Is Lemtrada the right MS drug for you?

Is Lemtrada the right MS drug for you?

Is Lemtrada right for you? Or more
generally, who is the right patient to take Lemtrada. I’m gonna give you my
opinion on the answer that question in this video, so don’t turn away, cuz that
starts, right now! Howdy! Thanks for learning about MS with me, Aaron Boster. I started this YouTube
channel to help my own MS clinic patients learn between visits, and it’s
my hope that through these videos, I can help you learn too. Today’s video is
focusing on a question I’m commonly asked, “Hey Aaron who’s the right patient to
go on Lemtrada, code name for alemtuzumab, Now as many of you who have
watched this channel know, I’m a big fan of Lemtrada, I think it’s a highly
effective therapy, and I’ll throw some cards up above, that link you to videos
I”ve done on how Lemtrada works, in case you want to check that out.
I’ll also include links down in the description below. Most the time when
people ask me who’s the “right patient” I think they expect an answer of a list
of risk factors that would predispose someone for aggressive disease and those
could be things like: being a male ,being African-American, having spinal cord
disease, having frequent MS attacks, incomplete recovery from attacks, quick
accrual of neurological disability, heavy burden of disease on the brain MRI,
frequent MRI spots, frequent enhancing spots, I could go on. Now, I just listed a
bunch of risk factors that would predispose one giving human to have
increase disability progression, or faster disability, or a worse outcome
compared to someone that didn’t have those risk factors and it stands to
reason that someone with those risk factors might benefit from a highly
aggressive therapy, or from a really efficacious therapy, like Lemtrada,
whereas I don’t agree with that, that’s not how I think we should make the
decision, that’s not how I delineate the person in whom we might consider Lemtrada or not, I think before we consider risk factors we have to take one step
back and ask quite literally a philosophical
question. The philosophical question is, “How do you want to approach this disease?
How do you want to try to beat MS?” And really there’s a branch point. There’s
two options that we have to consider with the current FDA approved therapies
in 2018. The most common way of treating MS is to use an escalation model with
continuous therapies. What I mean by that is all the other therapies that are
FDA-approved except Lemtrada are continuous therapies, you continually
take them on a regular basis, whether that be a pill once a day, or a shot once
a week, or an infusion once a month, or infusion once every six months. The point
is you’re doing something on a continual basis and there’s nothing wrong with
that. In fact that’s the most common way of treating the condition. Now I
mentioned escalation because most commonly people start folks with MS, when they’re using this escalation model, on a medicine that might be mild to
moderately effective, but might have a really nice side effect profile, and if
everything works out, they continue it and if they have worsening disease, they
upgrade. Now I have my own personal opinions about that and again I’ll leave
a link up above and I’ll include a link in the description below about my
opinions on escalation therapy. For this video I want to point out that is the
most common way of treating MS. There’s an alternate option created with
Lemtrada, and that’s an option for immune reconstitution, or rebooting the immune
system, or as I like to say induction therapy, and it’s rather different
philosophically than escalation. With induction therapy you’re hitting the
disease really, really hard upfront. You’re literally ablating the naughty
immune cells and you’re rebooting the immune response and that comes with
upfront risk upfront cost and a lot of monitoring that has to take place in the
short-term, the few years right after the induction, but a large percentage but a
large percentage of patients don’t need re treatment, and in fact looking at the
eight-year long-term follow-up data (CARE MS II) for over 50% of patients went out eight
years and never got retreated about 30% needed a third course and so clearly
this is a discontinuous therapy. So going back to this question of who’s the right
patient for a Lemtrada, I think you can answer it first philosophically. How do
you want to treat the disease? Are you someone who would like to start with a
mild to moderately effective drug in groups of people, but with a great safety
profile? Something that you could take for life if needed, and then see how
things go and if things work out great stay on that therapy, and if they don’t,
then escalate and most patients in my experience are most comfortable doing
that. But there’s another cadre of patients.
These are people that want a chance at improvement, they want a chance at
slowing brain volume loss, they want a chance of no evidence of disease
activity, they want the highest likelihood of trying to achieve that and
they are willing to accept a degree of risk and a degree of complexity upfront
in order to have that opportunity. Now I still think all those risk factors that
I rattled off earlier are valuable. I’m not trying to tell you differently, but I
have found in talking to hundreds upon hundreds of families with MS that people
quickly delineate into one of these two categories. When I described Lemtrada
to patients and families in my clinic room I find that very quickly they
polarize.Now they either say, “No thank you doc! I don’t want to do that!” or they
say, “Tell me more!” And I really think that we have to settle this idea
philosophically of which way we want to treat the disease before we take next
steps. So there you have it a couple of opinions on who’s the right patient for
Lemtrada. My answer it’s a philosophical one. The person that’s
willing to accept upfront degree of risk for the chance at long-term benefit
without re treatment, as compared to someone that might be more concerned
about ongoing long-term safety and is willing to use an escalation model to
try to find that risk balance. There isn’t a right answer. It’s not like one
is good and one is bad. I think that they’re different and I
think it’s awesome that we have options available. Once again, my name is Aaron
Boster and thank you for taking a few moments to learn about MS with me. I
would be very curious about your opinions. What do you think? please leave
your comments and your questions down in the section below, and if you like this video
please feel free to give it a like, and if you’d like to hear more content like
this, please take a moment and subscribe to the channel. Until my next video,
take care.

37 thoughts on “Is Lemtrada the right MS drug for you?”

  1. 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)

  2. 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!!

  3. 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 <3

  4. 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!

  5. 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!!

  6. 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!

  7. 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?

  8. 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.

  9. 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!

  10. 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.

  11. Good morning, Dr B! I'd better not think about it because I am not given this option. Have a nice day 🙂
    All the best from Anna

  12. 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.

  13. Fantastic,informative video.
    I had the option for lemtrada but opted for Tecfidera.
    Thank God for your channel.
    You're helping me greatly.

  14. 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!!

  15. My MS was kept in check for many years via Copaxone and I thought that I was going to maintain exactly where I was. I actually strayed away from my neurologist for several years and unfortunately, I ignored the fact that my legs were becoming weak during physical activity and exacerbated by heat. I finally gave in and scheduled a visit to an MS Neurologist who pretty much turned my world upside down. Through tests to include the gold standard MRI he was able to confirm without a doubt I had significant disease progression. My years relationship with Copaxone came to an end and not that it was a bad drug but it was no longer benefiting me. I was given the choice between Tysabri, Ocrevus and Lemtrada and I originally opted for Tysabri. After having some time to digest all of the options and watching some really good Youtube (shameless plug for this channel) videos I was able to come to the conclusion that I was going opt for Lemtrada instead. I did the first round at the beginning of June which was completely uneventful. I took the following week off as I felt a little fatigued but otherwise in good shape. The only side-effect from my treatment that comes to mind is the complete lack of of anything tasting good. It only lasted about two weeks and when everything tastes like cardboard you're probably going to lose some weight. I went back to work and have been pretty vigilant about any type of opportunistic infection which is a feat in and of itself due to my career field. While I cannot report any improvement to this point I also cannot report any new or worsening disability, relapses or side effects. I can only say that I am not sticking myself with needles every other day and that is a plus. There is a degree of commitment to the post treatment monthly bloodwork. It's pretty easy though as the blood ninjas will show up to wherever you'd like and draw your labs. It's quite amazing how many horror stories you will find about a course of Lemtrada but you just don't find too many that say how unremarkable theirs was. So I'm just here to be that few and far between story that says that my treatment was boring and by far the right decision for me. When it comes to your care you can be in the passenger's seat or you can be in the driver's seat. Sorry about the length of this comment Dr. B and thank you for your wisdom.

  16. 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.

  17. Lena Samantha Graham

    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?

  18. 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

  19. 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

  20. 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!!!

  21. 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 ⚘

  22. 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.

  23. 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.

  24. 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?

  25. 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)?

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