Is Lemtrada the right MS drug for you?
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- čas přidán 12. 11. 2018
- In this video, I’ll answer the question “who is the right patient for Lemtrada.” My answer might surprise you! If you’re impacted by MS and considering this therapy, this video is for you!
Please share you experiences, opinions, questions and your comments below!
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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: 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!
You know where I stand Dr Boster. Another great video ty as always. I'm all in best decision I've made for MS. 🙏🏼💪🏼
Amen Matt! #WeHaveMS
@@AaronBosterMD Ty again for all you do.
#WeHaveMS
I did my last round of lemtrada a few months ago. Going through it was tough, but it was worth it. I am one of the lucky ones to experience serious disability improvement. I was using a walker or cane for more then 4 years. I was 19 when I stopped walking by myself and it never went away. I had very very heavy MRI activity and disability for my age, I had my MS specialists scratching their heads if it was even MS at first.
Now I am walking without ANY aids, I actually have the privilege of having an "invisible disability" for the first time since my diagnosis. I still need my wheelchair for distance but I am building strength still! who knows where I could be next year.
Last MRI I was told some of my lesions are shrinking!!!!! I don't believe in miracles, but I do believe in the amazing doctors and solid science behind my recovery
#MSWarrior! That's awesome Becca!
I'm so happy for you!! Thanks for your testimonial from Brazil! 😘
I had alemtuzumab / Lemtrada before it was licensed back 11 years ago. Best decision I made, I weighed up the side effects and risks of the trial and treatment but decided it was the right thing for me. I've been relapse free for 11 years 🙏
Dr. Bostor and Lemtrada saved my life. Not enough words to explain my gratitude. Thank You
Joe, You're an #MSWarrior man!
I am so lucky. I was diagnosed this year and the doctors gave straight away only two options: ocrevus or lemtrada. I chose lemtrada and did already my first round, no side effects so far, only a light skin reaction during the days in the hospital. Feeling great and happy about this choice of treatment.
#MSWarrior
Thank you Doc!!
Really appreciate all the insight and information you provide to the MS folks trying to do the best for themselves!! Gotta say, I look at you as an advocate for us....THANK YOU!!
YW Chris! That means a whole lot to me. #WeHaveMS
Great explanation. I've learned so much about my MS from watching your videos. Keep up the good work
TY Still Vertical! If you have a chance to help, let others know about the channel. I'm hopeful to reach as many folks impacted by MS as possible via CZcams. #WeHaveMS
Fantastic,informative video.
I had the option for lemtrada but opted for Tecfidera.
Thank God for your channel.
You're helping me greatly.
TY Boddy! I'm hopeful to reach as many folks impacted by MS as possible via CZcams and appreciate your support! #WeHaveMS
I’ll be starting Lemtrada in the next 2 weeks. Thanks for your informative videos.
YW Paige! Contrats on your decision! #WeHaveMS
Hey Dr B love your videos.
I’m 12 months post round 2 of lemtrada. And as much as it was a scary thought being such an aggressive treatment it has worked wonders for me. And on a recent mri there is no signs of any significant changes. In my eyes no news is good news.
Again thanks for the great videos 👍 (ps I’m actually enrolled now in a worldwide 10 year follow up study)
That's really fantastic Craig! TY for sharing your experience! Congratulations as well! #MSWarrior
I took the plunge, completely aware of the fact that there is a lot at stake. I will not deny all the fears that came and still come to my mind, but for now I'm taking one day at a time...and hoping for the best.
I do believe that this treatment requires close and caring follow up, though. But hey, no pain, no gain!
#MSWarrior!! AWESOME!
Lemtrada ❤️ I am from Houston
But still see your videos I love your talks
right on! #WeHaveMS
Wow, thank you for this video. It is very timely. My friend just finished her first round of Lemtrada last Friday. We were both wondering why neither of us were offered this right out of the gate, post dx. We are both patients of the escalation model, which seems to also be closely tied to what insurance will cover, as much as the patient's philosophy. Insurance wants you to fail on two other DMT's, before covering Lemtrada. I am on my 3rd DMT because of new active lesions on every MRI, and I was only diagnosed two years ago! This seems like an option I would have liked to have been given. Sigh. Next neurologist appointment is on Dec 13. I'm going to suggest Lemtrada. Thanks again for another informative video and your time.
YW Karen and TY for watching and supporting the channel via your comments. #WeHaveMS!
Thank you for your channel very informative I live
in England and have had MS for 22 years my neurologist put me
on betaferon 10 years ago but am may be going onto a more aggressive
treatment so all your information is very helpful
thank you
YW Paul! TY for watching and TY for sharing here! #WeHaveMS
It was a hard choice to make.. Thanks to my Dr and MS nurse I got approved . Next week will be my MRI. I am over 1 yr post Round 2. My last MRI was pretty good. Hoping my relapse this year wont show anything new. Still waiting for my labs to show certain tests out of the RED zone. Best choice , so happy I was considered. Thanks for sharing your opinion on .. What is so hard for us MS'ers to decide.. Which DMT fits... With so many choices were getting closer!!! #CureMS
Right on MS Memes and more! #WeHaveMS
I chose Lemtrada as my first DMT. I wanted both NEDA and no daily drugs, and Lemtrada offered me the best chance of getting both long-term. I am naturally a risk taker, so the decision was easy! Round 1 has been a breeze - bring on round 2!!
#MSWarrior
I like your philosophy and wish that I had originally had a provider who was open to aggressive treatment. When I was diagnosed in 2015 I was only given an option of choosing an interferon and discouraged from even considering the newer therapies that were unproven. I ended up going out of country for HSCT in 2017 with EDS 6.0. It turned out to be life changing/saving for me and I’m hoping to get back to work and a somewhat normal life in the next year. I’m glad I did it, but would have given Lemtrada a try if it were available (I asked, but my case wasn’t considered aggressive enough to warrant it even though my disability was progressing). Crazy I was actually hoping a lesion might pop up on my brainstem so it could be considered.
#MSWarrior! TY for sharing Jessica!
Hey Dr Boster, thanks for the videos, they are the best online. I have a question or maybe a suggestion for another video. It would be nice a comparison between Lemtrada and HSCT (ablative and non) as they are both induction therapies with the aim to reboot the immune system.
Great topic! I have a friend who is an MS doc in Norway currently doing a clinical trial on exactly this topic!!!
Hi Dr. Boster I think I may want to change to Lemtrada. I have been on Ocrevus for 3.5 years. I had been on Tysabri until I got the JC virus. Tysabri worked great for me. My muscle spasms were to to none but on Ocrevus they are awful and I am so ready to feel better. I have had MS fir 23 years. I became almost feeling like Quadraplegc from taking the first drug Avonex when I was diagnosed at 24 in 1997. I went into my bedridden quadriplegic state in 1999 when I was 26 for 6 months. I have been a wheelchair user ever since. I did go on Novantrone in 2004 but by 2006 had to go of it and find a Cardiologist. I was then in a remission but still unable to walk although I did start walking in 2009 but something strange happened after walking all summer to Christmas. I started walking backwards and falling. This is a long story that I can tell you later. In 2011 I lost my remssion and Cannot fnd a decent med for me to stay on. Oh and my heart is ok now. I am just stuck in bed unable to sit too long or my legs and feet star hurting. Taking 2 days of PT a week but that is all I can handle. I want my doctor to help me but my Neuro and his Nurse Practitioner say that Lematra is not FDA approved. I need help
0:11 BAM! You got me GOOD this time! ;)
HA! grinz
Im not yet diagnossed, I have a telehealth consult with you on Tuesday. If I do have MS Im all for kicking its ass. I have a life goal to be a foster parent when my daughter goes to college (5 years)
Thanks for your video. I'm finding it so hard to decide between Lemtrada and Ocrevus. The main thing about Lemtrada that puts me off is the blood tests every 4 weeks - they have to be done at the hospital where Lemtrada will be given, which isn't near to home. I had plans to leave the country for a while (or at the very least be able to be free from hospitals & MS for more than a month at a time) and I wouldn't be able to do that for 5 years, whereas I would with Ocrevus. But I prefer the idea of an induction to an escalation therapy.
I had my first relapse when I was 15, second when I was 17, and then the disease was dormant until this year, when I was nearly 27. Then I had another relapse 7 months later. With symptoms in between the two. I've never tried a disease modifying therapy.
1st: You are choosing between 2 of the 3 most effective disease modifying therapies that currently exist. You're unlikely to make a wrong decision as to your 1st DMT.
2nd: there are 2 different philosophical approaches to treating MS. Lemtrada = discontinuous therapy, induction; meaning upfront risk for long term possible gain; Ocrevus= chronic suppressive therapy. Much less up front risk and requires non stop therapy for ever.
This is another great video Dr Boster. I will be diagnosed 2 years on November 30. Last year I had what I was told was a mild relapse as in, sensory issues in my right thigh, like someone using a blow torch on the inside. Some 16 months on, that same issue has returned, but today while getting my Tysabri infusion, it was explained that because this is an old episode, there is little can be done and it wouldn't be considered a relapse. That said, there is greater weakness in my right leg as well. I will be 2 years on Tysabri next February and my JCV is 1.1. Perhaps I am over worrying!!
Not sure Darragh, but I hope this might help explain a bit more: czcams.com/video/Foj9eMU9OSw/video.html
@@AaronBosterMD Thank you so much for this. My local doctor had considered a Pseudo relapse however this flare up has lasted 7 days thus far and there is new numbness in my thigh. I am waiting for the neurologist to consider what to do. Thank you again.
#WeHaveMS
Best drug avalible in my opinion. I never took any escalating drugs for many years but after 16 decided to go ahead with Lemtrada this year. With the expectation of living 50 more years or more I didn't see and ongoing immunosuppressant as a viable option.
Hi Dr. Boster
I lost the link to your video where you asked a question, I'm sorry. What was your question? Your videos are very helpful for me to think about my life. Thank you!!! escalation therapy is something for me to think about. I'm on Ocrevus. I'll have to talk to my parents about this. I'm curious about the escalation therapy option.
Thank you!!!
Ocervus is a great DMT and I hope it keeps your disease at bay! No need to change if you're doing well on your current DMT.
Dr. B!! What a timely video for me! My neurologist asked me to consider Lemtrada, I was diagnosed 14years ago and I’ve been on just about all the “recurring” therapies. I’m currently on Ocrevus and since I started 1.5 years ago my MS seems to be having it’s way with me and I’m irritated! So if Lemtrada can choke out my MS completely or even to a whisper I’ll take it!! My question is what are the up front risk and cost you mentioned? And does it matter how long you’ve had MS and the severity of your disability in order for Lemtrada to reboot the immune system as described in this video? What are the chances of regaining lost function?
Please check out my video's on the improvement project: czcams.com/video/_tWRMuPjaz0/video.html
here's the Summer 2018 Improvement project update: czcams.com/video/S0hYQJoxvLY/video.html
I have to talk to my Dr. about this drug. Never heard of this
I have several Lemtrada related vids in the description in case you'd like to learn more about it!
I wish Lemtrada was around when I was diagnosed in 2004. I've followed the "escalation path" by starting with Copaxone, then Tysabri, and now Ocrevus for a few years. The problem is - disability keeps marching on and is slowly getting worse despite these DMTs. I think my next escalation step might be Lemtrada.
I'm right there with you. Avonex, copaxone, gilenya, ocrevus....and disability keeps marching on. Insurance is refusing first full dose of ocrevus in a hospital, and doctor says I'm too high risk. (Mast cell activation disorder) lemtrada came up today.
@@GenghisBird are you diagnosed via having high tryptase levels or diagnosed based on symptoms alone?
Howdy, Doc! Breakthrough disease and new & worsening lesions on MRI 6 mos. post R2 of Lemtrada. Now 13 mos. post R2, my disability has worsened and currently- still ‘severely immunosuppressed.’ Due to recent reports, this drug is no longer being given by neuro. Would a 3rd round be possible while immunosuppressed? Or, would Ocrevus be a better option (JCV is almost 4)?
Has anyone’s insurance denied Lemtrada treatment for their first MS treatment? If denied, is there a letter somewhere that we could get to help get the insurance to change their mind?
Hello, I am curious to understand why my neurologist never spoke to me about Lemtrada. I will go straight asking to her, also because now I am out from drugs from seven months (last was ocrevus) and I don’t understand why. Thanks for your attention.
Hi Dr. Boster, do you have a video explaining why ms symptoms get so much worse during the flu? I've noticed that any type of infection, including a paper cut that gets infected, will make ms symptoms worse. I'm just trying to understand why and what exactly is going on in the body during these times. Thank you!
This is called a pseudo exacerbation. I discuss it a bit in my video on relapses: czcams.com/video/Foj9eMU9OSw/video.html
And what if lemtrada doesn't work on you??.. it's been 1 year after the 1rst lemtrada dose, but my condition keeps getting worse... I'm really disappointed
How difficult is it for Neurologists to obtain insurance approval for Lemtrada? Can a patient use Lemtrada as a first/second line therapy? How sticky are insurance companies in the US about using Lemtrada as a third line treatment. Does a patient have to fail on two DMTs first? Any comments would be great!
In USA the label "recommended" only using lemtrada after 2 other DMTs have failed. Insurance companies often translate this literally that you CAN'T have it until 2 drugs have failed 1st. This is a major issue b/c the earlier we use lemtrada the better it works...
Can you do a video on ldn?
I'll add this to my list, TY Kristy!
I use Tysabri, wich is working fine, but i also have the choice to either use lemtrada or stemcell theraphy , what would you recommend? I wonder og you have any data om the long term sideeffects in those therapies? Is it true that one common sideeffect in stemcell theraphy is blather cancer?
I strongly caution when considering a stem cell transplant and would NEVER have this done for MS outside of a clinical trial.
Hi Dr. Boster, is the any cases of PML in patients who take Lemtrada?
None to date except those who transitioned from Tysabri onto Lemtrada and in hindsight they had PML while on tysabri.
Dear Doctor, do you still feel the same way (about Lemtrada) as you did four years ago?
Has the situation (or the risks involved in using more aggressive treatments) changed
since then? What would you now recommend to a newly diagnosed patient, and why?
Thank you for your time.
I have a video addressing this that is set to come out in a few short weeks!
@@AaronBosterMD Thanks, doc. I look forward to seeing it.
@@AaronBosterMDoh did it come out? It’s 2023 THANKS! AnnMarie In Santa Barbara California.
@@dennisrohatyn7782me too!!!
Do you recommend round 3 of Lemtrada if there is brain lesions or switching treatment?
not enough info to be able to comment Cathy! Great to discuss with your provider for sure.
What do you like your patients Lymphocytes to be at for round 2? I was supposed to have round 2 this week but I needed to cancel due to illness...I noticed that my lymphocytes have dropped from 0.9 (they were there for 3 months) and now they are 0.6.
Definitely something to review with your MS provider. The counts are NOT REQUIRED to return within a normal range to re-dose, this drug doesn't work that way.
what about a drug that i can be pregnant and it is safe for the baby
please consider a video on that for yung mums ,
thanks alot ⚘
Howdy Mneera. How about this: czcams.com/video/m9HXFLu2a1M/video.html
@@AaronBosterMD uh you are the best
Hope that was helpful!
What about LDN ?
What are your thoughts on LDN Habiba?
Do you treat out of State Patients
Yes ham shank, we do indeed. Here's a link to our center's website: www.ohiohealth.com/services/neuroscience/our-programs/multiple-sclerosis/