I’m in my 20th year with MS, and my sixth year on Ocrevus, with extended interval dosing. My B cells start to come back at 12-14 months after an infusion. I’ve had no serious relapses and no new lesions. I’ve had three minor flare-ups while on O, which were taken care of with three-day courses of corticosteroids. I’ve been quite happy with how steady my health has been in these six years. When I do get an infection - cold, flu, whatever - I seem to take longer to recover from it than before I went on O. I have no data to support this, just my impression. I’m glad my doctors have me on EID. It seems like a safer approach than standard dosing.
@shawnbeckystufft75413 ай бұрын
Curious, what is your age? From the research I have been doing, it seems like this is a major variable. Most of the safety trials were done with younger adults (30-45). I have been in the MS club since 2003. Long term user of Copaxone but switched to Ocrevus 5.5 years ago. Doing extremely well on Ocrevus but my neurologist has warned me that I can’t be on the drug forever. She doesn’t define forever for me. I am now 59 and thinking about pushing next infusion to 12 months and monitoring B cells, Igg, and crap gap to watch for any changes. B cell count has been zero for last five years and igg levels fell by 12% over last two years, but are still in the middle of the range. I’m open to good suggestions from the MS community!
@garyrooksby8 ай бұрын
Fascinating! Thanks for trawling the trial data for us. I'm on Ocrevus myself and am on an extended interval with B-cell monitoring to time my COVID, flu and shingles vaccines. My MS team and I wait until my B-cells have risen to a "useful" level then I get my jabs, leave it another month for them to work and then have my next infusion. No lesions detected by MRI since early 2020, RRMS prior, EDSS 4.5, diagnosed 1996. Male 57yo. Keep up the good work sir!
@mattycruz8 ай бұрын
Fascinating insight per usual Dr. Beaber. Thank you for everything you do for the MS community.
@kr33p08 ай бұрын
Perfect timing for this vid. My Ocrevus was delayed 4 weeks ago, so 7 months since a last dose, as my bcells were too low and next week I will follow up with my doctor and a decision will be made as to how soon the next infusion should take place. I can say I seem to have increased tingling in my leg but not serious yet. Overall 3 years on Ocrevus and no relapses since I switched to it so I would be happy to continue.
@Jerusalem_Warrior8 ай бұрын
So how do you explain the phenomenon known as Crap Gap, and what would you recommend doing about it? 😨
@janeca1026 күн бұрын
Hi Doctor! It is great to hear about this topic! So important to talk about it! It sounds safe the longer interval and surely it needs to be considered. Your approach to get people to talk about their experience is also great!
@RonaldBeirouti8 ай бұрын
Very interesting video and research! I have been on Ocrevus for 6 years now. When I started, my doctor suggested I would skip a dose every two or three years to "give my immune system a break". He had some insider knowledge ;-). So after three years, I skipped a dose. Things went fine until about 9 months after my previous dose, I had what some call the "crap gap", that is symptoms started appearing such as numb and tingling legs, increased fatigue, etc. I called my doctor and we resumed infusions quickly. Then, a blood test showed my CD19/CD20 were coming back, they were at 2% -- they had been at zero since starting Ocrevus. After my infusion, symptoms disapeared quickly. My doctor told me we would stick with the regular 6 months intervals from now on. What I wonder is whether those B cells that came back have any benefit on my immune system response to infections. My igM antibodies are still low.
@tricialarson75698 ай бұрын
Great video, thank you. I had my first full dose in December. A few weeks prior to receiving it, I would say that I was in the crap gap. Much better now that I've received my dose. I will see my doctor in a couple months to verify my progress. No complaints from me.
@barbm12318 ай бұрын
Thank you, 65yrs old, 2yrs Kesimpta, SID, stable 2yrs, was planning to ask about extended dosing
@bg00138 ай бұрын
Big O Sid, no infections etc, was worried when my neuro changed and wanted to extend dosing to 9 month intervals. Changed clinics back to old neuro to stay on Sid. I’m happy with where I’m at on the standard interval so didn’t wait change, but your video is food for thought. Thanks
@DrBrandonBeaber8 ай бұрын
One viable strategy is to simply check immunoglobin levels prior to each dose. There is a lot of variability in the recommendations individual providers give.
@bemoniri8 ай бұрын
I think not much can be inferred from this observational study. No matching etc. has been performed and one can think of many confounders that can cause the observed trends.
@timothycarter92088 ай бұрын
Hmmm. Well, thanks for the video. My wife developed all kinds of new symptoms after starting Ocrevus. The clinic said there were no new lesions, so the medication is working!! Well, I suspect as the patient gets older it may be more about brain density volume than lesions. As you are well aware other medications are more effective in protecting brain density volume than Ocrevus. This could be a topic for a video : with older patients who have had MS more than 20 years, which needs more attention counting lesions or protecting brain volume. Which medications could harm brain density volume and also which MS medications used for lengthy periods could increase risk for dementia and/or Alzheimer’s?? I wish my wife could come see you doc. Her neurologist here in GA refuses to check immunoglobulin levels and my wife is having more frequent UTIs as of late. My opinion is that DMTS are most effective early in the disease and now that she has had MS for over 25 years I wish conventional medicine would stop attacking her body and let her focus on diet/lifestyle improvements. So Ocrevus is a biological medication made with 5% mouse. Does modern science and medicine really feel that’s safe long term? How does that effect patient’s own DNA?? Thanks. Best of luck everyone
@SueBabe8 ай бұрын
Thank you for your videos, I’m a pharmacist but this is really helpful, great information ❤️
@DrBrandonBeaber8 ай бұрын
Thanks
@RubenBonillaPortilla5 ай бұрын
Amazing, I just received my first Ocrevus infusion three days ago. I had Rituximab before, but my physician ordered this new treatment. Now according to this doc it's very effective...
@EH_8883 ай бұрын
How did it go? I’m considering the treatment.
@RubenBonillaPortilla3 ай бұрын
@@EH_888 Really good, but keep in mind effects may vary from patient to patient.
@gratianbociort55518 ай бұрын
Thank you Dr. Beaber.
@4inrev8 ай бұрын
I have experience with drug Ksimpta for two or more years, but I don't have any infections or relapses. I took it once a month
@stonz428 ай бұрын
Thanks for the info Dr B. I’ve been wondering about this since I switched to ocrevus from extended interval tysabri (6 weeks) almost 2 years ago due to JCV. I’m currently on SID and doing well. No infections or infusion reactions and no active lesions or disability worsening. I’m hoping BTK inhibitors show similar safety and efficacy so I can make the switch for long term treatment. Does Kesimta lower B cell counts less than ocrevus since it’s a lower dose given more frequently? Curious to know if it’s less suppressive long term on SID.
@DrBrandonBeaber8 ай бұрын
In theory, kesimpta is essentially dosed lower than ocrevus because there was a specific dose-finding study on kesimpta in the phase II trial where they chose the minimal dose which would suppress gadolinium enhancing lesions. However, in practice I suspect many people taking kesimpta monthly will have continuous b-cell depletion.
@faisal9008 ай бұрын
I have RRMS and I've been on SID ocrevus since diagnosis (3 years now). On the last check-up with my neuro, he mentioned something about stopping the ocrevus, but we didn't discuss this in depth yet. Would discuss this next year. However, I already know what I will suggest. For me, stopping Ocrevus or switching meds is a no go. As I've been pretty stable on the O, both on MRI and clinical. Going for an EID is somehow fair, and understandable. I would like to give it a try, I guess. To get the course each 9 months instead of 6 months. I'm wondering if my neuro would agree on that one
@DrBrandonBeaber8 ай бұрын
Best of luck to you either way.
@faisal9008 ай бұрын
@@DrBrandonBeaber Thank you, sir!
@Superiuzzy8 ай бұрын
I took ocrevus for a couple of years ( with standard dose ) and now i am using Kesimpta from 8 mounths. I feel great and i had very few infections ( maybe less than other people without ms ). I Hope to continue likes this in the future waiting for btk new drugs :)
@ichabod138 ай бұрын
I do the standard Ocrevus every 6 months for many years now but I did have a couple infusions that were delayed a couple months waiting on insurance and pharmacy issues. I do not really experience any form of 'crap gap' I am about 2 weeks out now from my next infusion and feel no different. I do not really notice an increased infection or illnesses while on Ocrevus too, but I did get covid twice and nobody else in my family got it...and we all had 4 vaccines/boosters by that time. 🙃
@ekaterinagalkina33358 ай бұрын
Thanks for the video. SID for me at the moment. Unfortunately I do not have access to b cell level tests, but no MRI activity for last two years, a bit more minor infections and started noticing progressing weakness on "bad" side in last year. I'm upset at times because of that, but I'd say thankful to have access to Ocrevus at all and can work and exercises for now.
@DrBrandonBeaber8 ай бұрын
My personal opinion is that immunoglobin levels are more important than b-cell counts. It is common for people taking these drugs to have undetectable (or nearly undetectable) b-cells even 6 months or more after a dose.
@MicheleHChadwick8 ай бұрын
Thank you for this. I have bèn on O since being in the Ophra study. I am having problems with infections more now, and as soon as the extended study is finished next year, I will have my neurologist switch me to extended interval dosing
@belmakanlic11138 ай бұрын
Thank you for the great video and all links you posted! Unfortunately, giving Ocrevus every 12 months is considered off-label, thus you can’t get this arrangement in Bosnia 😔
@teakara7 ай бұрын
Pozdrav ✨🦋 i ja bih viljela jednom godisnje jer stvarno imam dosta nus pojava ali mog doktora nije briga. Pozdrav iz Mostara
@belmakanlic11137 ай бұрын
@@teakara zao mi je,nazalost tako nam je,tu smo gdje smo :-( iz mog iskustva,kad bi mu dosla s nalazom iz Hr/Slo/Austrije, drugacije bi te gledao,i onda bi mogli pokusati naci neko rjesenje. Barem preci na neki drugi lijek,nije Ocrevus sveto slovo
@teakara7 ай бұрын
@@belmakanlic1113 upravo take draga Belma, I moje iskustvo je identicno Vasem. Poslala sam Vam zahtjev za prijateljstvo na FB . Necu u vam dosadjivati niti prenositi losu energiju jer sama to mrzim. Samo bih voljela da znam nekog ko je na okrevusu kod nas. Pozz za Seher ❤ vama zelim dobar dan
@teakara7 ай бұрын
@@belmakanlic1113 apsolutno se slazem s vama, i ja imam isti dojam. Moje nus pojave su teske za podnijeti, psihicki, vidjet cu koliko cu moci izdrzati. Poslala sam vam zahtjev za prijateljstvo na FB. Apsolutno vam necu dosadjivati niti vam pisati svoje ‘zalopojke’ jer ja to ne volim nego jednostavno da ‘znam nekog ko je na istom medikamentu kod nas’. A i da vam nesto nekad posaljem sto vam moze koristiti. Bilo bi mi drago da me prihvatite za prijateljicu. Zelim vam ugodan dan ✨🦋
@lauracarlson92608 ай бұрын
Thanks for looking at this from a scientific angle. It is interesting that the delayed infusion is supported by reviewing the b-cell recovery. I know that is what Dr Boster thought early on in Ocrevus trials but when a patient had a major relapse that left the person with lifelong impact he decided not to push the advice of the label. The label says infusions are to be given every 5 to 6 months. As a person on Ocrevus I do fine with 6 month dosing but know many do not. While neurologists seem to dismiss the concept of "crap gap" it is very real. Many of them have pushed for a 5 month interval and do much better with this schedule. For those that don't, or haven't managed to change their schedule from every 6 months they have moved over to Kesimpta. As a follow-up video it would be great for you study them and determine why this happens. What is different for those thatt need the infusion every 5 months? There was a concept that people with a higher BMI or just plain larger people need a higher dose and there is some logic to that but many of the people that experience "Crap Gap" are quite petite. I am following Dr Boster's advice in one of his videos (Deescalate treatment during a global pandemic) that noted that if a person has had stable MRIs for a period of time and is approaching 60 (when their natural immunity wanes) it may be best to change from a B cell depleter to a couple of other options- one of them being Aubagio. Aubagio is also better at preventing accelerated brain volume loss. That is where I find myself. Stable MRIs for my tenure on Ocrevus (5 years), 59 years old with the most recent MRI showing brain volume loss and demonstrated cognitive decline.
@DrBrandonBeaber8 ай бұрын
I think the experience of a "crap gap" is highly variable and many people take these drugs much less often (such as once a year) and do well. Unfortunately we do not have any evidence on aubagio in older people with MS, so it is hard to know objectively if it is effective.
@colleensmith33748 ай бұрын
Hello Dr Beaber- how is brain volume loss tested?
@waterlp158 ай бұрын
Dr, Do you recommend to start Ocrevus?? I'm 40 years old mom with 2 kids and was diagnosed last February, tried Kesimpta and Zopesia, and had Severe side effects with both, and now they recommend Ocrevus!
@DrBrandonBeaber8 ай бұрын
I can't give you personal advice. Best of luck to you either way.
@taracostanzo51988 ай бұрын
Very fascinating - thank you so much for what you do
@DrBrandonBeaber8 ай бұрын
no problem
@fitzpatrickdunmanih8 ай бұрын
I am on Ocrevus for last three years with no issues(SID) in your opinion do you think it is more like an immune reconstitution therapy if the B cells that come back are different?
@Wyomi8 ай бұрын
I have always thought that the medication was over prescribed, both in frequency and quantity. My neurologist consented to me waiting until my B cells re-populated before having my last infusion, I went ten months. Once Bs were above zero, he felt quite impelled to hurry with the infusion, now I think I will be less quick to make the appointment. I also am considering asking about receiving a half dose.
@lesliex78948 ай бұрын
SID, 61F, RRMS, no progression, not prone to infections. Will discuss on next neuro visit,
@PavelProuzaCZ8 ай бұрын
I take Ocrevus and have been on a 5,5 month interval since with the standard 6 month period, I experienced the "crap gap" or waning efficiency very, very strongly with weakening of the limbs and extreme fatigue in the 2-3 weeks leading up to the infusion. I have shifted to 5,5 months after my first year and have been absolutely fine ever since. So skipping a dose? That's a very solid no from me.
@pgalinis8 ай бұрын
Same experience here. I get Ocrevus every 24 weeks (just short of 6 months). I experience the crap gap about 4-6 weeks before my next infusion. About a year ago, I started a routine where I get a steroid infusion @ 4 wks and @ 2 wks prior to my Ocrevus infusion. It seems to help buffer my symptoms. Skipping a dose? No way. If anything, I'd like to get it every 4 months!
@jpop997 ай бұрын
Doing ocrevus for the first time this morning 🙏
@hackett11818 ай бұрын
Informative video! Thanks
@1nsanetr8 ай бұрын
Great video, thank you Dr. Beaber.
@DrBrandonBeaber8 ай бұрын
Thanks
@josephvered39918 ай бұрын
Hi from Israel interesting video it shows that is very important to have an openend mind doctor like you happy new year dear doctor to you and your family
@FreshSpirit104 ай бұрын
Suggestion discuss on cognitive fog.
@amomaba57637 ай бұрын
Hi Dr. Many thanks for your videos. I learned alot from your videos. I have a question, do you have patients who changed the therapy from Tsyabri to Ocrevus being JCV positive? And if they did better after the switch?
@relentlessdj8 ай бұрын
How do you feel about Ocrevus infusion for patients with Nueromyelitis Optica Aqua 4 negative diagnosis?
@ahmeterwinog62958 ай бұрын
Hi Dr. Beaber! Thanks for this video! It was very useful as I had my first dose of Ocrevus at the end of last year after being diagnosed with RRMS. I will have my next dosis in June. I have a question if I may ask: I got on my spinal tap results 6 OCB, but none on serum. What is the prognosis? Thank you kindly.
@ernietollar4078 ай бұрын
I did have Rituxan Sept 2023 at the finale of HSCT.. I HAVE A QUESTION: How could my recent CBC have been ALL NORMAL NUMBERS a mere 3 1/2 months post HSCT Cyclophosphimide/Rituxan?! I guess having normal neutrophil levels doesn't mean B cells are not still depleted ?!
@rogercookcouk8 ай бұрын
Very informative video Doc. Thank you. I have only had my 1st 2-week doses after Tysabri for 13.5 years had my titre score up somewhat. So far so good 👍 next infusion due in June. I'm interested in the chart showing Ocrevus with Rebif. That was my 1st ever DMD, and after 20mg then 40mg with relapes aplenty (2006-8) it was thankfully stopped. Yet, aforementioned chart suggests that there is a positive similarity between the 2?
@DrBrandonBeaber8 ай бұрын
The OPERA I/II trials (ocrevus vs. rebif in relapsing MS) suggest that Ocrevus is more effective.
@rogercookcouk8 ай бұрын
@@DrBrandonBeaber thank you for replying. For myself, Rebif didn't do anything of not at all, but I was deep in denial depression then too. Ocrevus so far has carried on the Tysabri goodness.
@dearbhlar66818 ай бұрын
@@rogercookcouk I have been on tysabri for 6 months. How did you find it? Did you have any relapses/progression when you were on it?
@rogercookcouk8 ай бұрын
@@dearbhlar6681 Tysabri quite "made me a new man". Something I said about the magic juice many a time! Loved it. No relapses were has during my 13.5 year relationship with it
@fernandoalmeida63958 ай бұрын
Good night Dr. My name is Fernando and I'm from Brazil. I will start treatment for multiple sclerosis with Rituximab. I watched several of your videos. I would like to know if there is a recent article regarding the ideal initial dosage for treatment (500 or 1000mg every 6m) TKS!
@PriteeShourie5 ай бұрын
Which one is better forPPMS,Retuximab orOcrelizumab
@DrBrandonBeaber5 ай бұрын
Commentary on this controversial topic here: kzbin.info/www/bejne/qZXRZ3abqL6EpKc
@demoskunk8 ай бұрын
Those of us with PPMS won't really have anything useful until NVG-291, Lucid MS, and BTKi are aproved. Everything else is just a less than impressive bandaid.
@differentmarina8 ай бұрын
What are these (NVG-291 etc.)?
@ansi12148 ай бұрын
Dear Dr. Beaber, Great Video, thank you! Do you think Mavenclad has better safty Profile Long therm ?
@DrBrandonBeaber8 ай бұрын
I think in the short run it is probably more deleterious than ocrevus, but if mavenclad is stopped after 2 years and ocrevus is continued long term, it might be a different story.
@ansi12148 ай бұрын
Thank you for this Great answer ! I unterstand. For which Type of Patient do you think it Make Sense to Play this Poker Game And which Type of Patient should start with b cell Therapie from the beginning ?
@mccflo998 ай бұрын
My neurologist mentioned doing 300mg eveey 6 months instead of 600mg. Have you done any videos on this or do you know if it has been studied?
@DrBrandonBeaber8 ай бұрын
I am not personally aware of observational studies looking at ocrevus 300mg IV every 6 months, though certainly this could have a similar effect to extended interval dosing.
@jonm45018 ай бұрын
I'm older, do the std dosing, just completed dose 6 (yr 3) today. i'm 64, male EDSS 6.5 and I am higher BMI and borderline untreated diabetic (A1c: 6.5). I have not had any serious infections on this, expect COVID 2 years ago, and it was mild expect 1 day where I had a fever which pretty much paralyzed me, could not stand up. I get my IGs checked and so far I am good there. I do wonder if its worth it. I do feel a slight gain in my disability, was 6.0 EDSS when I started and am now 6.5
@dragonfire37277 ай бұрын
How much time did you have ms it could be that you transitioned to secondary progressive ms
@jonm45017 ай бұрын
@@dragonfire3727 Was DX'd about 17 years ago. I probably am SP, but with all the drugs I have been on (Avonex, Copaxone, Tysabri, Techfidera, Aubagio, Maysent and now Ocrevus) its hard to tell and its hard to gauge whether the inflammatory part is over. AND with Ocrevus it claims to have a mild slow down of disability progression.
@kevinwwfg8 ай бұрын
Is it bad to start Ocrevus if you already have hypogammaglobulinemia?
@DrBrandonBeaber8 ай бұрын
The risk of infection may be increased. This is particularly true for immunoglobin G which is most strongly correlated with infection. You would have to speak with your own provider.
@brankaboko72488 ай бұрын
What is your opinion about Taking ocrevus If I have high M protein and ppms?
@DrBrandonBeaber8 ай бұрын
I think you are referring to the M protein spike seen in immunofixation testing (monoclonal gammopathy) which to my knowledge has no specific link to MS or Ocrevus.
@brankaboko72488 ай бұрын
@@DrBrandonBeaber yes that is True but I don't know what medicine is good for me neither mine neurologist is not sure
@rainbowkenz8 ай бұрын
I mean, the personalized dosing changes everything, so I'm not sure why you were using "causative" language. Like, "Does delaying ocrevus cause more lesions?" Rather, it seems a lot more likely that the folks with fewer lesions on extended dosing have both those things correlated due to the same basic cause, their B Cells came back slower, causing both fewer lesions and an extended interval dosing schedule.