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How Ocrevus works in Multiple Sclerosis
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- Опубликовано: 31 окт 2016
- How Ocrevus works in Multiple Sclerosis
In this video I explain how Ocrevus (Ocrelizumab) works to treat relapsing and progressive forms of Multiple Sclerosis. It's different than every other MS medicine. It is also the ONLY MS disease modifying therapy FDA approved to treat both forms of MS!
Ocrevus is not a pill nor a shot, it's infused via an IV. It's a monoclonal antibody. Think of these monoclonal antibodies as a "smart bomb" that can find one specific type of cell in the body and kill it, while leaving the rest of the cells of the body completely alone.
Ocrevus is a "smart bomb" that only targets and kills cells that express the "hang tag" or "sign" called CD-20. Only adult B cells express CD-20, so all other cell lines, such as T cells, are left untouched by Ocervus. Also, the baby B cells lack CD-20, so Ocrevus doesn't touch them (more on this below).
We believe that T cells are the ones mostly responsible for inappropriately attacking your brain and spinal cord in the setting of MS. However, the T cells can't get fired up and attack very well UNLESS they have their friends the adult B cells there to stimulate them. Well, when we give a PwMS the drug Ocrevus, we effectively kill all of that T cells friends! We kill the adult B cells so they can't stimulate the T cell, and therefore the T cell can't attack the brain and spinal cord.
Why is Ocrevus given every 6 months? Because it takes ~6 months for the baby B cells to grow up! Just in time to kill them too.
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Learn about MS with me, Aaron Boster MD! I started this channel to help my own MS patients learn between clinic visits. I use easy-to-understand language to provide accurate and approachable Multiple Sclerosis education. So, if you’re impacted by MS and want to up your game, make sure to subscribe to my channel right now!
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NOTE: These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos.
Beautiful, thanks Doc. FDA approval obtained - now to get it approved over here. Cheers.
We're not all there yet Jeff. Still working!
I am currently taking Ocrevus and it has done great for me. I do not have to walk with my walker or be in my wheelchair anymore .
That's amazing! Great to hear it's working so well for you
Really??? This is unbelievably amazing!...
But it is very expensive drug 😢
Same here. Ocrevus radically changed my life! I could barely walk, had no feeling or sensations in my hands anymore and was walking like an drunk all the time. No more, I almost completely recovered from those symptoms and have been declared stable for the first time since my diagnosis, 2 and a half years ago. Ocrevus gave me an second chance at life!!
@@walternvt.4983 How many infusions did it take for you to get these results?
This is my MS doctor. Not only is he the best MS physician ever, he is so kind, understanding, and compassionate! I'm am blessed he is my doctor!
#WeHaveMS
Heck yes!! He has changed my world and gave me opportunity to have my life back!
You are so lucky! I lost 2 years and body functions because of my old-school-thinking doc ((
@@AaronBosterMD i have ms priimary progresive and i must anthitermic solumedrol and antialergic before this perfusion are lmp yes or no why thank you (ocrevus) why
I really appreciate this video Dr. Boster. I just had my first dose of Ocrevus yesterday after being diagnosed with MS just before Thanksgiving 2020. It helps me explain what this medicine is and how it works to my wife as she is worried about it. Again your appreciated from Central NJ! Thank you so much!
You've come a long way on your videography Dr. Boster!😂
Thank you for your continued contributions to enlightening the MS society💕
Thank you. I made an updated version of this video: ruclips.net/video/zrRvMJn2A8c/видео.html
The #1 thing I like about Ocrevus.
It's only every 6 months! I get to "live my life normally"(whatever that means)not being reminded that I have MS every time i use my therapy (avonex and gilenya)
Exactly. It's working behind the scenes, where so many other DMT's are in your face from when you wake up to when you go to sleep (Tecfidera being my example). Since switching to Ocrevus my outlook is much better, and I'm more confident in the drug than other DMT's
Just want to thank you again. Not commenting on all your many videos I've watched. I'm using them in tandem with NMSS videos, my doctor's guidance and some other youtubers. This is very emotional for me, as I was just diagnoses this week, have lived an inordinately healthy lifestyle and feel wonderful. I don't allow poisons into my body, including alcohol or sugar, and have lived this way most of my life, so I cry everytime I consider putting poison inside my body on purpose, but I also tear up when I think of my family asking me to please get treatment so I can continue to have a long, happy, healthy life. If it were just me to consider, I think I'd just continue with my holistic, diet, meditation, exercise plan and Christian faith, but considering them makes me willing to consider treatment. You and my doctor and the NMSS and some friends are helping with that. Thx for your part. I'm narrowing things down.
I'm so scared to get on this treatment. It is like chemo, I have the jc virus and cancer is high.. My daughter and sister died from cancer and my mom is a survivor. My husband also died from cancer as well... But I'm so scared. I don't think I can do it... I will sit all day and cry and be terrified that the pml or cancer is developing... It's like mentally losing my life. I already had it ripped from me when I was diagnosed. And I am anti medicine. If I had cancer I wouldn't do chemo.. But I asked the Dr what would be done if I developed either of the "Side effects". How does a medication for one disease have a side effect of two whole other diseases??? I'm so scared. I forgot to mention that the dr said nothing could be done if either side effect happened.
Holly Golightly I have been living with MS for 16 years. I have taken Copaxone off and on, but so afraid of these newer meds, especially the ones that increase risk for Cancer. My Neuro wants me to try this med but the fact that it increases my risk for cancer, something I already have health anxiety about makes it such a difficult decision.
I don't believe it is like chemo. I can see why you would think that about immune suppressing drugs, but I don't believe that's the case with this drug. Of course everybody has different experiences with drugs, but in my case I've had 1 infusion so far, and 1 infusion coming up. I haven't noticed a single negative side effect. I don't have the jc virus, but as far as I know there has been 0 linked cases of PML to this drug. I'm not a doctor, or getting paid by Ocrevus to sway you, but as far as MS drugs go; this one is the front line right now and has the most promise IMO. This is just from my personal experience, but I have really felt freed from MS drugs by taking Ocrevus. I started out doing Tecfidera because I wasn't interested in the injectables. Tecfidera was seemingly going fine until one of my routine blood results came back with signs of early liver damage, so my neuro put me on Ocrevus. It's very freeing to not have to worry about a twice a day medication, or injectables.
Disclaimer: I'm not a doctor, or even incredibly knowledgable on the subject, but I figured I would share my experience incase it does help at all.
Thank you that analogy was great! Helped me understand the relationship between the T cells and B cells! 👍🏼
I have a friend who requested this medicine here. Thank you for sharing
Love the analogy doc. I would've fought less in high school if my B cell friends weren't there!
ha!
I'm on this medication and had my first infusion last week. Thank you.
Congrats Rebecca! #MSWarrior
@@AaronBosterMD ocrevus is one options for my ms pp? i try what i am nurse thanks
I had my first infusion last week also.
I’m looking forward to great things, or even small good changes. 🙂
Thank you for the analogy - I will
Use that when my mates ask me what it is going to do for me stay fabulous 💃💃
Thanks Doc - a nice clean and understandable explanation of what the drug is and how it works.
Glad you found it helpful Julian!
i just came back to this video to remind me how Ocrevus works (2 years since diagnosis & Ocrevus treatment began).....laughing that i still need to remind myself how this works! ahhhh the B and the T cells ..... i like this Ocrevus explanation with analogies abounding!
Howdy Dr. B!
Would consider this a legitimate question?:
(Context, 28 years old male, dx 2018 with PPMS)
“Dr. A, in light of all clinical and para-clinical info you’ve got, and given that I’m on Ocrevus since I started treatment; can you project my level of disability in 10 years?”
My Neuro explained that the CSF exploration did not suggest a very aggressive disease course, but I still feel she is reluctant to project future disability.
I am anxious for insights to the prognosis of my disease; but I understand her position and the limitations of our knowledge. Is a Neurologist, in 2019, able to predict the course of an individual patient?
Thankful for your work in this channel!!!
Looking good Doctor!! Thanks for all you do.
You're absolutely awesome! What a brilliant teacher.
Such an amazing physician
Thank you for doing a Crayola explanation!
I start my first half dose tomorrow, 6/6/19. I've been on other drug infusions since being dx with RRMS in 2006 and progressing to PPMS 2 years ago. I am trying to be hopeful but always cautious
Nicely explained, doctor!!
TYVM Franciir! #WeHaveMS
@@AaronBosterMD hi dr boster i GO to Colentina hospital for first perfuzion of The ocrevus tuesday
Dude, you really should explain to other docs how to explain this to us so that we understand.
Merry Christmas doctor thanks to you I have a better understanding of this word and the Adaptive immune system
@ Aaron Boster.
This or Tysabri ?
What's the difference?
Would you suggest 1 over the other ?
Great analogy!!! But now I have the West Side Story visual in my mind! Lol
ha! "When you're a Jet, you're a jet, from your 1st cigarette, to your last dyin' breath...your a Jet!" 🎵🎵
Im in the UK and started this in April 2019 I was worried but its give me a better quality of life
Hi plz tell me better this injection
I have a multiple sources so worried
Thanks so much for your explanation Dr - Cool examples :-)
When I emailed my Dr about Ocrevus, came an one line reply "Super drug, Super cost", I checked the retail price & dosage in distributor's website, I may have to mortgage my home, to take a loan - which I can payback through next birth, if there is one :-)
Autologous treatment? "No stem cells for you"
Show Ayurvedic package brochure.. "It has steam bath - NO"
Very conservative person, Hope the Govt here arm twists pharma companies to reduce prices (via volumes of scale) like they did for cancer & other life saving drugs - Will wait for now
arg.
I hope GB. Will use Ocrvesus.... it's going in the right direction.xxxx
yeah!
I have been diagnosed for almost one year, but have had disease activity for many that doctors could not figure out. I took Rebif first... continued with another very severe relapse. After feeling ok for several months... wheelchair and all. at the point my neuro would not change meds. So, in oct I found an MS specialist at the UCSF clinic... started tysabri in Nov. I have felt AMAZING. Just started with modafinil for fatigue and am doing good over all.... just little things. BUT my infusion days are terrible. my veins burst, I get swelling and bruising from 3-4 IVs started til one works. SO much that after my 4th infusion the nurses recommend a port. (This has never been an issue before) last time it took 4 nurses working on me then they decided to use the AC. Anyway, my neuro will not recommend a port. and so.. he thinks I should go for Gilenya, I asked for Ocrevus... as I am thinking 6 months is not as bad as every 28 days for an IV. He thinks Gilenya is a great chance of working for me etc. I am scared of switching to something that may not work. I was in a wheel chair and losing vision 6 months ago and I am finally somewhat normal. What is your take on going from Tysabri to Gilenya? is it considered as effective?
This is the terminology of t and b cell (high school boys fighting)i aleays use to explain it in pakistan
Well, thanks for the explanation - but what if the immune system wants to target something other then the central nervous system? Such as a virus or something?
Hi Dr. Boster,
This is definitely not the proper channel to ask questions, I'm sorry if it places you in an uncomfortable position. Please just ignore this question if it does. I wanted to ask you to somewhat help me better understand and set expectations properly. I have my 2nd Ocrevus infusion in February. I'm happy with the results from the first infusion.
I wanted to ask about the future of being on this medication.
Is there a stop date to stop or transition off Ocrevus?
Are there follow up medications following Ocrevus treatment?
I think I somewhat understand that this is a new medication, which was approved in 2017.
Thank you for your help.
Rajiv
Ocrevus, as with all DMTs, are intended to be taken long term. We would only stop if there is safety or tolerability concerns, or if we see breakthrough MRI or clinical disease activity
Thank you!!! I have some useful info for me and my mom before my infusion.
right on!
hello doctor Boster!
I have a question. :)
My mother is on Ocrevus more than 3 months. In that time her condition got even worse than it was before. After what period can you see improvement with this medicine and is it normal to not feel any improvement (but opposite) at the beginning?
Ok doc keep talking I'm listening you got me 🤔👂👍
right on Diane!
Is it just me or is the light above Dr
B's head making a glare on the white board?
I'm a visual person and really wanted to see what was on the board.
Good information though don't get me wrong.
Sorry Alicia! I videographer I am not LOL! I'll keep trying to up my vid quality!
I use O for 1,5 years now, am 35 and developed a skin ulcer on my leg :( is this due to O you think?
Do you find that PwMS are upset by the Ocrevus TV commercials?
Hi Dr. Boster not taking Mavenclad Horray my Dr new I didn't want Mavenclad He prescribed Ocrevus I'm just letting u know..How you like the great news
Hello Dr..I have a few questions for you is there a way to contact you inreagrads to M.S Questions?
Please feel free to post them right here!
talk to your MS provider. It's generally not an issue because of the MS itself BUT may be an issue depending on which MS medications you are on.
@@AaronBosterMD Thanks so much nice to know that 💫
I have PPMS was just diagnosed this past Aug. I am 52. I am really considering ocrevus infusion. Is it safe for my age? I am rapidly getting worse. I tried ampyra and had no positive results. I'm concerned as to whether my insurance will cover it as well.
I have no concerns about age when considering Ocrevus in a 52yo PwMS.
@@AaronBosterMD ampyra is for edss 4+?
Hi. I am getting my first Ocrevus infusion in 2 days! I was wondering if you can answer me a couple general questions. First, have you noticed that patients on Ocrevus get cold sores more frequently? I am prone to getting them anyways and have been for years, and worried that I will have a constant cold sore on Ocrevus! Also, is there a PML risk with Ocrevus? Thanks so much
Talk to your doc about cold sores. There is prophy medications that can be taken to help prevent them.
@Lynn Lizzie no pml risk and no cold sores for me !!!
@@deneaneharris4550 Thanks!
Hi Dr. Boster. Does ocrelizumab have any anti-inflammatory like effects on the ms? Also, don't certain T cells express CD20?
Dr B. There’s another doctor (Dr Brandon Beaber) who is talking about risks of being in B cell depleters long term. Is there a risk of being on these long term?
Doctor Aaron Boster,
How long time needs to see the first results after infusion? How many infusions do patients need to stop MS? And would be Lemtrada the option to switch on from Ocrevus? I did hear about great results and amazing recovery even after the first infusion of Alemtuzumab (One girl could not walk at all, had broken voice before Lemtrada. Now after second infusion what was 1 year ago she walks 14 km. slowly)
I had Ocrevus infusion in June, had an attack in August and MS is still progressing ((
Thank you very much!
Too many variables to predict Tatiana. Every drug has "knocked it out of the park" at least once. How one person responds to a given drug vs. another person or another drug is very individualized.
If i make ocrevus i have ms priimary progresive you do lmp and i must be solumedrol before antithermic and antialergic? Thank you
@@AaronBosterMD Good evening Dr. Boster. What are your thoughts on high dose Biotin?
Do you know of anyone the high dose biotin worked for? What should I expect from the HSB? Thank you Dr. Boster
My ms doctor îs Ioan buraga from România excelent he îs wonderful he îs Colentina hospital
So what is the purpose of the B cell though? If we kill the B cell wouldn’t that have a side affect?
we don't kill all the b cells. we leave the baby cells to grow back (hence the need to retreat every 6 months) and we leave the plasma cells so we can still make antibodies.
Been on it for the past 2 yrs and wish i didnt need it, considerng trying the natural route and taking time from it but not sure. thx for this info! can bcell treatments help with MS?
Hi dr.B Is it possible when it's almost time for your Ocrevus infusion again, you'll get back some of your old symptoms, also known as 'crapgap'? If so, how can you explain this?
Crap gap is worse than your baseline. It's a feeling worse than you ever had before you started Ocrevus. I wish he would answer your question.
This happened to me I literally was passing out while having my infusion didn’t know I think I might’ve had an allergic reaction needless to say I didn’t go for my second infusion which they told me would be better I was too scared and I had every symptom I’ve ever had come out all at once also new symptoms it’s been a year and I’m still not back to where I should be
@@juliemcneil9197: This is one of many reasons I don't want to even try Ocrevus. I have so many medication allergies that I joke I am the reason for the .01% warnings on medications. I was diagnosed with PPMS in Nov. 2020, and am trying lifestyle changes for now. Best of luck to you and everyone else trying to find their way through.
My doctor told me, I need to stay away from anyone that is sick while I am on this drug. I have not decided if I want to go ahead with it yet. I have 10 grand kids that that love to visit. It seems at least one has a nassel drip or fever. Does this drug lower the immune system?
Important to listen to your doctor about your healthcare. This channel is intended to empower, energize and educate folks impacted by MS.
Hi Dr Boster. I was diagnosed with PPMS in 2014. After my recent MRI in 2023 my doctor is considering Ocrelizumab. The complication is that I had an episode of Hep-B in 2016. Although now Hep B DNA PCR is negative since 2016 but I fear that if I take Ocrelizumab then the Hep-B may resurface. Please advise. Thank you.
Hi Dr. Boster.
I wanted to ask you about Stem Cell therapy, specifically HSCT. A neurologist I saw said that it doesn't work. Could I please get your thoughts about this?
GreAt vid.
Thanks Ken! #WeHaveMS
Thanks for the video! Do you ever give Ocrevus on a different dosing schedule than every 6 months? Can it be given more often if the patient is experiencing breakthrough activity?
Howdy Joanne. I think you should definitely talk to your MS provider if you're concerned about breakthrough disease. I personally don't think I'd take that approach at this point.
Oh man, does anyone know the breakdown like this of Kesimpta/ofatumumab? I had no idea that the medication names explained the mechanism of action😳
Here's my thing.... being on rebif rebifose for a while and now that I stop it and take ocrevus I don't if it takes a while to see results but it's been a good couple weeks or 3 and so far I have only seen a decrease all around my drive to get up and use my walker instead of my wheelchair got minimized and I haven't seen a positive improvement at all yet and I will believe that by far now I would see 1 but none so far have you heard anything like this doctor ?
too soon!
i follow a MS support group on FB it seems rather common for folks to have bad itching with ocrevus ?
What would be the effect of boosting the immune system while on Ocrevus? Would the O just be "cutting out" the specific part of the immune system it targets while the rest of it gets boosted? And is there a benefit to doing that? Or a risk? Basically I'm wondering if I can try to stay protected from all the common illnesses but still stop JUST the part of the immune system that is responsible for MS.
hey Doc i am a patient from Nepal diagnosed from MS,all drug therapies done but i got relapsing MS how can i get treated,please help me?
Do you have a Neurologist you see there Kaushal?
Can you talk about Mavenclad? I know it hasn't been approved in the US, but it's approved in Canada and Europe.
I'll add it to my list!
Thank you so much! There's very scarce info on it online! @@AaronBosterMD
@@AaronBosterMD Also can you talks about Clemastine and the research on it. It's very interesting!
right on
@@AaronBosterMD în România no exist mavenclad
I was diagnose with Ms
But my biggest symptom is I cant breath well and feel like I'm going to forget how to breath or just stop breathing. Why is that Dr?
ruclips.net/video/zfD0pRtpkc0/видео.html
I’m on 20 mg 1shot a month of kesemtpia my Nuer dr hasn’t suggest to switch or anything
Is there anything wrong with switching??
Hi again , I have my ocrevus infusion o the 14th do u recommend stem cell therapy more or less than this new drug ?? In your opinion ?? Professionally of course also what can help replace your b cell safely
Can you please please say me ..... if we take Ocrevus then we have to take steroid as normally taken per week??
Hi Dr, Rituximab also works in the same way?
Left handeddd
Would it be safe to say that a typical mail that was diagnosed at 40 and eight years later has EDSS of 9, Will not benefit from “o” or any other therapy?
I don't have enough information to comment thechadder.
Why specifically cd20 and not say...cd19 or cd23?
CD20 is the "hang tag" expressed almost exclusively on adult B cells. Both Ritxuan and Ocrevus are antibodies designed to target CD20 specifically to kill off these adult B cells cells specifically. Sorta like a "smart bomb."
more people on fb ms support group have recommended HSCT to me more ? i was recommended to see a HSCT clinic Dr Ruiz in Monterrey seems to be the best of the best Dr who does HSCT . it seems somewhat unethical how HSCT clinics in 3rd world countries use FETUS stem cells but HSCT seems to be more effective at places such a clinica ruiz .
i mentioned HSCT to the neurolgist dr in houston he didnt recommended it since its too risky ( i read how its fatal to around 2-5 % of people undergoing HSCT ?
Has Ocrevus shown to slow down non inflammatory progression and or improve mobility for those on it?
yes!
Aaron Boster MD Dr Boster. May I ask, if one tries Ocrevus from using Tecfidera can you go back to Tec if Ocrevus doesn’t suit?
Dr B, I think you were involved in the Ocrevus studies and I was wondering if you knew how they determined the 6 mos. dosing intervals? Do you measure CD19 (CD20) on patients to determine B cell reproduction and should this guide infusion frequency. Thanks so much!
It takes 6 months for your pre-B cells to grow and mature into adult B cells. By dosing every 6 months you maintain suppression of these adult B cells.
Thank you, so is the following study not credible to real world treatment strategies? nn.neurology.org/content/5/4/e463 🤷♀️not being disrespectful, just curious-
Thanks for sharing. This was a single center study of only 45 patients who have a larger body size than average. It is very interesting clinical observation that should be replicated. Confirmation of this in the future could help us change dosing for larger than average PwMS.
Very true. Thanks for pointing out the small sample size. I am so very appreciative of your informative videos,, your willingness to engage in dialog with your viewers, and your insights. Again much thanks !!!
YW Elizabeth
Hello Doctor,
my mother's condition has changed from RRMS to PPMS and her doctor suggested to switch from Rebif 44 to Ocrevus.
My questions:
-Is Ocrevus better than Rebif? (Rebif didn't make her walk better, but it seemed like it has stopped progressing of MS. Is there a chance with Ocrevus to improve her condition better than Rebif 44?)
- Do we have to be worried of Ocrevus side effects? :/
I am lookig forward to hearing from you!
1. yes
2. I have videos on this topic. Here you go: ruclips.net/video/xROT3Uk7Z3U/видео.html
@@AaronBosterMD Thank you for your answer! :)
YW!
Sharing
Hi Aaron , are these b cell specific to hep b antigen..
Becuase I got my speech slurred ...only after hep b vaccine ....
I was celaic for more than a decade where brain inflammation was NVR a symptom .
I feel b cell specific to hep b antigen r able to evade blood brain barrier with ease
Zap, Thank you for watching and thank you for your question. There may be a bit of confusion surrounding the terms. B cell specific disease modifying therapies (e.g. Ocrevus, Rituxan) kill adult B cells. These are a subset of lymphocytes (a type of white blood cell, part of the immune response.
Hepatitis B is a type of virus. There are several strains of hepatitis, including A, B, C and E. This "B" has nothing to do with the "B cells" of the immune system mentioned above.
this is what i am no afraid of .. hep b vaccines is causing neuro inflammation in people with allergies mainly gluten allergy by perforating blood brain barrier & many studies r claiming it but CDC hasnt even mentioned on their website & they r fooling people worldwide & is the main cuase of autism ,MS , optic neuritis ,ADHD ,epilepsy ,so many testimonies of it on youtube ... now i m stuck with it ..i hv learned if memory B lymphocytes along with long lived plasma cell r depleted succesfully ,then this condition of neuro inflammtion is permanantly cured
ocrevus is already depleting memory b cells
Hi doc, thanks for the elucidation. My neurologist proposed Ocrevus to me, now more than a year ago, but I declined out of fear for the side-effects. Not the immediate infusion-related side-effects, but the longterm efficacy of the immume system. Does Ocrevus make you MORE vulnerable to colds, influenza, even cancer? I get a cold quite easily, that’s why I ask. And in practice, it’s very hard to stay of my face/eyes when something itches, which happens frequently. I’m currently on no DMT at all (have been on copaxone for about nine years), for no good reason. But my diet is clean (OMS) since I have MS, I never smoked and I do exercise (MS Gym now for almost two years). So most puzzlepieces are ok, except for medication. Despite all the efforts that I’m doing, there’s certainly a decline going on, for about three years now ( diagnosis was 13 years ago). That’s why I am considering medication now again. Thanks for your answer!
I think it's important to note that drugs affect everyone differently, just like MS affects individuals differently, so there is no 100% certainty. I'll offer up my experience in case it does help you to make a decision. I had my first infusion back in June, and I had all the same concerns... I don't believe I have been more vulnerable to colds / influenza since my infusion. I have had a cold earlier this season when it was going around, but just about everybody I know also had it, so I wasn't all that surprised. My girlfriend is a nurse who is likely very exposed to all the colds and flu's floating around, so I was prepared for the worst, but I've been pleasantly surprised.
- Not a doctor, or employed Ocrevus
I been disabled with MS since summer 2018 i started glatmirer acetate injections 3 x a week 1/2019 i seem to have zero side effets with however the neurologist i see recommends that i switch to Ocrevus infusions which im reluctant since i already have zero side effects with my current meds , however the neurolgist i see in houston 2-3 x a year said the first infusion would be administered 1/2 the dose the first time and the other half in the same month to see how i' will be ok with the first infusion .
my walking seems to be the main thing that troubles me the most i mean i wak simlar to someone whos very drunk and i fall down around 2 x a week.. haha which isnt so good since i gained around 30 pounds (200 pounsd now) since i was diagnosed with ms :/
Hi Justin,
Since Your neurologist
has recommended Ocrevus, I would try it. I’ve been on Ocrevus for 2 and 1/2 years with no side effects and its helped with my walking!
Looking snazzy!
I have MS but still no symptoms (brain lessions found randomly through a non-MS related scan). the lessions are progessing but i feel just as usual: lots of sport, very strict diet since I am young. I was offered to start ocrevus now knowing the l;essions are in my spine. Is anyone in similar boat as I am? I am concerned about starting a treatment for something to cure something I dont feel or see
How was your brain MRI? Any lesions there?
Cool.
TY
Where are you located? You say things that None of my 4 Neuro has every told me!!!!
Ohio
My neurologist wants me to switch. I have a stable M.R.I. After two years on Tysabri. I think it works good for me and don’t want to. What do you think a reason for switching would be? This one scares me.
I'd ask the neurologist why they want to change and share your concerns about changing. It should be a discussion with a shared decision!
What do you think about Ocrevus and Ivig taken in the same period of time?
I responded to your twitter DM ;)
Will this drug work better on a specific diet & exercise regimen.
Hey Da Man! All people with MS will do better if they adhere to a healthy diet and exercise program, avoid tobacco, supplement low vitamin D and take an effective disease modifying therapy. Drugs alone don't cut it with this condition!
Ok thank you.
In case you haven't seen this one yet: ruclips.net/video/TSr03KmGDIM/видео.html
Thanks for the video! I still have a question... When you are on Ocrevus, after how long do you think this DMD will work? Is the depletion of the B cells done right after infusion or does ik take time?
many say that it's hard to tell until the person being treated is 6 to 12 months into therapy. This is important to discuss with your provider for sure!
And your thoughts or experience with Rituxan->Ocrevus. Of course, not looking for healthcare advice, but since study won't be complete before January 2019, I would love to hear another without the simpleton response of well O is FDA approved for MS.
murraymgmt we have successfully switched over many PwMS from rituxan to Ocrevus. We have opted to NOT do the divided loading dose of ocre, instead we give the full initial dose in one infusion run slowly. This far we haven’t had a single issue during there infusions
Aaron Boster MD, that's the biggest problem I have with my accepting a change though 1 of the TB labs came back inconclusive, so going to have a PPD tomorrow. Had my EDSS yesterday because I hadn't had one since July, and am due for next month when I Gain Awareness in MyStory. I would rather have it all than have a taste that I believe to be insufficient.
Aaron Boster MD What is PwMS?
murraymgmt PwMS = people with Multiple Sclerosis
That's me! :)
I called and left a message for my MS Neuro,, that that is what I want. The full 600 mg, especially since I was at 1000 mg per Rituxan due to my AOMS and had 2x1000 to start separate and then 2 more in 6 months, before my CD19 was finally 0% and absolute zero before my 5th of just 1000 mg once. Now in March, I am due, so if switching that is what I'm doing. Efficacy in anything has always been my approach, which is why when I heard your verbiage I was so impressed. Okay, I will let you get back to your due diligence. Thank you for documenting. Carry on. Onward and upward...
I finished my second dose of Lemtrada October 2016. I haven't had any relapses since then but have been steadly declining with foot drop, spasticity and decreased mobility. My neurologist believes I've transitioned to SPMS because of no inflammation on my MRI. A new neurologist is contemplating putting me on Ocrevus. I know they target different cells but is there likely to be any difference in results?
Jodi, I'm afraid that It's not something I think we can easily predict.
Thanks for getting back to me. I really love and appreciate your videos. I live in Canada and I wish we had neurologists like you here. Are they doing studies to see why some DMTs work so well for some but poorly for others?
yes! The most exciting studies, IMHO, look at genetic predisposition to respond to a given drug or not. This is EARLY work but, if successful, will really help us better pre-select DMT for PwMS!
Aaron Boster MD thanks I really appreciate your feedback. I have 2 neurologists giving me Different feedback about next steps after Lemtrada. One wants to proceed with ocrevus the other tecfidera or aubagio. I’d appreciate your anecdotal thoughts about this.
Jodi, Unfortunately I can't provide you with a medical opinion on RUclips. I'd need to review your entire history, examine you, review MRI scans and laboratories before I'd be in a position to answer that question.
You said T cells aremost commonly stimulated by B cells. From what else might T cells be stimulated?
The T cell is primarily stimulated by the antigen it binds to. That T cell- antigen connection isn't enough, however, to activate the T cell. It also requires something called co-stimulation at the same time as it binds to antigen. Many different cells can provide co-stimulation at various times during this process and in different parts of the body. B cells provide co stimulation. Other cells like dendritic cells also can provide co stimulation at times.
+Aaron Boster MD Ok, thank you very much, Aaron. I've learned more from you than I have my own neurologist in 3 years. I'm not on a DMD yet as they all scare me. I tried Copaxone in the past but I reacted badly to it with ongoing chest pain (not an IPIR), among other things, which surprised me because it seemed to be the safest for me. I'm trying to decide now which one to take, or if I'm better off without one. It's a tough decision.
Kelly J - Please, please, PLEASE don’t wait too long to get started on a DMT!!! I had MS for 20+ years before it was properly diagnosed. I went through doctor after doctor, and each one gave me a different diagnosis (and therefore, treatment) before I finally found a doctor who figured it out in less than 2 months. But, since I’d been untreated for all those years, my MS suddenly became extremely active and debilitating. Now I am unable to work. I’m 42. Widowed. With a 10 year old daughter. Social security from my late husband is my only income. This should NOT have happened!!! Part of me gets really angry when I think about how different my (and my daughter’s) quality of life COULD have been right now, if only I’d received a proper diagnosis and treatment. I have been on two different types of interferon injections. The first failed miserably. The second was better, but I still developed “sub-clinical” disease activity. This month I’ll be starting infusions once a month, in hopes of halting this beast called MS in its tracks.
All of this is not meant to scare you, but to implore you to PLEASE find an MS specialist and get started on the DMT that is right for you. Because MS can sit quietly by with symptoms that are just annoying, and then literally in the course of a few days or months, rear its ugly head and cause PERMANENT and LIFE-ALTERING changes.
Grab this beast by the horns and show it who’s boss!!! Your future self will thank you. And then someday when you’re old and gray, you can smile and say, “Well, I’m glad I took charge of my treatment because I’m still able to _________.”, instead of wishing you’d been more proactive and protected your FUTURE health and function. I wish so badly that I’d known that all the random, bizarre symptoms I’d been experiencing were because of MS. If I’d had treatment all those 20 years, I’d probably still be working at my dream job as an RN on an oncology floor in one of the Midwest’s highest ranking hospitals. I lost that when my MS very SUDDENLY became very active. My life literally changed in the course of 3 months, in large part because it had been festering all that time and everyone wrote it off as a “pinched nerve” or a weird coincidence.
Don’t let fear hold you back! Educate yourself, ask lots of questions, then grit your teeth and dig in! One day you’ll be glad you did! Be an MS Warrior!! 💪🏽
We want you to be "4 for 4" in your fight against MS Kelly!
Thank you for sharing! I share your perspective and I am touched by your passion Megan. Thank you!