Risk of B-Cell Depleters Long-Term (Ocrevus, Rituximab, Kesimpta, Briumvi)

Thank you for making this! I was diagnosed with MS at 23 (27 now) and put on Ocrevus. I have wondered if I’m going to be on this drug for 20+ years what the long term effects will be. I don’t think we have the answers yet, but I’m glad someone is talking about it!

I was diagnosed with RRMS in Jan 2021. I started taking Kesimpta in Nov last year, one shot every month. I got an upper respiratory infection two weeks ago that is still lingering and skipped April's injection to recover. I'm seriously considering stopping the treatment if I am already getting infections. I am looking at the stem cell therapy. I only see my neurologist once a year and he doesn't discuss much with me for alternatives or how I'm feeling. I watch your channel to help myself. I'm Canadian and there aren't many resources for us here with respect yo MS education so thank you.

Thank you for this information. I’m 61. Had ppms for 8 years. Put on ocrevus 3 years ago and don’t really know if it is doing anything as continue a steady decline. No colds or infections . Avoid sugar and gluten. Pray for a better treatment for this wicked disease

Thank you for making this!! Questions I have for you: 1. what tests do you ask for to test for Immunoglobulin levels 2. what tests do you ask for to test for Plasma levels 3. what's the average half life of plasma cells? and how long do they typically stay in your system for? 4. When should you get a vaccine during your 6 month gap of infusions? 5. How long does it take for B Cells to turn into Plasma? 6. Is there a way to encourage B Cells to turn into Plasma? 7. how do you increase your Immunoglobulin levels naturally? Can you only do this when you have B Cells? 8. How do you increase the half life of your plasma cells? 9. How do you increase the half life of your Immunoglobulin? 10. Does the myelin sheath have antigens? 11. Is there a way of modifying the myelin sheath’s antigens so the immune system doesn’t attack it? 12. Are the B-Cells the ones that attack the myelin sheath? If not then what’s the connection between the B-Cells and the white blood cells that do attack the myelin sheath?

Whelp, this conundrum will keep me up all night! But not entirely in a bad way. We have to be fully informed when taking these and it's too easy to fall into the fantasy presented by the drug companies. Thank you for bringing it back down to earth! ❤ I am happy with Kesimpta so far though. No crap gap. No ill effects. I will be very mindful of my IgG moving forward.

Such an amazingly detailed video. Thank you so much for all your videos Dr. Beaber! I feel so much more informed about MS than I ever did prior to watching your content.

I am KP patient on Rituxin. I have been on it since 2019. I was getting it every 6 months. This past Christmas I was due for my next dose and I caught Covid. This pushed me back. I went 9 months between infusions. No new symptoms or lesions were noted. After speaking with my provider we decided to see how I do stretching out my infusions to once a year. I have been concerned about how my body is going to react after years and years of being on this medication even though I know it is preventing new lesions. Thank you so much for this video Dr. Beaber.

I’m 31 now, diagnosed at 26. RRMS but it’s been much worse these past 12 months. All I do is sleep. I had Ocrevus part 1a and b in February this year and as I write this, am deep into the aptly named “crap gap.” I am due infusion number 2 in a 2 to 3 weeks and everything I’ve seen on here before this video, says “try to get you infusions closer together.” It’s refreshing to hear this information/standpoint,especially from someone of your experience and profession. I’m just so exhausted all the time. It’s been miserable. Still, I knew it’d be a long road to any positive results.

Great video Dr. B! This aligns with my current thinking and my experience with Ocrevus. I’m now 65 and was on Ocrevus for 5 years 12/2016-12/2021. I wish my neuro had been as proactive as you about hypogammaglobulinemia, I started getting weird infections during year 4 of Ocrevus as my immunoglobulins steadily declined. I was worried about the infections so asked my neuro for IVIG treatments and she said it was too risky. Then last year I got very ill from severe rare infections that didn’t respond to IV antibiotics. I was hospitalized and required surgery as a result. It was a nightmare. Despite no Ocrevus since 12/21, my immunoglobulins have not improved. I think my age and immunosenescence played a role. I’d like to see you address aging in MS, aging immune systems and DMT’s in a future video if you haven’t done so already.

Thanks Dr. Beaber. I appreciate you explaining how the B-cell depletes work and the long term concerns.

I have secondary progressive MS. I was on Ocrevus for 2 years and had significant progression, switched to Kesimpta. I had 1 flare in May 2023 which caused a fever that was treated inpatient with high dose antibiotics while all tests for infection came back negative. However, those high dose antibiotics caused C-Dif, took oral vanco, finished the tapering dose, and it immediately came back with a vengeance really affecting my MS progression. I was off the kesimpta for 3 months, I am a nurse and knew trying to get rid of CDif with a compromised immune system, despite antibiotics would be difficult. I have a lot of lesions, when I was first diagnosed in 2012 I had a lot of lesions in my brain and spinal chord.

I have been on ocrevus since 2019. I have RRMS — I used to receive it every 26 weeks but for a year now have been receiving it every 24 weeks due to “crap gap.” I do not have any issues or note any crap gap with the two week difference. I have had no infections while using the med. I love this video because I do wonder the long term effects & I know not much research has been done in long term effects so super glad you are talking about it!

Glad a found you. Still dealing with the diagnosis

Just the video I needed! Unfortunately, my doctor never had me check IG levels, and I've been on ocrevus since 2019. I had really bad covid pneumonia,despite being vaccinated. I checked my IG levels, and of course they are low. I will have to ask my dr to prolong the time between infusions to 12 months... Glad that I'm not the only one with these issues

Your videos are meaningful in that you are not a schill to these companies. Thanks Dr. Beaber.

Great video, thanks for your work.

Thank you as always, your information is amazing

Thanks Dr. B! I've been curious about this topic since I switched to Ocrevus about 8 months ago. I was on 6 week interval Tysabri for about 5 months before becoming JC+ and did not experience much of a "crap gap" before the next infusion. However, I did experience an increase in fatigue and minor vision problems before my first full 600mg dose of Ocrevus in March. I'm hoping that I experience less of those symptoms before my next dose in September. I'm also looking forward to the shorter infusion time. I'm happy to report that I haven't had any illnesses, not even a cold, since I began taking Ocrevus. My wife had 2 bad colds this winter, but I never got sick. I had covid twice before starting Ocrevus and my neuro told me not to get any vaccines while taking it since they're not very effective. My hope for the longer term is making the switch to a BTK inhibitor, pending safety and efficacy.

I've been taking Ocrevus for about five years. Diagnosed 2015 with rrms but soon learned it was ppms. I do experience the "crap gap". I was delayed in getting my infusion during the pandemic due to covid infection, about 8 months gap. Thank you for this.

When I started Kesimpta, my team of doctors told me to get my immunoglobin levels checked every three months. I've been taking it monthly for a little less than two years and so far I haven't had any issues. I hope it stays that way because after three years my previous medication, Gilenya, stopped working for me (CFS, pain, monthly flare-ups, ...).