Multiple Sclerosis Vlog: MAYZENT, MAVENCLAD AND VUMERITY, OH MY [2020]
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- เผยแพร่เมื่อ 11 ธ.ค. 2024
- MAYZENT, MAVENCLAD AND VUMERITY, OH MY! In this video I share my evolving opinions on these new oral MS medications.
2:20 MAYZENT
4:45 . MAVENCLAD
9:33 . VUMERITY
The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule!
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COMMENT with your thoughts and questions below! I look forward to reading and responding!
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NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help education others. 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. They are just to help educate you about the condition guys!
I take Vumerity. I've been on it fir 2 yrs. It's my 1st and only drug. I'm doing very well on it. I don't have any side affects and my disease has been stable. Fingers crossed it stays that way!
Mavenclad has changed my life for the better! Fatigue has lessened, I’m asymptomatic and I don’t have to take pills everyday. This has been such a win!
Same!
Can I ask what meds you had before?
Hi, im glad u are going well too. Do you have SPMS?
I have a very active MS and was recommended to take Mavenclad. I am about to start year 2.
After taking year 1, i have been improving a lot. Got an MRI and there are no new lessions and the lesions I have are smaller. I have improved in fatigue, cognition and in overall my health. I am very happy to have use this drug as my first MS DMT. They have told me that using it as a first drug gets the best results. I hope that I could achieve NEDA but I wanted to say that Mavenclad for me has been excellent.
Hi, im glad u are going well. What type of MS do you have? Is it a SPMS?
Always a pleasure to hear your insights on the new additions to the slate of MS Meds. I hear this drug Vumerity does have more tolerance than Tecfidera. I may consider this as Tecfidera was something I came off due to GI issues. Wishing you well in the new practice. I'm doing my best with my POTS to up my water game.Your opinion has merit!
Great to hear from you AJ's HR! TY for the comment and if you do try Vumerity we'd love to hear how it goes! #MakeMSBoring #WeHaveMS
Why do so many “new” treatments nowadays remind me of beer commercials from the 80’s: “same great taste but less filling”...
That said, Mavenclad rules: My first cycle was nearly two years ago and I didn’t even need a refill yet. Complete tranquility with no side effects. Maybe I’m even healed? Who knows...promise I’ll let you know 1st if that’s the case...stay tuned 😊
hotpastrami... lets us know!
Oh..and how did you get it two years ago. Didn't it recentlky come to market? thanks
@@Sbannmarie only in the US. It's been in Canada a bit longer and in Europe ever longer.
Will be interested to know how you are doing on Mavenclad now. It has been very beneficial for my daughter do far.
How are you doing now! Let us know!
Can’t get enough of your intro!!!
21 DMTs! That’s wild. When I was diagnosed in 2000 there were 2! What a miracle!
#MakeMSBoring
I was diagnosed in 2000 !! Those 2 where like "placebo" when you put them side by side with today's DMT'S !!!💪💪💪
Pedro da Costa Pinto absolutely!!!! How old are you if I may ask?
@@Scotty.Rosencrance 44
Monday I'm going to start lemtrada R2 .💪💪
Hi Dr. B ! You're awesome !!
I totally agree with you, the best way to fight MS is with Mavenclad and LEMTRADA, talking about current medicines(I'm not forgetting HSCT). I think the path should be reducing the problems and side effects with these kind of medicines, turning them more safe.
I was (formally) diagnosed in 2009 when there were ZERO oral therapies , I’m thankful for all of us !
#StrongerTogether
Thank you for the Monday.i morning videos. Much appreciated. Have a great day
Thanks Dr. B
Your thoughts on Mavenclad have helped to understand why my neurologist may have recommended Cladribine treatment. I am starting yr 2 of treatment in April.
I really appreciate your "evolving" opinions. Thank you for being open about your own education pathway.
Hi Dr. Boster! I received my mug with my special request fulfilled! Thank you so much.
Thank you Dr Boster, love your films and your opinions. Keep them coming 😀
My doctor is planning to change my DMD from Rebif to Cladribine. My RRMS is aggressive & advanced and still active while on Rebif. Had double relapse 2 years after first solumedrol and just 2 years after I started Rebif. Hopefully it will reset my immune system (and doctor opted for that and I agreed because both of us know that I want to plan for a family) so that I don't get relapse/flare/aggravation too frequently (and hopefully it will stay that way for a long time). Thanks for the information. I have done some homework before I signed the consent document and your video helped to explain to husband.
Based on how Mavenclad was studied (placebo vs drug) and the limited follow up data available, IMO the risk profile for Mavenclad is higher than Lemtrada. At least Lemtrada has the REMS program.
I'm just happy we have options now we just need a CURE!!
I'm with you,we darn sure need a cure.
Thanks for another wonderful video. Haven't had the med talk with neuro yet....still fresh dx. but I know that I can speak intelligently with him due to this and the other videos. Many thanks and blessings. Hugs to River!
PS. Do the wonderful coffee cups come with lids ( for those who shake a little.... Or maybe a lot)?
Thank you for the information on the new drugs.I am so pleased with Ocrevus and it has been a life changer for me :-) Hope your new clinic is coming along :-)
So I work in a hospital.. could it be dangerous being on a dmt and working in a hospital? Seems like it would be way easier for me to get really sick.
Have a great day everyone! I am going to if you do!
You too!
Scotty that's a deal!
You too, and thank You!~John
Thank you so much for the mayzent info! I’m 49, had ms since 1998, but diagnosed finally in 2010. I was on copaxone, then tecfidera which I became allergic to, and currently on gilenya. My neurologist wants me to go on mayzent, he claims it’s “safer” but I’ve always been hesitant. Thank you so much ☺️❣️ I wish you lived in Phoenix, AZ.
Thanks for another insightful video dr B! I have just finished my second week of Mavenclad. I like your thought of 2 kinds of patients. It rings true to me. Many patients I talk to about my choice say they don't like the idea of making irreversible change to their body. I prefer the idea of induction therapy and not being confronted with taking meds 'all the time'. Let's make MS boring so my life doesn't have to be. ;)
Here in Europe Lemtrada is off the table for the time being because of the risks and in the Netherlands hsct isn't available. Luckily Mavenclad is.
I am doing quite well on it atm, I hope it stays that way but I'm well aware I may encounter some serious side effects now that my immune system is temporarily down. Let's hope for the best.
Again thanks for your video ❤️
What do you mean by irreversible change to your body on Mavenclad?
I'm just so anxious for April to roll around and hear what you think about my situation. I love your "evolving" opinions... perfect!
Good morning Dr. B!
You said something about Siponimod being more appropriate early in the disease and not later. What is a good DMT for later? I have been on Avonex (made me to sick), Tysabri (quit after 2 years, to risky), Copaxone (near heart attack, weak), Tecfidera (Lymphocytes to low), Aubagio (was ok on that) and currently in a six month trial, which is ending for me for Siponimod. I am a 61 yr old male. about a 5.5 EDSS. I felt some cognitive improvement (less cog fog) but worse in lower body while on Siponimod.
Excellent video topic Jon thank you for the question!
Thank you so much for this information. I I am presently taking Gilenya and I am trying to decide what would be my best choice in a medication for my now secondary Progressive status. As I no longer believe that gilenya is the best medicine for my situation. And I was hoping that Mayzent was a possible candidate. And I was very interested in what you had to say about. Cladribine I like the idea of an infusion situation. But the one thing I did not get from this video was an understanding of what occurs when taking that medication after the two years of dosage. Does one continue Using it after that. Or does one move on to a different medication. Or no medication at all?
You really didn't go into any explanation as to WHY you don't like Vumerity. I read that once it's in the system, it works the same as Tecfidera.....but without the GI upset, or at least minimal GI upset...... Can you go into more detail as to why you wouldn't use it in your clinic? Thank you.
Currently take Gilenya. Plan to eventually visit your clinic at some point (approximately 6 hours away) hopefully soon. I just wanted to know if there is any recent negatives of taking DHEA short term with Gilenya. Had not seen recent articles. Watching for possible MS meds in case something better comes along. Appreciate updates, value your opinion. Thank you
Thanks Dr. B
Thank you so much for explaining these. My Neurologist gave me the print up for Mayvent. I had a heart attack in Oct 2017. The Cardiologist said it’s OK. The info was concerned about the Heart. Would I be concerned with taking this Med? Thank you for your expertise about this.
I have taken my first year of Mavenclad and I tolerated it well. I just ate good and drank plenty of water. I’m sure keeping my hopes up with this medicine, because it is so much easier, than all that I’ve tried. Thanks for your opinion. I really appreciate it!!!
I took Tecfidera and on the second day my doctor took me off it ASAP due to severe allergic reaction. As far as a comparison, it was so easy to take as apposed to the ABC drugs. I wish I could’ve continued taking Tecfidera.
Dr. Booster, Am too UCHG 4th March coming for MRI (we need a base line to work from) Blood work chest x-ray have completed all other tests then I'm proceeding to Mavenclad am hopeful going into this with a positive attitude. Here's to a better quality of life. Thank you as always for your vids so educational so informative.
Jane Mayo Rep Ireland 👍💚
Dr. Aaron Boster, the music 🎧😍😎
What oral medicine do u recommend other than mavenclad? Cause u know… something a little less risky? Thx
Great episode! Lots to think about! Off the topic, I have my next round of Ocrevus coming up this month, do I hold off until we see where this Coronavirus is going?
I hope he answers..wonder that too
Do you have a video on Zeposia? Newly diagnosed with early RRMS. Dr suggested to choose one of the infusions or Zeposia and had an opinion on the mechanism matching with my systemic autoimmune problems.
Aaron,what.is your opinion about going from an infusion therapy such as tysabri to induction therapy like Mavenclad? Do you think it would be safe and helpful or no? Just wondering what your opinion on that is? Thankyou sir, you are awesome.
I was put on Mayzent for Active SPMS. I stopped it within a week or two because my BP skyrocketed. I already have hypertension, usually controlled with BP meds. However, there are BP meds I couldn't really take with Mayzent. Well, I'd rather have my BP controlled than be on an MS medication. Now, I'm supposed to start Vumerity soon.......
Why the heck wouldnt you do induction and continuous?
Hey Doc! Congratulations on the MS Clinic! Quick question, maybe others have the same question. I am on Rebif for 5 years now, no active lesions on my latest MRI but clinically I slowly get worse. This year I can finally get on Ocrevus ( it got approved in Romania ). I'm thinnking I should switch from Rebif to Ocrevus. What's your opinion about swiching?
I am sure I have seen this video before 🤔
What is your preferred choice for SPMS?
Thanks!
Thanks but still happy on ocrevus. Any changes to your thoughts on ocrevus?
no changes to my thoughts there!
I have taken shots and pills. I travel months at a time. When I have an exacerbation I don’t have a lot of options for care.
Luckily My MS doesn’t leave a bunch more disability. Now my Neuro has stopped Aubagio. (Hard to get on the road.)
Great video dr. B.
As you know I'm only been diagnosed since April of 2019 , I've had 8 infusions of TYSABRI. do you think I should continue getting infusions or should I go to an oral medication? My neurologist is good but he's not an MS doctor
This doesn’t have anything to do with this video, however I was wondering, is MS something you’re born with?
Hi from Russia, Aaron! Kind of a mistopic, but what do you think about time restricted eating for ms patients?
Do you have a video on Zeposia? I think it has come out more recent than this video but I don't find a video you have on it when I search your channel :) Just want to know your thoughts thanks!
Thanks for the update ! Btw, the title says 2002 update 😅
opps LOL! I've fixed the thumbnail, TY so much!
Not that I wouldn't enjoy being 28 again😁
Great to there is another treatment option for MS patients!
Have lost the color orange in left eye. Now red is starting to wash out. Is this MS related?
Hey doc! I was wondering if you could do a video on the side effects with DMTs, I just started Tecfidera and I want curious about the common side effects and the uncommon, thank you! :)
here you go: th-cam.com/video/T3ENqDN0Q6g/w-d-xo.html
Interesting to hear
Hi dr Boster I'm just restlessly been diagnosed with Ms and wanted to know your thoughts on tecfidera as a first treatment option
Good info TY AAron
Fascinating discussion! Made me much more excited about, and grateful for, my twice yearly Ocravus infusion!! Happy Tu B'Shvat from Jerusalem!! 🌾🍇🌴🌳🌲🥑🍊🍏🍐🍋🍌🥝🍒🍑🍍🌰
TY!
Mavenclad seems to be a game changer for me! I wake up ready for the day! No darn morning after side effects! So far so good! Now if I can get in a routine workout I'd be k8cking M.S. butt!
What are the side effects of MAVENCLAD?
"The most common adverse effects of cladribine were upper respiratory tract infections, headache, and lymphopenia. Serious infections, such as herpes zoster and pyelonephritis, and severe neutropenia have been reported. In the CLARITY trial, neoplasms occurred in 1.4% of patients who received 3.5 mg/kg of cladribine and in 0.9% of those who received 5.25 mg/kg, compared to none of those in the placebo group. Acute cardiac failure occurred in one patient with MS treated with oral cladribine in a clinical trial; cardiac failure has also been reported after IV administration of the drug for indications other than MS. At the oral dosages used in the clinical trial, cladribine did not significantly affect heart rate, cardiac conduction, or repolarization.9 No cases of PML have been reported to date with use of oral cladribine in patients with MS, but PML has occurred with use of the IV formulation in patients with cancer." source: secure.medicalletter.org/TML-article-1577d
I'm a medical student who was diagnosed with MS 5 months ago and started Tecfidera right away. I struggled significantly with this drug for a few reasons. I have frequent digestive issues and intermittent fasting helps a lot but you can't do that on Tecfidera because you have to eat a large meal consisting mainly of fat and protein to avoid nausea, flushing, and itching. This alone caused digestive distress for me. In my late teens and early 20s I had body dysmorphia issues and a very negative relationship with food. I got these things under control 7 years ago and hadn't thought much about it since. Well, Tecfidera made all those issues come flooding back because of the control it had on my diet (I think this is actually something to consider when discussing meds like this with patients). It was also a reminder twice a day of this diagnosis, which was also causing a significant amount of distress. So, in speaking to my neurologist about these issues, we decided to give Mavemclad a try. Being 33, very healthy otherwise, physically strong, and early in my diagnosis, it seemed like a good choice, so we shall see how it goes when all my screenings come back and I can start.
How are you doing now?
Thank you for sharing this info Brother ✌🏻👍🏻👍🏻~John
Since Tecfidera will be available as a generic, does that change your opinion on Vumerity not bringing much to the table? Not sure how neurologist feel about generic DMTs. Thank you!
2 follow up questions:
- I hear some researchers say that they'd like patients on induction therapy to take a maintenance therapy alongside it. What are your thoughts on that? Personally I hope I won't have to bc that's not why I chose induction.
- now that my immune system is down, news about the Corona virus is making me nervous. Are we at greater risk of catching it and experiencing complications from an infection? How can we best protect ourselves?
Thanks for your awesome work 🙏❤️
Marieke Oosterom so with induction are u not protected till year 2 is over .
Marieke Oosterom I also hope ur treatment is going well
I’d like to know too about maintenance therapy along side induction therapy. 👍
@@juliemcneil9197 yes you are protected in year 1 but not fully because the treatment isn't fully completed yet. I like to compare it to antibiotics, you need to finish it all the way through or the virus may not be entirely killed and can strike again. As I understand it, most relabses while on Mavenclad occur in the first year before treatment is completed.
But that's not why some neurologists say patients on induction therapy may benefit from taking maintenance as well, though I don't really understand why they do.
@@juliemcneil9197 thank you very much 🙏 week 6, so far so good
Cape Breton Canada here
I’m looking into going on Mavenclad My gut says hell no as I fell they need to do more research on the long term effects and i/we would be their test study . But my dr said this is my last drug to try so I feel I’m Forced into going on this.
I'm starting this week in Ontario.
@@kkaci5 Karen how are you doing on Mavenclad?
Doctor, how would you feel about using 2 Dmts @ once?
So say I take lemtrada infusion. After 2 years, just to be on the safe side, use a low level drug?
Hey Doc Boss(ter)
I might should just call you Boss from now on.
Do you have a video or link to any comments or thoughts on the potential Harmful Effects or Risks from the S1P modulator type DMTS such as Mayzent?
Given current viral conditions my neurologist & I aren't quite ready to escalate to induction therapy at this time.
Holas Dr. B. Thank you so much for your informative videos. My neurologist likes the fact that I ask questions about my MS treatment, due in part to your vlogs.
I have a question: I am currently on Tecfidera (5 years) and my last MRI in March 2019 showed breakthrough disease (1 new lesion in the brain). My neurologist said he wanted me to get a second opinion regarding changing my DMD.
Fast forward to now: The neurologist he recommended for the second opinion sent me to do an MRI this January and she said they found 2 more active lesions in the brain (yikes!) 😳
She gave me literature on both Mavenclad and Ocrevus (she said she prefers Ocrevus) to read up on.
Question: Even though the 2 DMDs she mentioned are in different forms (a pill as opposed to an infusion), does this mean that my MS has gotten worse (she said I’m still RRMS - I asked) in that these DMDs would be better than any of the others?
I know they are trying to slow down any new progression and/or future breakthrough disease, but both of these new DMDs seem stronger than the Tecfidera.
Hello Dr B from Alberta Canada. Have disease progression and have talked to my neurologist and looking at switching. On the debate whether to do Ocrevus vs mavenclad. I recognize they are two different methods. Can you provide your insights comparing the two?
My neurologist is wanting me to start mavenclad, but I’m in rehab getting some strength back to live independently because I have secondary progressive multiple sclerosis and I have gotten really bad. My kids want me home soon my 16 year old daughter is pissed I’m in here.
Keep Fighting!
Aaron Boster MD
I’m stubborn and I have been thinking of going home this weekend since I don’t get physical therapy on the weekend’s. My kids are crying for me to come home because they’re dad is a narcissist and yelling at them for who knows what he can’t answer me when I have asked we are divorced thankfully but I’m not going to let him treat our kids the way he use to treat me.
I've been on Tecfidera for a while and I'm switching to mayzent, any advice or tips for me on this?
Most of these medicines cost around $90000 per year which is 10 times of my annual income I am happy to go natural and taking ayurvedic medicines.
most patients pay a co pay or less. Assistance programs help many of my patients. worth exploring.
@@AaronBosterMD This type of facility is not available in my country, but thank for your reply.
I have been on Aubagio for 10 months and still have constant GI upset. No new spots at 6 months. Is it worth trying other meds?
It's certainly worth discussing yucky GI side effects your having with your provider!
@@AaronBosterMD QUESTION: is there objective evidence of diet effectiveness on symptoms such as Wahl's or plant based, I currently eat clean(well most of the time).
in your opinion Dr Boster would Mazent be a step down from Ocrevus which has been giving me problems lately? Although it's almost been a year since my last infusion so maybe the B cells are just roaring back :)
my neuro wants me to consider Mazent after he recently switched me to Ocrevus from Tysabri...Iv'e only been on Ocrevus a year.
Went to my doctor appointment yesterday and found out why he wants me to consider switching off of Ocrevus.... my white cell count has consistently dropped while taking O it's now 0.5 after starting at 1.5
I am 50 have had MS for 33 years and have been fairly healthy my whole life started treating the MS in 2002 started high stress job and was then fired by 2007 and on SSI by 2011 but I have been off all treatment for 3 years feeling great but my new doctor wants to get a MRI and put me on new meds I am Catholic and do my best to not use any med that has used any type of aborted fetal tissue is there a place I can go and get info about that please and thank you very much
Hi Doc, what is your take on combining DMTs? Let’s say Ocrevus and Myzent. Thank you.
Do you have any videos on Vumerity? What are your thoughts on this DMT? Thank you
Thanks for the link
Would you use cladribrine for SPMS? Thank you
I would not exclude if from the discussion
Is my 4th year of Mavenclad And now I feel a lot better and saw the things diferent from the first year or remember. Now for me was very good✅😉😍🍀🤗
Whats your opinión for rituxan infusion thank u doctor
Sharing
TY
Aaron Boster MD
Mavenclad one pills after 2 years, ? I apologize for my english🤣🤣🤣🤣
Is no late for my disease, I think, nobody no say nothing, (a doctor)
CET EH