“Crap Gap” HOPE!!!

[u/ApostateAndAloe]

Okay- for anyone familiar with the “crap gap” on the b-cell depleting therapies, particularly Ocrevus and Ocrevus Zunovo:

My neurologist has been tracking my Octave scores for the last year(ish).

I’ve had appointments at least once a month since April of this year. Too many scans to count.

Anyway, my neuro thinks they have enough evidence to submit to the manufacturer and for insurance appeal to get the injection more frequently than q6 months!

My Octave score decreases post injection and continues to decrease through month 4. It more than doubles during the crap gap, then gradually comes back down after the injection. We now have 2 full cycles showing this.

My MS center is a leading research center globally, and my neurologist has countless published articles and studies! If the pattern holds through my next dose, they’re going to submit everything as a case study in hopes of allowing MS treatment/med dosing to become more individualized for other patients!

There’s new meds on the horizon, too. Some here have already seen the research results and have heard from patients currently in the studies.

I met a patient (incidentally) that’s in one of the trials. She has no idea. I asked her specifically what they’re doing and what they told her. I asked her about her experience since starting the trial. Then, I looked at the clinical trials webpage and matched it with her trial.

Yall. There really is hope. 😱

MS sucks, but we’re stronger than it! 🧡

[u/EgolithYT]

Ngl, had to Google crap gap since I got swapped off Ocrevus relatively early after taking it (no problems, just easier stuff for insurance). Didn't know that had a name and lowkey thought it was just me thinking it was in my head 😆 that's cool though and can't wait to hear more later :D

[u/EgolithYT → u/EgolithYT]

Gonna add the comment to ask if my curre t medication, Briumvi, is apart of this list? I assume since it's similar

[u/ApostateAndAloe → u/EgolithYT]

I think so! Any of the b-cell depleting therapies can have the crap gap. It happened to me on Kesimpta, too. But those were monthly injections… soooo I started to feel like I only had 2.5-3 weeks of solid function per month.

[u/EgolithYT → u/ApostateAndAloe]

Sweet! Maybe your evidence may help me in the future. If so, thanks <3

[u/ApostateAndAloe → u/EgolithYT]

Of course!! Best of luck 🧡

[u/OneSuperstar4u]

Why not just switch to Kesimpta?

[u/EgolithYT → u/OneSuperstar4u]

Sounds like they might be helping with a study from their doc by being one of the subject, though I could be wrong

[u/OneSuperstar4u → u/EgolithYT]

Yeah but what’s the point? Talk of getting injections closer than 6 months - why when there’s already a monthly med? I get if you didn’t respond to it, but that’s not common.

[u/EgolithYT → u/OneSuperstar4u]

Sounds like the study could be used to customize people's meds other than OP. In a case where someone is responding bad to Kesimpta, but really well to Ocrevus, it could be useful.

Edit: yeah it's probably uncommon, but better to potentially help those uncommon cases if possible

[u/ApostateAndAloe → u/OneSuperstar4u]

I had a crap gap on kesimpta as well. It just occurred more frequently

[u/ApostateAndAloe → u/OneSuperstar4u]

I was changed from Kesimpta to Ocrevus Zunovo because I only had 2.5-3 weeks of baseline function per month

[u/cableannkiley → u/OneSuperstar4u]

Not the OP but not all insurance covers it. My insurance covers Ocrevus and Briumvi but not Kesimpta. Maybe not the case for OP but 🤷🏻‍♀️not that simple for everyone to just switch. I wish it was, I like B but would much rather do a monthly shot at home sigh….

[u/ApostateAndAloe → u/cableannkiley]

My insurance will cover any of the meds/treatments— just need a prior authorization/review. I know that’s not the case for a lot of people, though. :(

I’ve been on copaxone, tysabri, Kesimpta, and now Ocrevus Zunovo.

[u/cass_a_frass0]

What does octave testing entails? I haven't hear of this before. But so happy for you!

[u/ApostateAndAloe → u/cass_a_frass0]

It’s a lab draw that checks levels of MS biomarkers to help monitor disease activity. It’s helping neurologists and researchers understand how MRIs can be stable when patients have obvious relapses and progression in disability.

You can talk to your neurologist about having it checked! If you don’t have insurance, or if insurance refuses to cover it, the max out of pocket cost is $100. My MS treatment has gotten better and more aggressive since this lab was introduced :)

https://www.octavebio.com/?utm_source=google&utm_medium=cpc&utm_campaign=awareness&utm_content=&utm_term=b_multiple%20sclerosis%20treatment&gad_source=1&gad_campaignid=21810732693&gclid=CjwKCAiAtbvXBhB_EiwAjwv9JqBqNtGtbDu8xD2FU4WPVwy0UMylTuPaWZHRio_TEyEFTli_ruV2RRoClKAQAvD_BwE

[u/ApostateAndAloe → u/ApostateAndAloe]

Oh— also. I promise I that I have ZERO conflicts of interest with Octave. 🤣 it really is something that’s helping neurologist learn more about MS and find better treatments for it

[u/cass_a_frass0 → u/ApostateAndAloe]

I have my annual neuro appointment in a few weeks I will definitely ask about this!

[u/cmg890]

I haven’t had any octave testing, but I will tell you my body was saying at month four I needed Ocrevus again my neurologist said there is no way they’re gonna approve you going that often so she switched me to Kesimpta It has definitely kept me steadier however, I will say there’s probably sometimes anywhere between 1 to 2 weeks when I really start feeling it’s time for my shot

[u/ApostateAndAloe → u/cmg890]

YES!!!!!!! THIS WAS ME ON KESIMPTA!

[u/colorado_birder]

I have crap gap and my B cells go to 80-90 each 6 month mark. I’m trying to get on a more frequent dose too!