Risk of B-Cell Depleters Long-Term (Ocrevus, Rituximab, Kesimpta, Briumvi)
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- čas přidán 25. 04. 2023
- 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.nlm.nih.gov/32840...
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.nlm.nih.gov/36036...
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.nlm.nih.gov/34261...
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.org/content/7/5/...
Living life without B cells: is repeated B-cell depletion a safe and effective long-term treatment plan for rheumatoid arthritis? www.ncbi.nlm.nih.gov/pmc/arti...
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Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
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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. - Věda a technologie
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!
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.
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.
Matt Embry has not had ms long enough...he could get spms at any year...
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.
@@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 🤷
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!
I think your wife should switch to something else.
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?
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.
1. I always ask for "Immunoelectrophoresis of proteins" when I want to check my IG levels
@@belmakanlic1113 thank you!!
Diese Fragen sind wichtig. Wieso werden diese nicht beantwortet ? Why he not answering your questions?????
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.
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.
Have to checked with Calgary ?
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
@@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.
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.
Thanks Dr. Beaber. I appreciate you explaining how the B-cell depletes work and the long term concerns.
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.
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.
Glad a found you. Still dealing with the diagnosis
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!
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
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.
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.
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.
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.
Awesome👍
Vlog on improving fine motor skills in MS patients would be awesome too
Thank🙏 you
Great video, thanks Dr. Beaber. As I understand, the long-term risk/reward ratio can be very different than the one in the first years. B-Cell depleters are amazing drugs. I hope to see some 10+ years-long studies. I know if I take Mavenclad, it will be most likely for two years. I just want to know the same information for B-Cell depleters. Having a DMT route plan makes me feel safer. Thank you very much for your time on this very important topic.
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.
I pray that everything gets better for you. Have read or researched, Dr. Terry Walsh or Bob Cafaro and how they cured their MS?
@@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!
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
@@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.
@@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.
I have had rrms (officially) since I was 24. Prior to that my doctor said I was too young for MS and claimed my problems were from a bad back,. In my childhood and teens I had a lot of exposure to the sun. In the winter it would regularly be exposed to the light/heat through tanning beds. Before I was diagnosed, my vanity made me lessen my exposure so as to avoid wrinkles.
In the 90’s, MS was rare but was only considered for women in their 30’s.
I don’t know of many people in my area with ms.
Now it seems like a MS diagnosis is common for women regardless of age.
Thank you for all of your research. I look forward to more videos as I am now subscribed to your channel.
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.
I'm glad it was helpful.
Great to bring scientific information forward, many tks! Great video!
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!
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
Hopefully we will have better treatments for people with progression despite disease modifying therapies soon. BTK inhibitors may benefit people like you.
Great video, thanks for your work.
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.
I feel that...my immune system is so strong, it attacked itself.
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.
Super-informative, thank you!
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.
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.
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.
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.
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.
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. :(
I havent been taking Kesimpta for a year yet but definately going to mention this to my neurologist. I like that I only have to inject myself once a month and then forget about it, but I dont want to worry about getting sick down the road. I do get the so called crap gap that you mentioned in the video thou not every month so I would say that it depends on my stress level around the few days before my needle/injection. Thanks Dr. B!
In 20 years there might be cure. And as you get older, risk of getting infection is risina naturaly
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?? 🧡
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
Thank you as always, your information is amazing
I was on ocrevus. I am overweight. I was getting the crap gap and had a relapse after 1 year. I had igg depletion very low. I had developed covid 4 times and covid pneumonia. My neurologist switched me to Kiesempta in hopes that it will even out the dose since it is monthly. Also she stated that in her experience patience have less igg issues on Kiesempta. We shall see how it goes. Thanks for these videos. Very helpful
Thanks for sharing and best of luck in avoiding infections going forward.
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’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
I was diagnosed when I was 17 I'm 34 now and been on ocrevus 5 years i love it
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, ...).
Great explanation!
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!
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.
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
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.:-)
You may still have some t-cell response to covid-19 vaccines despite no antibodies which likely provide some protection against severe illness.
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.
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!
@@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 :-)
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.
Best of luck. I hope the video was helpful.
How are you in terms of disability? Can you walk without a cane?
@@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.
@@dragonfire3727 I have spasticity in legs/hips, but I can walk with a cane.
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 :/
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.
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.
Hello. Thank you for sharing this, I am 31 and just started Kesimpta in December 2022.
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.
Thanks for sharing. Everyone definitely has a different experience.
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.
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.
I had problems with injection site infections with Rebif, and my neuro wants me to move to Ocrevus (I've been on Plegridy for four or five years now) and had read that the immunosupressant ability of ocrevus was even strong than Rrebif. That gave me pause and I've since decided to stay on Plegridy as I've had zero setbacks since being on it.
Its always good getting outside validation of a decision :)
Thank you Dr. B, I am waiting to start Ocervus, my blood work came back good but because it has been a while since I have had a mammogram I have one set up for September 14th so hopefully everything goes well and I will be starting Ocervus maybe late September so I will try to keep you updated. I also want to say that I was a Medical Assistant before leaving the Healthcare Industry to drive trucks but now I don't feel safe doing it and I asked my NP if he thought I could be a Medical Assistant again and he wasn't very incoureging he said may get Tremors so maybe couldn't do blood draws so right now I am taking classes for Medical Front Office Administrative Assistant. But, I also want to say,please don't take it wrong, but in some of your videos even me with a Medical Background sometimes I think you forget we need layman's terms 😆 🤣 😂 but I still love watching your videos and this one seemed more of a layman's term video.
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!
I’m 67, diagnosed with PPMS 7 years ago, I’ve had symptoms for over 20 years but never more then a slight limp, my neurologist thinks now’s a good time to start Ocrevus, until watching this I was upset he didn’t put me on the medication years ago but now have a clearer understanding of the pro’s and cons. At this point going through all the blood work and getting various vaccines up to date ie.
Hepatitis B, shingles vaccine etc. if all goes as planned maybe in a month I’ll get my first infusion. 🤞Thanks for the education. 🙏
I hope the video was informative.
20 yrs no med , and just a slight limp ? Good for you, I'm assuming good diet and exercise, probably consistent on supplements?
Always was pretty active, hockey, tennis & golf but last 10 years things changed and was forced to do less demanding sports. Got an electric bike to get me out and work the legs a little. My diet could be better so that’s not the key.
I find keeping my off the situation even for a short time certainly helps my attitude.
Trying to stay positive isn’t easy, hang in there fellow sufferers. Maybe one day they’ll have this one all figured out. 🤞
Thank you. This is really interesting. I'm wondering if you would put patients on any of these if their IGG levels test a little low even before starting treatment. What level would make you comfortable to start from?
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.
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.
Very informative videos thank you. Would like to hear about how you treat CIDP. Thanks in advance
Thank , simple and comprehensive information .
I would request you if you can give information about drugs treat sarcoidosis
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.
Thanks for the video Dr.B! I'm taking Ocrevus for the last 3 years and the subject of your video is something that worries me. I've been doing really good with Ocrevus, no new lesions or any sign of MS activity. But I still have the feeling that I do not want to take this drug for the rest of my life. I'm only 30 years old now and intuitively if feels wrong to take down your immunoglobulins for longer periods. I feel like I might want to stop one day with taking the drug but yeah it's difficult
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.
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.
Thank you for the straight talking. I feel my Dr has been bullying me in to taking kisimpta but I was not confident about repressing b cells
Mine, too. Probably because it is a very expensive one and she will earn commission from it. 😒
@@evrencagin sad but probably true
Thank you Dr.!
This explains why i get crap gap. Last weekend I just found out that this was even a thing by watching a video shared with me by Dr. Aaron Boster I am a 39 year old male and was diagnosed in 2018. I have tried to described this to my neurologist after my first couple of infusions of Ocrevus and He just dismissed it. The half life of theses makes sense why I fell this way a month or two before my next infusion.
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.
Great info. Thank you! I do not intend to stay on Ocrevus forever. I plan on getting to a point with my holistic efforts to where I won’t need it anymore.
Im thinking the same, been on it since early 2020... i've started to get skin infections and colds often. I think through good diet, exercise, rest and vitamin D we can get off this
Problem is none of those things stop ms.
@@barbaradascalos4411 nothing can stop it, not even these DMTs - but you can try and mitigate triggers and help reduce flare ups... But it really all depends on how aggressive your MS is and how far you've progressed. It seems like no one person has the same symptoms and progression.
No...of course DMT only stop relapse...but
ms is not just relapse...there are things much worse like neurodegeneration just
like in ALS.
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.
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?
I have the FCGR2A-3A genetic mutations that lower my response to RTX. Supposedly, people who even have mild infusion reactions respond better to RTX. It seems to me that premeds can actually work against this particular population. I've never experienced an infusion reaction. I always struggle to get to six months, nevermind a year. Nice job with the video.
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)
Agreed - I have BMI 30, and have an ugly crap-gap few weeks before each Ocrevus infusion (since 3 years). Have been suspecting my weight to be a factor, why my B-cells grow too fast - now I know, thanks for the information.👍 Zero infections. Before Ocrevus, I was on Tysabri for 2 years - just a few months after starting Tysabri, plantar warts appeared on my right foot. Never had them before and a year later I had a whole colony of those on my right foot (none on the left). A few months after starting Ocrevus, they seemed to lessen and several months later they just disappeared completely.
Interesting as I would suspect ocrevus increases the risk of warts but not tysabri. Have you had your b-cells and immunoglobins checked while taking ocrevus?
@@DrBrandonBeaber I was astounded, when they disappeared on Ocrevus - but definitely happy. There does not seem to be any protocol in place with immunology exams for longer term Ocrevus patients (yet), unlike strict JC-checks on Tysabri. But, I will ask them to send me my latest bloodwork, to see if they follow any IGs. Thanks a lot
Hi ! I participated on Oratio study for Ocrevus and I took IT for 4 years. M'y doctor wanted me to stop IT because I had candida infection on the mouth for over 13 months. I cannot get rid of IT even if I am Now gaming Nystatin everyday. I had no treatment for a year and Now I had the first year if Mavenclad. I'm a bit worried.... Thanks for your very good vidéos ! And oh I had a huge crap gap. And 2 Weeks after m'y Ocrevus infusion I was feeling phénoménal.
PPMS dx Feb 2020, began 750mg Ocrevus at six month intervals in April. High BMI, got the crap gap about six weeks out from my next infusion. Reported it to my neurologist at each appointment. About this time last year he ran more blood work and confirmed I had high b cell regrowth about four months after my infusions. I was approved to move to a five month interval, and have since had only a slight return of symptoms, with no progression, a week or two out.
No vivid even with exposure. No infections to include the common cold. I've had a few encounters with parasites due to my time abroad in the Army, but those were taken care of promptly. My symptoms began at age 25, when I could have been, and likely was, exposed to Lyme disease. I thought the symptoms at the time, minus the rash and Bell's palsy, were just that. But they were also symptoms of MS. Army doctors were dismissive and refused to test for anything. I went undiagnosed for 25 years, getting worse the whole time.
I just bought a new truck and travel trailer, and I am at the beginning of an indefinite period of traveling the country. It officially kicks off next month, the day after my next infusion. I'll only come back through here every five months for my infusions. I can do MRIs and blood work anywhere in the country, as the VA is covering my healthcare. But we've been doing the blood draws in the chair, before they administer the Ocrevus.
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?
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.
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.
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.
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.
Thanks for sharing Tyler
@@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.
I’m on Kesimpta for a little while is it ok to take this long term ?
Thank you for this information! I have been on Ocrevus for a year. No problem so far for me.
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.
Well said I’m terrified of side effects but I have to do something 🤷♂️ any suggestions by chance thank you
This is very interesting. I was just pulled off Kesimpta after 2 years on it because I had frequent viruses and significant setbacks after each (e.g. COVID three times in 17 months, and it took a good six months each time to recover my lost ground in physical therapy, fatigue, level, etc.) plus shingles (first time) and some other problems. I just came back JCV negative so most likely switching to Tysabri. My MS specialist told me she wanted me on something less immune-suppressing for at least 1-2 years to see if I can make more progress trying to recover from my most debilitating MS relapse (2 years ago).
I'll add, I just looked and my IGG as of March 2021 (after 5 years on Gilenya, before starting Kesimpta) was 519 and as of last August (a year on Kesimpta) was 514.
Hi Brandon,
I was diagnosed with MS almost 10 years ago. I am 31 years old. I started Ocrevus 2018 & was on 6 monthly infusions until getting pregnant in 2021. I was always well, hardly ever sick before this.
I had my baby Jan 2022 & had my 2 half doses Feb 2022, followed by 2 x 6 monthly infusions (Aug 2022 & Feb 2023)
I got covid-19 in May 2023 and went downhill from there,.After 3 months of being so unwell, I ended up in hospital for a week, I had pneumonia & infection in my blood - diagnosed with Febrile Neutropenia. I had the bone marrow stimulating injections & lots of IV antibiotics.
One month later I was back in hospital with rhinovirus which I know is a very minor cold for most people but I again had zero neutrophils.
Then I seen a Haemotologist who had me having a weekly blood test for about 3-4 months. I had another drop to 0.2 neutrophils whilst at home & injected myself with the bone marrow stimulant injection (third time)
I have only just come good in Dec 2023.
My last severe drop in neutrophils was October 2023. I am in Australia & medical professionals seem to think I am a rare case.. I wish there was more information. Do you know of any other cases having such a severe side effect for months after Ocrevus or caused by infection? Ocrevus has been working very well for my MS, no progression since 2018.
My B cells were 1 in October 2023 (10 months post Ocrevus)
And B cells are now 5 as of Jan 2024.
My neuro wants me to try kesimpta in case I have the same rare event…
I would love to hear any information you might have. Thank you, Kristen
Also, I don’t believe I have ever had ‘crap gap’ and always felt good on Ocrevus until I got covid
I ended up in hospital for a week with febrile neutropenia. I had Covid and my fever would not go down with anything so I went to ER thank god it did! Neutrophils were undetectable.
Thank you for adding your thoughts to this. Interesting that it may show up later ( the increase risk for infection for some)
Excellent video
#SharingisCaring
#MavencladMilf
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.
How about now?
that was good info 2 see& know👨🔧good job !! Dr. Brandon
Just started on Kesimpta at age 68. I'm concerned long term use
Thank you so much for this information. Do you have any information about taking Rituximab for Anti-GAD65 Autoimmune Encephalitis? We are considering it.
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!
Your wife is very lucky to have you ask all these awesome questions!
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.
*etiology
I have been in the Ocrevus study since it started in the US in 2012, in the extention study now. No relapses but I feel like I am doing a bit worse lately. I am also 53 and dx for 25 years. My Neuro said she would keep me on it if i go into secondary progressive.
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.
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.
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.
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.
@@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
@@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.
😼
Hello, wow! I am glad you are able to be more open about your MS. I am sorry to hear about your mother.
Thanks for the valuable information dr Beaber! One question: should it be less harmful to take some other type of medication , like gilenya, instead of kesimpta, for long term use? 😊
Kesimpta is also a b-cell depleter and can cause the same problem. Gilenya is also an immunosuppressant but does not typically cause hypogammaglobulinemia (low antibodies) because the b-cells are sequestered but not depleted.
@@DrBrandonBeaber thank you very much for your answer! 👍
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.
Consider Aubagio as well.
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.
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.
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!
Thanks.
I don't know. I just switched to Ocrevus after 5-1/2 years on Tysabri and a change in Dx from RRMS to PPMS. I received my 1st full infusion March 24th, 2023 after the initial split infusion's from September 9, 2022. My luck, I had full blown Covid, again, March 31, 2023. It almost killed me, but I'm still recovering now. I was dx with RRMS March 24, 2017. I'm now 59 y/o. And yet, I think I'd be too scared to modify DMD's to lesser doses or more infrequent infusions. I was pretty much asymptomatic when first dx with MS. Right now, I'm waiting on delivery of my wheel chair arriving within the next few weeks. I'm not interested in reducing DMD, even with age, but relatively new MS dx 6 years ago.
There are many people who are much more concerned with the risk of multiple sclerosis itself than side effects from medication which I can certainly understand. The phenomenon I am discussing is really with long-term use of these meds.
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?
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.
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
Rituxan patient since 2019 for NMOSD. 1g every 6 months. IgG and IgM have been low for 1 1/2 years. Crap gap about 4 weeks before next infusion.
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.
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!
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
I’ve been on Ocrevus since 2019 when I was diagnosed, luckily no problems so far and have definitely felt like it’s helped me, I have wondered though about taking this long term what that looks like and if it my body would eventually stop responding to it, thank you for the video
Psychedelic mushrooms completely helped me get out of MS and depression. It totally rewired my mind Honestly, they worked better than antidepressants.
I got my stuff delivered discreetly by this specialist who sells and ships dmt , mushrooms,edibles etc to any location
Dude is on instagram
@mrwrghttrip