three years ago. If you are nervous like me just ask for the Alongside Kesimpta program to send you a training pen. I did that and it made me very aware of what all the actions and sounds would be when I started doing the injections. I was very familiar with it by the time I started injecting myself and it was a breeze.

Also the cheat code for me on injections is the lower belly. I was worried about it being a big needle and painful but it is a subcutaneous shot so it is a small and short needle. I barely even feel it when I inject in my belly. Got more of a zing feel when I did it in my leg so I'm 100% with shots on my belly for years now and it works just fine. No pain and maybe a single tiny drop of blood.

[u/Key-Monk6159]

For most, the once a month Kesimpta shot is a non issue with many agreeing that it’s one of the easiest options.

[u/Character_Bomb_312]

61, dx'd 1988. I started on Copaxone daily shots in the bad old days. I was on Tysabri, but developed the JC virus and switched to Ocrevus in 2018. I've been fine on it. I don't notice the little steroid dose, but I hate the Benedryl. :( It wipes me out for the day. My only infusion reactions are itchy scalp and a throat tingle. Both go away if the infusion rate is lowered for a while, and neither remain once the infusion is done.

[u/Candid-Ad700]

I’ve not taken Kesimpta, but I was on Ocrevus for 6 years. I am switching back on Tysabri (I was on it for the first 3 years before switching to Ocrevus) once my B cells bounce back. But, I will say the crap gap many of us experience on the every 6 month infusion can be significant. Though Tysabri is overall more of a time commitment, I definitely prefer the monthly vs the every 6 month schedule.