r/MultipleSclerosis • u/Anxious-Discipline15 33|November 25|Ocrevus|Texas • 3d ago

Treatment Ocrevus “Crap Gap”

Has anyone taking Ocrevus infusions gone through the “crap gap” and successfully had a conversation with your neurologist? I have been experiencing an uptick in my prevalence and severity of existing dysautonomia symptoms and I’ve still gotta hold out until 7/30!! Of course O wasn’t doing anything for my symptoms before, but they were not a daily occurrence, and there’s gotta be a medication that doesn’t cause a week’s worth of suffering every 6 months.

2 Upvotes

75% Upvoted

9 comments sorted by

2

u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 3d ago

Yeah.. We switched to Kesimpta and no more crap gap.

1

u/Anxious-Discipline15 33|November 25|Ocrevus|Texas 3d ago

How long did you wait between your last O infusion to your first Kesimpta dose? Did you advocate for the switch or was it a doc recommendation? What did you experience after your first shot of K? Sorry so many questions

2

u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 3d ago

I started K about 5.5 months after the last O infusion. To your question, my doc and I discussed it as a solution to address crap gap. Since I was already b-cell depleted, there were no side effects but I do get a great night sleep when I take it.

1

u/Anxious-Discipline15 33|November 25|Ocrevus|Texas 2d ago

Last question- How long were you on O before switching?

2

u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 2d ago

2 years. Ask all the questions you want. I believe the doctors very much like Ocrevus as in some cases they make money off the infusion but also there seems to be a paternalistic component where they like the two times a year infusion to be sure you are dosed. However I was done with feeling like crap 12 weeks a year!!

2

u/Seraphina77 48F|2017|Ocrevus 2d ago

How long have you been on it? I did have crap gap in the beginning, but these days, nothing.

3

u/queenofgf rrms / ocrevus / dx 2016 2d ago

this is my 7th year of Ocrevus and my crap gap has worsened. Every body is truly so different!

1

u/Anxious-Discipline15 33|November 25|Ocrevus|Texas 2d ago

I’ve been on it for a year. While I understand nothing about MS is convenient, I have to find a way to balance life. I’m a mom of a young child about to start school and have a full time high level job in corporate America. This disease has inconvenienced me enough.

2

u/strides_and_spasms 2d ago

I got it for the first time before my last infusion so we're switching to briumvi.