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

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Is it safe to take B-cell depleting medications for multiple sclerosis such as Ocrevus, Rituximab, Kesimpta, and Briumvi continuously for many years? In this video, I explain the immune system can become weaker over time with continuous use, and low immunoglobin (antibody) levels can result in serious infections.
Notes:
Is rituximab 500mg just as good as rituximab 1000mg for MS? This deescalation study suggests that decreasing the dose to 500mg does not affect clinical, MRI, or serum NfL results over a 12 month period and may be safer. pubmed.ncbi.nl...
Do you really need Ocrevus every 6 months? This study in Italy during the pandemic found that "extended interval dosing" was linked to more MRI activity but not disability progression or NEDA-3. pubmed.ncbi.nl...
What happens if you delay Ocrevus due to fear of covid? Nothing! This retrospective study suggests that extended interval dosing compared to standard dosing did not significantly change relapses, disability progression, MRI activity. pubmed.ncbi.nl...
An extended dosing interval for rituximab for patients with stable MS during the COVID-19 pandemic may be associated with a low risk of disease activity. nn.neurology.o...
Living life without B cells: is repeated B-cell depletion a safe and effective long-term treatment plan for rheumatoid arthritis? www.ncbi.nlm.n...
Comment or ask questions below! I would be happy to answer!
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Check out my book “Resilience in the Face of Multiple Sclerosis” FREE on Amazon: amazon.com/dp/... It's about 5 people with MS who live incredible lives, the science and psychology of resilience, mindfulness, and ho’oponopono. Paperback priced to generate $0 royalty.
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.

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30 сен 2024

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Комментарии : 409

@lindseyhoffman9293 Год назад

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!

@lindseyhoffman9293 Год назад

And to answer your questions, I have noticed the crap gap but have been much more concerned about PIRA and feeling like my condition has worsened without any evidence of having had a relapse. I have had COVID 3 times since taking Ocrevus. I have not tried spacing out dosing at all, if I’m being honest that makes me nervous but may be something to look into down the line.

@DrBrandonBeaber Год назад

I unfortunately don't have a simple solution to the "crap gap" vs. risk of long-term b-cell depletion. It may simply be a trade-off intrinsic to this class of medications.

@barbaradascalos4411 Год назад

Matt Embry has not had ms long enough...he could get spms at any year...

@juliegould9383 Год назад

Very interesting. I've decided to stop Ocrevus because I'm 63 & caught Covid in hospital having second half of my first Ocrevus dose. Blood tests show I have zero Covid antibodies, despite 5 vaccines, Covid infection & antibody infusion in hospital. The risk of severe Covid is too great, so I'm switching to Mavenclad. That way, my immune system comes back much quicker. Hopefully, younger patients can switch to Tysabri or Mavenclad if they start to experience repeated infections. It's a shame, as it works so well to control MS attacks.

@JennyBrie2006 Год назад

@@barbaradascalos4411 he's around 40 and was dx at 25, so I don't know what not long enough means, especially as men are usually worse as far as progression. But he does seem to not have symptoms, so perhaps his diet works well to keep down inflammation 🤷

@rollin-92992 Год назад

These drugs are time-buyers, I don't expect to take it for 20 years. There will be new generations of safer and more effective drugs, no doubts.

@kaciec2863 Год назад

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.

@imblessed8986 Год назад

I pray that everything gets better for you. Have read or researched, Dr. Terry Walsh or Bob Cafaro and how they cured their MS?

@kaciec2863 Год назад

@@imblessed8986 Thank you. I only read info from respected MS specialists and proven science. Dr. Wahls has been less than forthcoming about all of her treatment and tends to promote just the diet as a holy grail. Haven’t heard of Mr. Cafero. Other than the damage to my immune system from Ocrevus, I’m actually quite healthy. I am a normal weight, eat a healthy diet that works for me and exercise. I appreciate the suggestions though!

@steph5260 Год назад

This is precisely why I want to ask my neurologist about long term use I am in year 3 and been concerned about long terms use hope your health improves and pray we all have a new and improved treatment soon ! A cure would be better but not sure in our lifetime! I find eating healthy staying active with the treatment work best for me also ! Prayers to you

@kaciec2863 Год назад

@@steph5260 Sorry for the delayed reply. You are being wise to consider long term effects. Hopefully your neuro will be proactive about monitoring your immune system unlike mine. I dint want anyone to go through t what I did.

@smmcb647 11 месяцев назад

@@imblessed8986 Well I do pray that God will give you insight that whilst good diet helps it is not a miracle cure for MS. When I was diagnosed 2 years ago well meaning people sent me similar advice. I assure you, it was not helpful.

@timothycarter9208 Год назад

So, in summary Ocrevus is not safe for long term use due to the depletion of plasma cells? My wife started Ocrevus in 2019, and soon after I witnessed her having increased weakness in her legs as well as some new symptoms such as trouble getting her clothes comfortable and increased sweating and exasperation while being physically active. I asked her neurologist about long term use of Ocrevus and she stated something else would come along that would be better. When told of some new symptoms my wife was having, I was reminded that it takes a while for the medication to be effective and furthermore, it would not result in any improvements, but would simply slow progression. We both contracted Covid and thank the Lord we recovered with only mild symptoms in a few days. She was eager to get vaccinated for Covid mostly so she could no longer be required to wear a mask at work. She had an Ocrevus infusion in April, and was encouraged by her neuro to get vaccinated 7 weeks later in late May. After the first shot she contracted strep throat for the first time and it was worse than her Covid symptoms. After her second shot she suddenly had bursitis of the hip and was unable to return to work. She is now mostly bedridden and has severe hand contractures. I have accompanied her to the doctor for ten years, but have not once seen any MRI imaging. Although the last visit they said “no new lesions, so it must be working!” I wonder when the last time there was new lesions in her 25+ years of living with MS? And isn’t there so many other factors such as spinal fluid volume, brain atrophy, etc. that effect disability? She has an appointment next month and yet another Ocrevus infusion (approaching 4 yrs now). I have spoken to the makers of the drug (Genentech, owned by the Roche corporation) about some concerns, and they seem to feel like it is fine to continue treatment. FYI: I have searched far and wide and the only pathway I have seen to obtain gain of function with neurological injury is exercise (maybe combined with e-stim). Thoughts? Video idea: review the new bionic Neurosleeves for arms and legs. Although I think you have to be mobile at least somewhat for those to help. Prayers are appreciated and I wish everyone health and wellness!

@rosieposie9564 6 месяцев назад

I think your wife should switch to something else.

@user-zxdfhvj46jfjk 3 месяца назад

I SAW a documentary..where explains that...Ms can be created by viruses and bacteria..but mostly one virus ebv....covid infection ...or vaccination....activates that ebv....and u get Ms flare bad...and...with no remission or stop...with all the Ms drugs...covid destroys mitocondria..ebv activates and cannot be killed...u die...from Ms. I am in exact situation. I cannot control my sphincters...I cannot shit... I wi die soon. good luck.

@stevecorinthian 3 месяца назад

@@rosieposie9564 and why do you say that?

@rosieposie9564 3 месяца назад

@@stevecorinthian Because it is obvious from what he has posted that his wife is sharply declining rather than being stable or getting better on the particular drug she is on. No point continuing with something that is clearly not working.

@TheCdM1981 29 дней назад

It’s theory. His theory. Speak directly to your wife’s neurologist.

@urthchick Год назад

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.

@merlelybird2726 Год назад

Hello, In Texas we have this thing called MyChart and we are able to see all our blood work and MRI’s. If I ever have an issue or question, I can send my MS specialist a message. In fact, I would imagine if I was in your situation, he would call me and ask for an update. I am sorry that you are dealing with health issues on top of everything of MS.

@acemusichistory3622 Год назад

Have to checked with Calgary ?

@danielmcinerney9949 11 месяцев назад

Well said did you ever decide to stop? I’m terrified to start treatment I don’t want to but I get less than great service from my doctors if I just don’t do what they say… they hate that I have questions. My thing is they will sleep good at night no matter what happens to me. My family n I on the other hand will have to deal with some difficult decisions obviously idk 🤷‍♂️ but thank you for your honesty in this serious topic

@LitPenguin713 10 месяцев назад

@@danielmcinerney9949yea it strange how the doctors don’t communicate well. I wonder if they don’t even know why they prescribe some medicines they know nothing about. Having MS and dealing with the medical industry has made me hate it.

@hmscareercoach 3 месяца назад

Just the first year I started it. I got three upper respiratory infections back to back.

@EvenSoItIsWell Год назад

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

@rutgers182 9 месяцев назад

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?

@jasonchouinard8082 7 месяцев назад

This comment needs some serious UPVOTING love. Thank you for your tremendous efforts and thoughts that will propel this topic forward if they can just get to the right minds.

@belmakanlic1113 6 месяцев назад

1. I always ask for "Immunoelectrophoresis of proteins" when I want to check my IG levels

@rutgers182 6 месяцев назад

@@belmakanlic1113 thank you!!

@kelebek2242 4 месяца назад

Diese Fragen sind wichtig. Wieso werden diese nicht beantwortet ? Why he not answering your questions?????

@MeltaiDeltai 3 месяца назад

From what I believe, its the T-cells that do the attacking. The B-cells direct the T-cells to do the attacking.

@exit33office48 Год назад

I take Kesimpta. Subcutaneous injection once a month. Been on it since December 21, had 3 covid vacations whilst taking it with no issues and as you said I haven't had as much as a cold since starting treatment. I get bloods done every 6 months but here in the UK the results aren't shared with patients unless there's something wrong so I've no idea what my immunoglobulin g levels are. I'd like more Kesimpta specific videos please as there aren't many about.

@mrdanjeremiah Год назад

You can definitely get your blood results. Ask your GP/MS nurses to email them to you. I'm treated at UCLH and they show up on an app the next day.

@christydavis6114 11 месяцев назад

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.

@shrum11 Год назад

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.

@MaryBrooks123 Год назад

You are with Kaiser? I wish you were my Neurologist. No one ever bothers to explain these things as you are doing in these videos. Thank you. I have become scared of attempting a DMT, but that's because my body is already full of herpes viruses, and I have had bad reactions, to pharmaceuticals, AND, the biggest thing, I can't afford these treatments. :(

@__Wanderer Год назад

Thank you Dr. Brandon, definitely information to consider. Would love to hear if tecfidera / vumerity also has long term impacts. Feels crazy to know I need these drugs for life :/

@DrBrandonBeaber Год назад

I think that tecfidera/vumerity would be lower risk in the long run in terms of infections as long as lymphocytes with tecfidera/vumerity are at reasonable levels.

@whoosh_angel Год назад

I was set to start on Kesimpta but had such reservations about this exact issue. My MS specialist neuro also stated that he would be “lying if I said I didn’t have concerns about cancer and serious infections with the anti-CD20 drugs.” Though he says they are more efficacious. He suggested Bafiertam as an alternative which is what I’m going with. It’s a newer fumarate that doesn’t need to be converted in the GI tract. Can you PLEASE do a video on this drug?? 🧡

@Chipvr127 Год назад

I do worry about the long-term effects of Ocrevus. I've been on Ocrevus since 2020 (tysabri previously from 2016-2020). I deal with crap gap and non-stop skin fungal infections. Will speak with my neuroteam about this video and my concerns.

@doloresvegabaja2530 2 месяца назад

I’ve had skin fungus since ocrevus

@hackett1181 Год назад

I read on the old Barts ms site that the B cells are also important in terms of preventing breast cancer. Given the high diagnosis of breast cancer in women, 1 in 7 it makes me wonder if taking these B cell medications are a little like Russian roulette for us?

@heathermarie8334 Год назад

I believe you are correct. I'm 36/f and have been on Ocrevus for 4 years. My neuro always mentions that breast cancer is a possibility w/ Ocrevus, and at my check-in appointment last week said he'd like to order a mammogram for me (instead of me waiting until the normal ~40 age when I'd otherwise start to get them) just to check and be safe. I'm happy being on Ocrevus as the benefits outweigh the risks (for me, personally!) and am grateful my Dr. is so proactive regarding the possibilities.

@lizross6933 Год назад

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.

@Jessica-rz7hs Год назад

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.

@ahmedfowad2122 Год назад

Thanks for the information. Many People using Ocrevus experience progression of weakness and their MRI not showing progression of MS. What is your opinion and experience regarding this. Thanks in anticipation

@barbaradascalos4411 Год назад

Yes..these DMT do not stop progression.. horrible hsct is not offered.

@ahmedfowad2122 Год назад

@@barbaradascalos4411 Yes you are right but you know HSCT carries risks. I think mesenchymal stem cells therapy is a better option...

@barbaradascalos4411 Год назад

Very low chance of death...almost zero.. Dr. Burt says he has stem cells but not proven in human trials..yet. see "ms gym Dr. Burt interview"

@throughchrist.icando Год назад

I hear you it happened to me I have walking issues now with NO progression on my MRIs after taking B cell depleting therapies

@lararose9106 Год назад

Dear ahmad i was diagnosed last year and not on dmts. Im not willing to take the risks but the drs. Are insisting that they work on symptoms and previous damage and i dont believe that. All they care about us no lesions on mri and refuse to treat relapses. Im currently having a disabling dizzy episode and there saying only a dmt can stop it.

@Py16777216 Год назад

I worry about the longterm effects of any drug taken indefinitely. So far I'm happy with Lemtrada before the second dose. More short term risk. More longterm rewards theoretically. I'm surprised that it isn't prescribed more often to young patients with mild disease rather than being prohibited by cost or because of insurance company greed.

@ernietollar407 3 месяца назад

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

@isfinannaire9877 11 месяцев назад

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, ...).

@samlatooni 24 дня назад

Me 2 , kisempta has been the only dmt since I got diagnosed.... I am worried that infections would arise 😢... I have no idea what to do. All DMT seem to be dangerous......I was diagnosed 2 years ago , my cd20 cells are zero!.... Good luck

@lolavth Год назад

I’m 28 years old, diagnosed 2 years ago at age 26, started Kesimpta as my first DMT in September 2021. I’ve loved being on it so far, it has been so easy and I’ve had zero side effects. I did get COVID around NYE 2021/2022 but it was exceptionally mild (i had 2 vaccines before I started Kesimpta, with the 2nd 6 months before I caught covid). I’ve had 2 head colds since then as well over the past year that I caught from my partner, nothing bad, just a runny/stuffed up nose for a few days. I am a little worried though since before getting COVID the last time I had been sick was 2016, but other than those colds and catching very mild omicron I haven’t had any infections at all since I’ve been on Kesimpta. I find that I’ve never been someone who gets any kind of infections or viruses, i.e. never had a UTI, maybe a cold sore once or twice in my whole life, didn’t get sick often. However it could also just be that I was never living and sharing a room with a partner before, so I probably had a lot less opportunity to get sick as well! I’m not worried for now but definitely something I will talk to my neurologist about in the future. I also want to start monitoring my IgG levels on my routine bloodwork

@matarazzo209 Год назад

I was diagnosed when I was 17 I'm 34 now and been on ocrevus 5 years i love it

@timothycarter9208 Год назад

Great Info Doc! Caregiver for my wife asking: so what does Ocrevus and the accompanying cocktail of meds (including solumedrol) do to the gut microbiome? Anyone thought to look into that? And furthermore, there are many more natural compounds such as berberine, colostrum, reishi mushrooms, and certain probiotics (not to mention dietary changes like keto and/or intermittent fasting) that ALSO regulate T cells and B cells, without as many risks, I might add, will there be a comparison study anytime soon, and are these antagonists at all to Ocrevus? Thank you so much! P.S. have you made a video yet about colostrum supplements for adults and MS? Seems the best source is goat’s milk. I would choose that over 5% mouse Ocrevus any day (that can’t be Kosher). Thanks!

@merlelybird2726 Год назад

Your wife is very lucky to have you ask all these awesome questions!

@roosholtzer9248 4 месяца назад

Thanks for making this video! It helps to stay sharp and do the right thing. I started kesimpta since februari 2024, i am 42 now. Have ms since 2005. Its my first medicine. I am doing well, i think because of diet and the medication. But my question is: when in future my igg levels would become low, how do you reduce the frequence of Kesimpta? Or would you stop taking the medicine? Do you have experience with this medicine in this situation? Thank you so much in advance, Roos

@andrewreisinger6860 Год назад

I've had MS for 30 years. My EDSS is 6.5. I took Betaseron for many years but switched to Ocrevus about 3 years ago. I do intermittent cathing. This video is concerning to me. I DO experience the crap gap, so I get the infusion every 5 months. Do you have patients that get immunoglobin infusions in addition to B cell depleters?

@kevinwwfg Год назад

I’m curious if he’ll respond to this. My neurologist and immunologist wanted me to have IVIG infusions while on Kesimpta (I have low immunoglobulins). I ended up not doing it because my insurance wouldn’t approve it.

@Jerusalem_Warrior Год назад

WHERE did you find insurance that approves you Ocravus every 5 months? 😮

@Wyomi Год назад

@@Jerusalem_Warrior If you read the label for Ocrevus, it actually says on there that it is 5 to 6 month interval.

@Jerusalem_Warrior Год назад

@@Wyomi Tell me about it! And the reason they gave for the refusal was 'lack of medical literature supporting' moving up the infusion. So I tried to cry, I KNOW English, it says on the label... 😫

@MeecheMeeche Год назад

This video addresses many questions I've been chewing on, thank you! In the past several years (I've been on Ocrevus since it was approved by the FDA, with a big gap during Covid), I've developed serious digestive issues... was chalking them up to low motility from MS or developing IBS, but when I finally mentioned the issues to my primary care doctor, she had me test for infections and I had very serious cases of SIBO and IMO that are still not fully resolved. Does seem to fit the time line of starting/ taking Ocrevus. Now wondering (with my MS neuro) if I need to go off. One thing I'm a bit concerned about is that we've been testing my immunoglobulins since the get go, and the IgG IgM and IgA all seem to take turns being very low, yet when I've asked about this, it was brushed off. I guess I need to advocate for more information and follow up. Again, many thanks!

@bartonlee3594 Год назад

Thank you for your analysis. I have been receiving 500ml of Rituximab every six months since 2017. I will ask my neurologist about the long-term risks you highlight the next time I meet her. I am 65 years old, originally diagnosed with RRMS in 2006.

@DrBrandonBeaber Год назад

Best of luck. I hope the video was helpful.

@dragonfire3727 7 месяцев назад

How are you in terms of disability? Can you walk without a cane?

@bartonlee3594 7 месяцев назад

@@dragonfire3727 I have spasticity in both legs and hips and walk with a cane. I take two muscle relaxants (Tizanidine and Ampyra) for easing symptoms.

@bartonlee3594 7 месяцев назад

@@dragonfire3727 I have spasticity in legs/hips, but I can walk with a cane.

@wamartin2013 Год назад

Can you do a video on the promise of using HIV meds as anti EBV therapy for MS? This case study caught me eye: www.ncbi.nlm.nih.gov/pmc/articles/PMC8166391/

@rosieposie9564 4 месяца назад

That research is really interesting and promising.

@laurietumer3216 Год назад

I've been on Kesimpta for about 1.4 years. I mostly deal with neuropathic pain syndromes and I do experience a "crap gap" between the monthly shots - worsening symptoms = more pain. I generally have more pain the last 6 months and it has migragrating faster. I can't tell if it's the K or pain meds. It's confusing. I'm 71 w/ last flare never resolving and putting me into a progression stage. You've given me a lot to think about and discuss with my neuro. Thank you.

@merlelybird2726 Год назад

Hello. Thank you for sharing this, I am 31 and just started Kesimpta in December 2022.

@byron2521 3 месяца назад

O.K. I'm 57, diagnosed at 55 with PPMS. Doctor set me up on Ocrevus. I declined! Told her I need a second opinion. Was not happy with her treatment, so not confident in her prescription of Ocrevus. Just stuck with her because I thought switching doctors might mess up my disability claim. Looking for new doctor for that 2nd opinion. Plus having PPMS, the best Ocrevus is going to do is maybe keep me out of a wheelchair in the next 5 to 10 years. The more I watch stuff like this I see no benefit for PPMS. So, still going to stay off everything for now.

@kareneiro11 Год назад

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.

@Link77793 2 месяца назад

Mickey and Goofy 🙃

@arthurmiller9103 Год назад

Awesome👍 Vlog on improving fine motor skills in MS patients would be awesome too Thank🙏 you

@tvdb6153 Год назад

Dr B....does Kesimpta result in less immunosuppressive effect because of it's once per month dosing....and it's less effects on immunoglobulins? Do the B cells repopulate each month causing less immune suppression?

@ilyesgueboul6175 Год назад

Hello have you ever found a response to that ? Thanks

@elizabethrash7370 Год назад

Thank you for this wonderful video. I am 64 years old, low body mass, I’ve had five doses of Ocrevus with the last dose approximately 2 1/2 years ago. My B cells are still below normal. My immunoglobulins have always been within normal range. I also have a minor decrease in my T cells. It’s my understanding that those should not be affected by Ocrevus. should I be considering some other ideology? Thank you.

@elizabethrash7370 Год назад

*etiology

@Wyomi 7 месяцев назад

Dr. Beaber, what are your thoughts on administering Ocrevus at half dose rather than a full dose? My first neurologist stated that he felt the medication was administered too often and more than what was needed was given. After my first half dose, all of my Bs were gone, so why would I need any more. Wouldn’t a half dose be enough each time?

@Wyomi Год назад

Thank you for this video topic, lots of questions that I have had are addressed in this discussion. Of course it also brings more questions up in my mind. I started Ocrevus as my first DMT in December 2020. I am currently looking at doing my next infusion which will be nine months after my previous one. My cells were just tested and the doctors office told me that they were still low, I don’t know if that means zero. After listening to this discussion, I am considering pushing my next infusion off even longer. My experience with Ocrevus has been uneventful, no crap gap either. I’ve taken the last two infusions without any of the premeds. Anytime I can avoid adding more drugs I am happy to do that. I have not had any serious infections, however I did have Covid twice, about three months apart. I had three full doses of the vaccine prior to both Covid infections. Having Covid wasn’t horrible, however I did take the antiviral medication. We will be analyzing my bloodwork once I receive that from my doctors office. Thank you for the information and all that you do.

@freethetomatoes Год назад

I’ve been on Kesimpta since the start of this year. I wonder how long I’ll be on it, should I switch to a different style of drug every few years, what are the long term effects, etc. There’s just so much uncertainty with MS.

@merlelybird2726 Год назад

There is so much uncertainty with MS and our treatments. I definitely feel like a pioneer though. I take part in studies to make me feel more secure in my ability in helping people in the future!

@wendysander8695 Год назад

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

@DrBrandonBeaber Год назад

Hopefully we will have better treatments for people with progression despite disease modifying therapies soon. BTK inhibitors may benefit people like you.

@blackprotaco Год назад

I caught Covid and I’m on Ocrevus. Hadn’t had any vaccine in over a year. Intense fever and fatigue set in so rapidly and went so high I thought I was gonna die. A month later I got my Ocrevus dose and blood work showed my IgG levels just below 700 (690) and IgM was 27 (low). I transferred over to Ocrevus from Campath trial after 11 years. I’d like to see some content on hereditary illness. My mother has been doing intense research on family tree and recently found my Father’s father and supposedly he had MS and died at 51. That was in 1963 long before medication and she also found out that a sister of my grandfather had a child that had MS.

@DrBrandonBeaber Год назад

Thanks for sharing. We're not seeing much severe covid-19 right now, but even if covid-19 does not lead to hospitalization, it can still be unpleasant and cause a multiple sclerosis pseudoexacerbation.

@justsayknow7632 Год назад

My mother had MS and so did her grandmother. The grandmother died at the age of 42 and my mother lived to be 77 years old. My mother suffered greatly due to the MS that she had and hid from me. I found out she had it after she had died as it was in medical records that had generated unpaid bills. So, I found out her big secret after she had died. Her symptoms were very similar to mine btw.

@blackprotaco Год назад

@@justsayknow7632 Hmm..interesting. Did knowing any of that help you get treatment early on? I'm just finding all this out now about my family but if I could of known earlier on it may have helped. I had odd occurrences about 10 years before (1992) more often come and go symptoms (2001) started. And then it took another 3 years (2004) to finally figure it out. My grandfather was in a wheelchair, so he probably suffered pretty bad. His sister's son supposedly didn't have as bad an illness. I hope your doing ok

@justsayknow7632 Год назад

@@blackprotaco Hello mike_c, No it did not have an affect on my decision as to whether or not use these drugs. I'd made that choice when I was diagnosed. All they had at that time was Betaseron and I couldn't do it being I am needle phobic. I am holding up fairly well for someone my age (late 60's). I am not in a wheelchair and luckily the bouts of opitcal neuritis have stopped completely it seems and my eyes have healed on their own (!). I have never taken steroids for any reason. I was not particularly shocked to find out my late Mother's secret. Her case was not as extreme as mine has been however. She was able to keep working until she was 60 years old whereas I was disability retired from my job after the bouts of optical neuritis blinded me in 1996. For me recovery was not working a job any more. I had to stop, that was obvious. I hope you are hanging on best you can as that is all any of us can do. Take care mike_c and thanks for your message. 😼

@merlelybird2726 Год назад

Hello, wow! I am glad you are able to be more open about your MS. I am sorry to hear about your mother.

@belmakanlic1113 11 месяцев назад

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

@sarahjane0512 Год назад

Ocrevus patient since late 2018. I experience “crap gap” 4-6 weeks before my next infusion where my spasticity in my upper body starts to get worse and my chiropractor is unable to keep things in alignment because my body keeps pulling them back out of whack. Thanks for the video.

@ourbuddykevin 7 дней назад

Thank you for the information. I'm a long-time user of Rituximab (15+ yrs.) for NMO. I was having severe exacerbations almost yearly back in the early 2000's. There wasn't a lot of knowledge about NMO back in 2005. Luckily, I stumbled upon the Mayo Clinic and took one of their early antibody marker tests that led to a dx of NMO. and switched from MS meds to Rituximab therapy. No serious infections or complications from the treatment over the years. I do worry about the long-term risk but this drug has been what I feel a literal lifesaver for me.

@bushraalshammari4075 Месяц назад

I usually don't write comments, but I felt like sharing my experience might help someone. I'm 35 and was diagnosed with MS a few years ago. I receive Rituximab IV every six months, and I have felt much better since starting this medication. My initial symptom was a loss of sensation on the left side of my body, from head to toe. I also experienced constant tiredness. After starting Rituximab, my condition improved significantly, and I have not had any complications since the loss of sensation. My doctor mentioned that some patients could have trouble walking after this, but thankfully, that hasn't happened to me, and I've returned to my normal life. My doctor also warned that I might be more susceptible to infections after taking this medication. However, while my husband and kids get colds and respiratory infections every winter, I don't! I believe this is a blessing from God. I don't know what the future holds for me, but I am satisfied with what Allah's (God's) plan for me.

@jenadeen Месяц назад

Asalamu alaikum Bushra, I was diagnosed on June 21st 2024. My neurologist's fellow understudy presented me with: (over a zoom call): 1. KESIMPTA 2. OCREVUS 3. TYSABRI Despite my neurologists fellow understudy (training to be an MS specialist)practically choosing Kesimpta monthly injections for me, I chose Ocrevus a few days ago for it's convenience (every 6 months sounds better than monthly). I haven't had time to look up anything else. I live in Canada. I initially went into emergency room at the hospital with numbness in my left arm & leg & loss of balance. Lesions were found in my brain (pons) and spine (T11). Only Brain MRI was used to diagnose Demyelination. I now want to look up rutuximab.😮

@jenadeen Месяц назад

Looked up rituximab on MS Canada website infusions and did not find it. But when I searched rituximab IV I could only find that it was used for non-hodgskin lymphoma cancer patients (B cell inhibitor) and not approved for MS? Is this because it is less expensive???

@klinexXEst1997 Год назад

Why we focus only by stop duplication of b cell if we dont have specific evidence if b /t cells fault

@usmana5578 Год назад

Am part of a "study" for kisempta.... my doec says the usage will be "forever"...... have had 12 shots so far, one every month...and this time the doc talked about giving me some vaccine shots 🤔 💭 🤔 💭 am quite worried 😟 😨

@dleufven6308 Год назад

Thank you, Dr. Beaber. I have taken Ocrevus about seven years for PPMS (35 years). Ocrevus probably is slightly more effective than Copaxone or Tecfidera. Delaying a dose of Ocrevus by 3 to 6 months is not too noticeable, except for the loss of the two grams of Solumedrol. I cannot separate the effects of Ocrevus and Solumedrol, which has an immediate benefit. I read about a study showing that Ocrevus can be delayed until a small rise in B cells is detected by blood tests-usually at 10 months. Have you used that approach to Ocrevus dosing? I continue to wait for a more effective medicine. Do you think that prolonged use of B-cell depleters should be moderated so that they will not interfere with a slightly different, better medicine? For a future video, I will be interested in new medicine approaches, such as the CD3 nasal spray drug going into phase 1 trials this year. My understanding is that drug and other drugs may be more effective, but they work by suppressing T cells or by compromising the immune system more than B cell depleters. Thank you for making the videos that discuss real treatment decisions.

@CableGirl35 7 дней назад

What about rebounding? I remember reading a study that theorizes that the immature b-cells that are repleted tend to be hyperactive. I was late a few months with getting an infusion and had a faint lesion on an MRI. Seems like when the CD20 b-cells come back they are in fight-mode.

@JennyBrie2006 Год назад

I've never heard any doctor make suggestions on what causes the crap gap until you. I noticed nothing of it myself when i was on ocrevus, but i only had the 2 half doses and one full dose. I did experience an infusion reaction and increased spasticity while on it. I just couldn't see myself taking it for an extended period because i already have DDD and OA and i like having my skeleton intact, steroids are awful to that end.

@oohokay Месяц назад

Rituxan for 8.5 years so far. Going good still

@DrBrandonBeaber Месяц назад

Good to hear

@07broly Год назад

Ocrevus was my first DMT since my onset, in a clinical setting, was Ocrevus and as I declined so rapidly, I'm in the process of getting on Lemtrada.

@ekaterinagalkina3335 Год назад

Thanks for the video. I felt a bit upset at first, but such questions definitely should be raised, since when I was switched to Ocrevus in 2021 I had the impression of it as an aggressive miracle. My "bad" spastisity reduced significantly after Ocrevus and I'd say my crap-gap is getting blurred over time (I do have around a month-two in between infusion where I feel much better then normally). As for infections - started getting nasty cold sores on my gums every couple months and once in two years had something that probably was a flue (but had positive covid test two weeks later with no symptoms at the moment, got vaccinated twice). I don't have access to b-cell levels test (had one after initial double dose - all zeros). Would you say it makes sense to monitor Ig-s if b-cell levels are inaccessible?

@davidflewitt1671 Год назад

Thank you for making videos like this, can you maybe do a video of why Rituximab is not on label for MS? And I’ve already been concerned about long term use of ocrevus, I do seem to be getting more infectious but I don’t want to go onto something less effective for my MS

@RonaldBeirouti Год назад

Great video! My IgM have been in the ok range (varied between 9.3 and 10.5 g/L) for the last 5 years. I also have had very few infections during that period. Fewer than my colleagues at work. After three years on Ocrevus, my neurologist suggested I skip a dose for this exact reason. My levels were ok, but it was just a little drug break for my immune system. Unfortunately, after 7 or 8 months I started getting increased fatigue, pain, and we resumed the infusions. I gradually got back to "normal" 🙂. My CD20 levels have always been at 0 except the time I started feeling worse where they were at 2%, which I guess is low but higher than the flat zero they were for five years on Ocrevus. Now 5 years is not necessarily very long term. I'm wondering what would be my options if I get prone to infections. Do you think BTK inhibitors pose the same problem as B cell depleters since they still inhibit the B cells? Or would blocking the BTK channel not interfere with making new plasma cells and antibodies?

@DrBrandonBeaber Год назад

I suspect the risk of infections will be lower with BTK inhibitors, so this could be a potential option for people who are either having side effects from b-cell depleters or are otherwise too high risk due to age and comborbidities.

@HeatherSingh-m9l 13 дней назад

Hi, need this video right now. 7 years plus on Rituxan. Had a lot of infections 3 yrs in so advocated to lower dose to 500 then 250 mg. Then 250 worked well even though during covid I had no antibody response from any of the vaccines I was getting. Last two years my IGM was lowering so we stretched treatment out to once a year and now I’m having a fourth recurrent bacterial infection. Considering a switch to Tecfidera (my doc calls it a walk back as it may not offer as much protection?) video please on infections, long term B cell depletion, wanting to rebuild B cells and walk back to a less intense drug…options seem extremely limited. I’m 45, have ten more years at least of needed medicine coverage?

@HeatherSingh-m9l 13 дней назад

@dianefresca6896 Год назад

Glad a found you. Still dealing with the diagnosis

@deannasifuentes4509 12 дней назад

I was treated with Rituximab for Pulmonary fibrosis. While it temporarily had me in remission, a side effect was my teeth breaking and crumbling out of my mouth.

@steph5260 Год назад

I get bloodwork next week and see my Neuro in 3 weeks before my 8th Ocrevus infusion in 4 weeks -I will be bringing up this question as I was diagnosed with RMS at age 50- now almost 54. haven’t had many colds but have had maybe 3 UTI’s and a neurogenic bladder but do not use a cath-i am in oxybutenin which I know can also raise risk of UTI’s this is such a wiked disease!!! But love your videos- best we can do is stay informed!! Can you do a video of the new drug I’ve been hearing about Lapix? (LPX-TI641)

@huskeriam9998 11 месяцев назад

I'm 72 male, and was diagnosed with MS in 2014. Been on Ocrevus for 2.5 years, was on Tysabri for 3 years before, (did well on it) but had risk of PML. I do get the "crap gap" about 5 weeks before my next infusion. My neurologist refuses to give the infusion at 5 months, so I feel really bad for that last 5 weeks, lots of burning pain, numbness, fatigue, and get really anxious. I saw my doctor the day before my infusion, he said I looked stressed! Ya because I'm in pain! Needless to say, I'm looking for a new doctor. Thanks for the informative video!

@rosieposie9564 4 месяца назад

I found your doctor's response enormously funny for some awful, stupid reason, I think I laughed for a full two minutes. In all seriousness, I am glad you changed doctors. Hoping your next doctor will not be a ridiculous comedian and you will get better treatment.

@samlatooni 11 месяцев назад

My neurologist recommended kisempta and I had no choice but to choose it. I thought it is a new drug. The doc says this wil "modulate" my immune system and not suppress. He also mentioned that this usage will be for "ever".... I think I will be toast in any situation 😢..... I take kisempta every month

@minibobber Год назад

Question 1: Is there any study that maps placement of lesions with symptoms and disability progression? Question 2: We have today software and hardware that has faster speeds than our bodies. According to wikipedia nerve conduction velocity is around 120m/s. Our fiber optical cables run at 200,000,000 meters per second. Are doctors researching in curing MS mechanically? Instead of trying to fix damaged tissue, maybe it's easier to create a bridge/complement to the nervous system instead. Just a few days ago an paralysed man was able to walk again by "basically" replicating the signals to his spine that were otherwise blocked and they used bluetooth for transmission. Any info or studies in this direction would be much appreciated!

@skyblue8622 Месяц назад

I was dx at age 27 and just turned 50. I have tried many dmt's and had to stop because of side effects. My last MRI (5 years ago) showed no new lesions or change. Last relapse 2016. The last 2 years have started feeling off balance and weakness after one mile walks. I used to normally walk 2 1/2 miles. Neuro suggested Briumvii. Is there a risk taking Briumvii can cause my symptoms to worsen? Develop more issues that don't resolve once the medication is stopped? I don't think I have a choice after not being on tx all these years. I stay 18:6 intermittent fasting, take supplements, and exercise but I dont think its enough.

@lionessliving9862 Год назад

41F, dx Oct 2019. Started rituximab 500mg March 2020. Oct 2020. April 2021. Then pushed out to Jan 2022 (9months) Had no problems. Last dose was Jan 2023. My cd20 counts were somewhere around 3 in January this year, right before my infusion, if i remember correctly. I have had no signs of any relapse since diagnosis. (Benign MS?) I have also wondered about long term side effects. For now im going to stick with 11-12 month intervals and stay at the low dose 500mg. Im a very active person so hoping im able to stay this way for a very long time.

@merlelybird2726 Год назад

Hello, thanks for educating me and adding new vocabulary to defend myself against MS. I started Kesimpta in December 2022. I had mentioned the “crap gap” to the nurse and she said it doesn’t happen with Kesimpta. It felt like she was telling me my reality doesn’t exist, which sucks. It is interesting to think that I could just take a blood test and if certain numbers were too high, I would just take an injection to even everything out. Currently finishing my bachelor’s and moving aboard. I would really love to hear about your experience about which countries would be the most supportive for people with MS. I always thought about it in two categories: the country with the highest amount of Vitamin D absorption, and then the country with the lowest amount of lesions per patient or oldest person with MS living there or the lowest rate of disability of MS in that country. I have asked a few MS groups but no results. If you know how to collect that data, please let me know.

@matty7758 Год назад

You're simplifying quite a complex question there really. I'd be thinking about what if any drugs i wouod have available to me from the respective health care systems. I was diagnosed in south korea but returned to the UK to receive lemtrada. I'm almost certain that was not available in Korea as ms is very rare among their native population. I lived in Spain after the lemtrada and know it was a lot more difficult to get high efficacy drugs there, simply due to the resources avaliable to the health care system.

@jenadeen Месяц назад

I'm newly diagnosed a month ago. I am trying to understand why we target the B-cells if there are other white blood cells. Why don't they inject plasma cells to replace the destroyed B-Cells?

@therealist093k8 2 месяца назад

I took kesimpta, and right after I felt I was going into heart failure. My chest started hurt where my heart was and I felt so bad, I couldn't breath. I thought I need 911, I just kind of waited it out, and let the symptoms go away. I didn't take another dose, I couldn't handle it, I guess I was allergic?

@faroop Год назад

Thanks for this video. I am getting older (52) and I was on Ocrevus for 1 full year (2?half doses, dose at 6 months, dose at 1 year in march 2020), then took a break to try to get good response to COVID vaccine, and started on kesimpta in April 2022). Now it looks like I’ll need to switch due to kesimpta not being on my Medicare/Medicaid plan). We test B cells and IgG annually and tend to have 0 B cells and IgG has oddly been increasing over last 4 years. Anyway, I’ll be making a decision about a new DMT. I feel it is complicated by immune risks (eg I’ve been having thrush, bacterial vaginitis, utis lately) and the fact of me having only ever had progressive disease (no flares/relapses) and having a very stable MRIs that have no active inflammation, just plenty of confluent abnormalities, black holes, etc. so I worry that B-cell depleters may not be worth it for me. Thanks for the informative video - there’s no easy answers!

@tmoney51691 Год назад

31 here and I’m having this exact situation now with Ocrevus. My neurologist is checking my B cell and IgG count prior to any infusions. I was scheduled for my next infusion earlier this month, but that is now postponed indefinitely due to an IgG count below 500. Thankfully, my B cells are still depleted, and I’m having lab work done once a month until they return to levels high enough to receive my next infusion. My neurologist and I agreed this was the best course of action currently without having to receive IVIg, which has its own risks and side effects. If the wait and see strategy doesn’t work, we’ll explore different medications. My last illness was COVID back in October, but have experienced no illnesses or infections since and feel completely fine.

@DrBrandonBeaber Год назад

Thanks for sharing Tyler

@jackielavelle7974 Год назад

@@DrBrandonBeaber Same for me low igG since the beginning was under 500 no infections so undecided to resume I am 60 y/o, and I have done six infusions.

@alfonsovv70 Год назад

I’m on Kesimpta for a little while is it ok to take this long term ?

@joseperez-fw1vp 2 месяца назад

l have been dealing with M.S for nearly 40 years. electric wheelchair bound and nearly 60 years old with other health issues. l was wondering if l am too old for this or maybe consider talking to my Dr about trying briumvi.

@lauracarlson9260 Год назад

Thanks for all your great videos ;-) I was Dx 18 yrs ago at 40 yrs. I was on Copaxone and Rebif for years and continued to have attacks and progression. Finally my new neuro felt that Ocrevus had enough time on the market and I was moved onto it about 5 years ago the same time I transitioned to SPMS. Since then my EDSS has gone from around 3 to about 6.5. I have continued to work in a very complicated accounting systems implementation type of job and need a stick to walk on uneven surfaces. I feel I am now maintaining through daily PT, activity and plain stubborness. I rarely get sick but in my life I never really have- my immune system is so strong it attacked itself. The only infection I have had is a UTI a couple of years ago but I try not to expose myself too much being able to WFH and being fully vaccinated for everything.

@KelliMaysAboagye 7 месяцев назад

I feel that...my immune system is so strong, it attacked itself.

@rosieposie9564 4 месяца назад

I am not sure about the strong immune system thing in my case. Even before my diagnosis of MS I got respiratory infections constantly, including COVID about 3-4 times and pneumonia after one COVID episode.

@mfalahmd Год назад

Great talk I check B cell CD19 before each dose of rituximab and dose it or delay it accordingly If 0: check level after 2 months and see If 1-5%: 500mg If >5% : 1gm. I find this to be both safe and effective And of course following clinical symptoms, EDSS and mri activity

@TheKnowledgeSeeker Месяц назад

I have RA for 5 years now. And started taking rituximab. So the only way to be out of this danger (as you described in this video) is if I go into remission.. otherwise I have to take this infusion for life long and thus be in this danger?

@Sobuenoo Год назад

I need to get off this theres no such thing as permanent God is alive.

@briandaniel6354 Год назад

I am currently taking Tysabri but my doctor is putting me on Rituximab now. Her plan was to give me Tysabri to stop the aggressive nature of my MS in it's tracks then transition me on to a different medication that I can be on more long term basis. She did originally plan on putting me on Lemtrada, but the insurance company would not fund that for me so her next choice is Rituximab. I will be receiving my first dose in the next week or so and what she is planning is to have a dose of rituximab then another one 2 weeks later and after that every 6 months. She did say though that depending on my reaction and how my MRI's turn up that the drug would be spaced farther and farther apart. So potentially she is concerned with what you are talking about and will have me on the least amount of medication needed to ensure my already heavily progressed MS does not progress further.

@davem3031 6 месяцев назад

I’ve been on Rituximab for 7+ years due to progressive ms. I’ve had 1 lung infection and covid during this time BUT could not directly linked to this drug. Im doing 2x a year infusions.

@DrBrandonBeaber 6 месяцев назад

Well this could be said about any immunosuppressant and any infection. How can I definitely prove someone would not have gotten a particular infection if it weren't for the drug? Even opportunistic infections can rarely occur in immunocompetent people.

@stonz42 Год назад

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.

@DrBrandonBeaber Год назад

Vaccines are less effective in people taking b-cell depleters but they should not be completely ineffective since you would still get a t-cell response. Vaccines with living components are contraindicated in people taking immunosuppressants, but killed-vaccines are not.

@chrisyoung1436 6 месяцев назад

So, I had one of the first Ms stem cell in early 2007. I reactivated 7 years later. Went on Rtxn. 14-20. Got menengitis in late 19 early 20. Almost died. Got out of the hospital just as covid hit. I quit Rtxn in 8/20 because of Covid fears. My neuro saved my life with ivig in December of 19. I am on Ivig once per month. I did take some creative control. I didn't get good covid antibodies response with moderna. I went and got a j&j and that did the trick. I've had 0 issues. Funniest damn thing is since 8/20 until last month I don't have cd20 or cd19. Clint Eastwood high plains drifter music and a tumbleweed bounces by. None. I do have psoriasis. I'm fine. Kids get sick. Everyone around me. I get sick and just hope I'm ok three days later. 😅

@dianefresca6896 Год назад

Just started on Kesimpta at age 68. I'm concerned long term use

@jimsperlakis5634 Год назад

I'm 70 and have been on Rituxamab for 1.5yrs, 4yrs after the 2 dose Lemtrada. I receive 650mg every 3 months. We didn't start with the 1gm initial dose. My ppms has never given me a remission. I just keep getting worse. I've tried Avonex, Copaxone, Techfidera, Aubagio, Tysabri and a lot of solumedrol. It's a losing battle.

@sixtenjohansson4246 Год назад

You fought well. 😢

@robhruska7611 Год назад

I have been on Ocrevus for 2 years an the months in the middle of the treatment cycle have been great but the crap gap has been getting worse each cycle. On this past cycle my crap gap started 6 weeks out when spasms and pain that typically go away during the middle of treatment came back, at that point my hip flexers and glutes on left side got week and walking got harded. At 4 weeks out fatigue hit me hard and one of my rare symptoms the hiccups started back up and were more predominant than before i started treatment. In the period of 4 weeks before treatment and 4 weeks after treatment I had 5 multiple day hiccup events, the worst of which lasted more than 5 days. The hiccups get so bads that I can’t eat, i get multiple hiccups on top of each other and struggle to breath. My spasms pull on my sciatic nerve and cause extreme pain that matches the tempo of the spasms, these symptoms only act up during the crap gap as well, this last time i had one episode of 10/10 pain that broke through my medication and several 9/10 episodes. I am now at 5 weeks out from my infusion and in the last week all these symptoms have improved greatly. So my crap gap is lasting 8-10 weeks. For this reason my neurologist and I have decided to try me on Kesimpta next treatment cycle. I am 5’11 and 150lbs so low bmi. I actually lost about 8 lbs during this time period because of hiccups and crazy nausea which may be the result of treatment or the amount of pain meds i was taking. We are hoping the month treatments will minimize the crap gap effect. Even if i have 3-4 days a month that i feel crappy i can manage that with out losing weight or having my income and business suffer.

@LokiDWolf 10 месяцев назад

I was actually a volunteer for the double blind testing for Orcevus. It was approved by the FDA almost immediately after the trial ended. It turns out I was on Ocrevus instead of Beta-Seron (which I figured I was because of how I felt). I even shared that with my neurologist at the time. I was then asked if I would stay on for an additional 3 years for observation. Which I did. I've been on it ever since. And though I have MS (CIS) this is concerning. I'm wondering if the BTK drug that was mentioned in 2022 is the better option? Because right now, Ocrevus is working well for me. I have (not every time) suffered from the "crap gap". So significant that I wouldn't realize it was close to the time of my infusion until that happens. But, I don't want to be hurting myself unknowingly. I see my neurologist tomorrow. I'll be sure to bring this up and discuss my future with this drug.

@rutgers182 9 месяцев назад

yeah please update us on what your doctor says. I wonder if taking ocrevus once a year is the solution for ocrevus pateints to increase their Immunoglobulin and Plasma cells. Maybe it's do it every 6 months until your Immunoglobulin is going towards a low level and then do it once a year until Immunoglobulin levels and plasma cells are back up high again. Then do it twice a year again. Keep in touch! Gl

@SweetT77777 Год назад

I've been on Ocrevus for 2 years now and all my Ig levels have remained fairly unchanged. I took Tecfidera years ago and within just 9 months my lymphocytes were completely wiped out causing me to have back to back infections (GI then URI). As long as Ocrevus works and my immunoglobins remain steady, I'll continue the infusions.

@davidu6198 Год назад

Thank you for the video. I have PPMS and was diagnosed in May of 2017. Ocrevus was approved by the FDA in February of 2017. I started Ocrevus infusions in July 2017. I have no idea what "crap gap" is. I know others say that there body tells them that it is time for another dose. I only know it's time because my calendar tells me so. I don't ever get sick (coughs, colds, or the flu). I tell people that I don't get sick; I get MS. For my infusions, I don't take any premeds. No Benedryl, aspirin, or solumedrol. I don't ever have any reactions or infections. Other than Covid, had that twice. My twice a year ritual is to go have a beer or two right after my semiannual infusion.

@DrBrandonBeaber Год назад

Thanks for sharing. Everyone definitely has a different experience.

@bluleigh8 Год назад

This was so helpful! I wondered where the immunoglobulins we test for were coming from when I’m supposed to have no B cells left.

@DrBrandonBeaber Год назад

I'm glad it was helpful.

@user-xk3lj3sc5p Год назад

Thank you! I am one of those with comorbidities that already put me at risk for infection, extremely slow bcells replenishment, experienced respiratory infections after just the starting dose. I keep saying that these drugs along with the tcells that jump start the bcells should be given in conjunction with customization for each individual. I know that its expensive to customize, however it's more expensive in the long run to treat major health issues that arise from people taking too high a dose or too frequent a dose if not warranted & honestly, everything works in sequence... I don't get how they can just focus on the bcells. They are missing the point of ying & yang. P.s. I am looking forward to seeing/reading more about frexalimab (?sp) though as my older teen has recurring bouts of EBV & is having a nasty time with her health.

@danielmcinerney9949 11 месяцев назад

Well said I’m terrified of side effects but I have to do something 🤷‍♂️ any suggestions by chance thank you

@ldjt6184 4 дня назад

Thank you for always being honest, Dr. Beaber.💜

@DrBrandonBeaber 4 дня назад

Of course.

@husamhamid1160 Год назад

Thank you very much for the video. QUESTION: wife has optic neuritis + MRI shows lesions only on optic nerve + CSF showing oligoclonal bands. This suggests but doesn't confirm MS because it's just 1 attack. She took solumedrol 1gm IV. Vision improved immediately from 10% to 80%. A month later it dropped and stayed at 40%. One Dr. prescribed retuximap. However, another adviced not to start meds unless 2nd MRI shows more lesions, progression of disease, or expects an upcoming attack! Plz advice what to do? Start or wait? If the answer is to start, should we take another dose of steroid before retuximap?

@DrBrandonBeaber Год назад

I unfortunately can't give personal advice here. This article shows some statistics on the risk of multiple sclerosis after optic neuritis which you may find useful: n.neurology.org/content/49/5/1404

@ksstarm Год назад

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!

@exit33office48 Год назад

I've been on Kesimpta for 16 months. No new lesions. No crap gap due I think to the monthly injection schedule. Had one cold and no other infections.

@tomm8195 5 месяцев назад

How about now?

@Benjoines-p7z Год назад

I have been on rituximab every 6 months. Since February 2017. I was originally diagnosed with nmo but was changed to mog. I received covid vaccine Jan 21. July 21 I got covid and it almost killed me. It developed to covid pneumonia. Long covid I wasn't able to fight it off. I was given steroids and they helped at first but in October of 21 the pneumonia worsened they checked my IgG it was in the low 200s. They then started me on ivig monthly. The ivig has helped tremendously as I was finally able to overcome the pneumonia in December of 21. I was still on steroids until March of 22 and developed severe osteoporosis from the long steroid use. I do strongly agree to get your IgG levels checked regularly.

@DrBrandonBeaber Год назад

Thank you for sharing Ben. This is a perfect example of the point I was trying to make. With anti-AQP4 neuromyelitis optica, the risk-benefit analysis may be different.

@karrinleecasper-bryan1685 18 дней назад

My grandson is 27, newly diagnosed and they are starting him on CHEMO, evidently for life. Should we be concerned…I am. His only symptom was ocular neuritis, with brain and spine lesions. Brain lesions are active, spine is not. These infusions take 5 hours each and done every 6 months

@DrBrandonBeaber 18 дней назад

I can't comment on his personal situation. Many doctors advocate for the use of high-efficacy disease modifying therapy in young people with relapsing MS with a low current disability to prevent future problems due to MS.

@msguidedbits9511 Год назад

Thank you for this video! It has been on my mind lately, and even a couple of years ago, when I was experiencing perceived crap gap I wondered about receiving the drug more often, as I had heard of others doing this. However, I changed my mind as more research showed that you are protected from relapses even when medication is received late. I found out I was on a placebo when I thought I was receiving a drug in my last clinical trial, a different investigational drug while still on O. So I started to question my perceptions, as there are a lot of factors that can cause me to be more or less symptomatic. I also have questioned my own prescription of my crap gap, as in my fourth year of Ocrevus, there is a less defined crap gap.

@DrBrandonBeaber Год назад

I did not mean to downplay the "crap gap" in making this video. I just think it is risky to have continuously low b-cells forever. There is no easy solution.

@sauravmalik3256 22 дня назад

Hi doctor Plz tell me about for pampeguis vulgarius And rituximab is used for this permanent treatment

@DrBrandonBeaber 21 день назад

This is outside of my expertise. I am a neurologist.

@throughchrist.icando Год назад

I was on Ocrevus for the first dose and could not lift my foot up my steps when I got home. After the second half dose I was on a walker within a month. I have seen several neurologist and have had a spinal tap with NMO rulled out. I was a surgical technologist and within a month I could not walk without assistance. I was diagnosed in 2011, this happened in 2019..I still cannot walk without assistance. They tried to give me kimsempta and I got worse with one dose and started walking into walls. I am now on Zeposia because I refuse B cell depleting therapies. There is a fb group of about 3000 now that the same thing happened....

@barbaradascalos4411 Год назад

It is not just bcell depleters...same thing happens with Tysabri. see "Tysabri brain atrophy ms news today"

@barbaradascalos4411 Год назад

It is all caused by gray matter atrophy. see "usual suspect lesions zivadinov"

@danielmcinerney9949 11 месяцев назад

@thoughchrist how are you doing what alternative to ocravus did you or are you going with. I’m nervous about the side effects thank you! 🙏

@dermlover1 Год назад

But you only talk about infection. What about cancer?

@samankiani1072 Год назад

Hi, thanks for the good content. im sam and Im 31, I've been suffering from cognitive distinction and fatigue since early 20s but i didn't knew that i have ms until i was 30 and i got optic neuritis on the left eye. I've been taking interferon beta a1 for about a year now, but im not sure if i be able to take it for the long term because its a hard drug to tolerate. I wanted to talk my doctor into ritaximab. Also I don't have any spinal lessions but i do have about 7 brain lessions.

@UnCannyValley67 Год назад

Consider Aubagio as well.

@aaymjen 9 дней назад

Thank you!! I am in need of help! A 2nd opinion, can I send you 1 Pic of my mri??

@DrBrandonBeaber 9 дней назад

Sorry, but I would not be able to personally help you. Hopefully you are able to get a second opinion with someone qualified.

@henning4070 Год назад

Are b-lymphocytes or plasma cells also responsible for fighting cancer cells? If this is the case, could the b-cell depleting drugs increase the cancer risk?

@barbaradascalos4411 Год назад

No...T-cells fight cancer... CAR T-cell therapy is immunotherapy to target tumors.

@quigonjin6030 Год назад

I’m PPMS and I’ve been on Rituxan since 2017 with a gap during Covid. I’ve never had Covid and rarely even get a cold, although I’m cautious. My dosage was 1000mg every 6 months. My progression seems to happen in small bursts where my fatigue spikes for about a week followed by increased disability. I noticed the bursts happening about 4 months after my infusions. I asked if I could get 3 infusions a year 4 months apart, but insurance would not approve this because my b-cell count was already low. So About 18 months ago we increased my dosage to 2 1000mg doses over 2 weeks, 6 months apart. And insurance approved this??? I was hopeful, but nothing has changed. I still seem to get a burst after 4 months. Any idea why insurance prefers one schedule over the other?

@DrBrandonBeaber Год назад

Rituximab 1g twice 2 weeks apart repeat every 6 months is a regimen used to treat rheumatoid arthritis, so they may be familiar with this protocol.

@dottiehilt8128 Год назад

This video has provided alot of important information! I have been on Ocrevus since it was approved but am no longer receiving it because of low imuglobin levels. I had two covid vaccines, one booster and two shots and blood work showed very little coverage against covid. I was scheduled for Ocrevus this month which was cancelled and am going back to my MS doctor in July to do bloodwork and see if my levels have come up. The plan is to have me take Kisempta but I have been reading on the drug and have questions. Your video reassured me that I should be asking questions. Thank you for providing this information and presenting it so I can understand my lab results.:-)

@DrBrandonBeaber Год назад

You may still have some t-cell response to covid-19 vaccines despite no antibodies which likely provide some protection against severe illness.

@dottiehilt8128 Год назад

I will ask about that and hope for the best:-) Since I posted my MS nuerologist passed five days ago and I just found out:-( A true loss to many including the MS community and his patients.

@merlelybird2726 Год назад

Oh man! I am sorry your doctor past! I hope that you are able to find someone that makes you feel heard as for me that was the hardest part!

@dottiehilt8128 Год назад

@@merlelybird2726 thank you! Fortunately Dr.Jeffery brought on another MS specialist, Dr.Elias to the practice who I will be seeing from now on. I actually met him a couple of months ago and he like Dr.J will be a blessing :-)