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MS "Crap Gap": A Problem

Dr. Brandon Beaber

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Some people with multiple sclerosis notice a worsening of symptoms between doses of disease modifying therapies such as ocrevus, rituximab, and briumvi. This video explains the symptoms and shows concern for the practice of aggressively dosing these medications frequently to minimize symptoms.

No Increase in Symptoms Toward the End of the Ocrelizumab Infusion Cycle in Patients With Multiple Sclerosis: Symptom Burden on Ocrelizumab: A Longitudinal Study (SymBOLS): https://pubmed.ncbi.nlm.nih.gov/37674...
Ocrelizumab B-cell repopulation-guided extended interval dosing versus standard dosing – similar clinical efficacy with decreased immunoglobulin M deficiency rates: https://www.clinicalkey.com/#!/conten...
Clinical Review Report: Ocrelizumab (Ocrevus): (Hoffmann-La Roche Limited): Indication: Management of adult patients with early primary progressive multiple sclerosis as defined by disease duration and level of disability, in conjunction with imaging features characteristic of inflammatory activity: https://www.ncbi.nlm.nih.gov/books/NB...
The ocrelizumab wearing-off phenomenon is associated with reduced immunomodulatory response and increased neuroaxonal damage in multiple sclerosis: https://link.springer.com/article/10....

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Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.

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Music: INNER GRACE - Copyright 2018 Wilton Vought Source: Really Really Free Music Link: Video T

he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information.

20 Comments

@ericg7183 6 months ago

I was admitted to the hospital in summer 2019, after not being able to urinate, and then my legs giving out and not being able to get up off the floor. The absolute worst I've ever felt in my life. I spent a week in the hospital, and the doctors couldn't figure out what was going on. I didn't know it at the time, but another doctor at the VA was sending me to specialists to both rule out and confirm several things, all part of the process to an approved disability claim, and a few months after my stint in the hospital, I got a call from the MS clinic. More MRIs followed, and then a CSF extraction, and by February, I had a confirmed diagnosis of PPMS. Even though Covid was starting up and things were already shutting down, my neurologist and I agreed on starting treatment with Ocrevus.

I had the crap gap every time my next infusion was approaching, the first two times, I had never heard of the crap gap. Eventually, he agreed, in conjunction with the folks at Genentech, moved me to a five month infusion regimen. It reduced the crap gap to about two weeks, which was acceptable to me. In 2023, I was forced to relocate back to Texas, and had to of course, change doctors. The VA in San Antonio does have an MS clinic, and I was placed with one of the neurologists. Great guy, as sharp as my previous doctor, much more personable. After all the tests again minus the CSF test, he put me back on a six month infusion regimen. This started in 2024. It's a process to get onboarded with the VA after you move. Anyways, here I am, a month out from my next infusion, and though I am feeling a bit more fatigue than in recent days, it's because I have been a LOT more active, just in the last few days.

After speaking with my neurologist, as well as nutritionists, dieticians, and weight management specialists in the VA, everybody is in agreement that much of my improvement in how I feel, can be tied to the dietary changes I have made over the last three years. I have moved to a much heavier intake of proteins and natural fats, as well as whole foods, in comparison to eating a lot of heavily processed foods. I have also been intermittently fasting for the last two years, not deliberately, but just how my eating pattern evolved. I cut out almost all processed sugar and HFCS, and on those times I DO consume some, I can feel the inflammation within an hour. As of my last meeting with my doctor, he feels confident that I am no longer progressing due to no new lesions in my last two years of MRIs, and my EDSS hasn't progressed (still 5.5).

I would suggest to anyone with MS, regardless the medication you are taking, to seriously evaluate your diet, and at least consider adopting a whole foods and low/no processed sugar diet.

@andrewbruce7100 9 months ago

I was diagnosed in 2020 and went on Ocrevus. I think I was still in the middle of a relapse at my first infusion within a few hours of the infusion I felt better than I had in years. My vision improved and I noticed things getting better that I thought were just due to me getting older. I definitely experienced a crap gap between infusions and some of the symptoms would start coming back about a month before my next infusion. After about 2-3 years I switched to Kesimpta and the crap gap has gone away

@LarrisaCummings-u4r 9 months ago

My husband is 70. He was diagnosed at age 67 with SPMS and began treatment with Ocrevus. We believe he had his first MS attack at age 56, and then smaller ones throughout the years that we ignored because we thought it was something else. He has experienced mild crap gap, but the first two were the most noticeable and since then it hasn't been as bad. He is getting his next infusion Jan 8 and so far hasn't had a worsening of MS symptoms during this last month. His neurologist has suggested extending the dose of Ocrevus to 9 months or a year, or even discontinuing use because he is still showing signs of progression which indicate to her that it isn't working that well and due to his age and risk for infection. We are getting blood tests, and if his markers are good we will go ahead with his next infusion, but may consider backing off to once a year. We don't have access to an MS Neurologist or MS Center, but I'm considering taking a trip for a second opinion on treatment options.

@StitchingWithLove 9 months ago

Knowing what markers to test for is so helpful for the patient. Some doctors never share that info. Intuitively my husband (on Ocrevus) felt he needed an extension between treatments. This video is most helpful. Thank you.

@ahmedfowad2122 9 months ago

I love honest opinions! Great job!

@Therealgigabyte 9 months ago

Thank you for the video! Having been on Tysabri for many years, i finally developed new lesions and symptoms. Switched to Ocrevus this past late August. The gap on Tysabri was noticeable since it was dosed so often. So far on Ocrevus im going strong with no noticable gap.

@chrissy2263 9 months ago

I did experience 6-week “crap gaps,” and for a long time I thought they were mostly psychological. I also agreed with the idea that the IV fluids and steroids are what make people feel so good immediately after an infusion. However, I recently switched from Ocrevus to Kesimpta, my first dose was Friday, and it’s made me reconsider. I’m in the Northeast, and we had a particularly cold December. I was at the end of my Ocrevus dosing cycle and was extremely tingly. After taking Kesimpta, the tingling has noticeably subsided, even though it’s still very cold here. I don’t know what to make of that yet. Since your climate is more moderate, I wonder whether extended-interval dosing works better there. I was on a January/July Ocrevus schedule, which feels especially challenging in the Northeast — you’re pushing through the holidays and dampness and cold then dealing with extreme summer heat and humidty.
So I do think there’s an important piece of this puzzle that hasn’t been fully explained. There are simply too many reports of “crap gap” (61% you mentioned) for it to be inconsequential.
Anyway, I really enjoy your content and wanted to wish you a Happy New Year.

@ernietollar 9 months ago (edited)

This reminds me that I have to take a stab at.Doing the epley maneuver ,

about ten years ago I had one single, really intense attack of vertigo so bad that I had to just lay down, w. my head on the sidewalk, which was triggered by hurriedly cutting down a weed tree in front of the house on the main street where I live. From that moment on, I had mild Vertigo. My PPMS diagnosis came several years later and to this day although it's likely that it was early signs of MS
It is possible it's a coincidental case of benign positional vertigo, also.

@joaodotcodes 9 months ago

Usually feel what I'd describe as a crap gap every month, a few days before my KESIMPTA dose.
Also, have low IgG. Have had some upper respiratory infections, especially last year, where I had to take antibiotics - no change to the KESIMPTA monthly regimen were made.

@ericag2233 9 months ago

I only take Low Dose Naltrexone that does reduce my symptoms. And I love your info on salt and steroids having a major immediate effect!

@andrewreisinger6860 9 months ago

Great video! I think crap gap is a real phenomenon, although probably not always a direct result of the B cells returning. MS patients, for the most part, don't lie about the way they are feeling. I also think the solumedrol given with the infusion has a significant impact on the patient, making them "feel better". When I was taking Ocrevus, I felt great for a few days after the infusion. I am on Kesimpta now, and don't experience this anymore. I wish steroids didn't have such negative side effects, or I would use them much more, lol!

@swiles 9 months ago

This video is really interesting 🤔 Thank you Dr. Beaber! 😄

@Stiller.Permaculture 9 months ago

Going to have to watch this again soon. There’s a lot of good info here. I constantly feel dehydrated for no reason. I have 32 oz glass that I sip on all day. I drink fiber in water, then electrolytes later. My wife is a Wahl’s certified provider. She keeps track of what I’m doing, eating and supplements I take. She draws labs every three months and we work on any deficiencies I have. Yet, weird problems remain. Thanks for the insights and happy new year.

@jude4896 9 months ago

Thank you for sharing 👍

@illtemperedklavier-ir9fy 9 months ago

Kesimpta has been the best antidepressant I've ever tried, which is not entirely shocking when you think about how common an ms symptom depression is.

@RonaldBeirouti 9 months ago

Thank you for the clear and objective presentation on that delicate/controversial topic. I started Ocrevus in 2017, eight years ago. Firstly, I was lucky to see many of my symptoms improve since. Was it caused by Ocrevus? I don't know, but I do know that fatigue, cognition, improved gradually over the years. Some symptoms that were daily like leg heaviness, tingling in the legs, have become very rare.
My hypothesis (with no evidence of course) is that Ocrevus is keeping inflamation at bay while I adhere to a healthy lifestyle: daily endurance and strength exercise, healthy diet (plant based whole foods diet), improving sleep with CBT-i, etc. I'm assuming the CNS slowly improves through plasticity, remyelination and just learning to live with MS.

Before starting Ocrevus, my neurologist told me that he would like me to skip a dose every two to three years. The deal was that if ever I felt any symptoms creeping back we would resume infusions. After four years, I skipped a dose which went well at first. At month 8 (ie 2 months delay) I started noticing symptoms reappearing: tingling in the legs, increased fatigue and cog fog and even a new symptom of persistent pain in the feet. I got an infusion at month 9 and these symptoms went away quite rapidly. Other than this experience, never had that notorious crap gap. I returned to infusions every 6 months since.