I had my last Lemtrada infusion in Feb 2017. Since that time, I have had no new lesions or relapses. I was lucky not to have experienced any side effects during, or post treatment. I feel that Lemtrada saved my life. I work full-time in a very busy environment and have just completed my Masters. I am more busy now then before my diagnosis. Lemtrada worked for me and I am very grateful to my neuro for recommending it. Also, before Lemtrada, I had three spinal lesions and now I have one scanty lesion, amazing!
I should add that I went on Lemtrada after failing Fingolimod within 3 months. During that time, I developed two new enhancing lesions on my brain. Lemtrada was viewed by my neuro as the best option, as I was also JC positive.
Glad to hear you’re doing well! Have you noticed any progression at all since lemtrada from a physical stand point regardless of the lack of relapses and lesions?
I was 35 I think lol. It’s been so long ago 🙏 I’m 😮Yes I’d have had MS since 16, but my best MS friend, who was about the same age as me, but had MS only a coupl of years and doesn’t watch RUclips, 😆, but Jamie Gadd did Lemtrada a year after me so I was able to, with Dr Aaron Boster ♥️, 😁 🙏, coach her Through her first Also, really rough year one, and she is also in remission. I hate to be opinionated BUT, I can’t help iT, especially when it comes to DMTs…..So I think 🧐 you guys can wait til you’ve had MS to 19 years, giving you to much time for your MS to show its really ugly face, Progress substantially, Which as far as I have ever heard, it almost always does, or you can wait just til you have had MS for 2 or 3 years, and never have to find out the truth of the what disease progression is. I had a very progressive disease course but when I saw her MRI and compared to mine, I knew then that if Lemtrada was available( and there was this much proof that the side effects were completely overrated) I wouldn’t have lost 15 years or more of living “normal.” Let’s go Boster and Jamie. I think you may know our friend 😛
Hi, Dr. Boster - 5 years ago my wife was diagnosed with highly active RRMS. She had had 6-month relapse cluster before diagnosis and had terrible motor fatigue. She recovered only very slowly but then plateaued. We watched your videos before making a decision on treatment. My wife was offered ocrevus and lemtrada, but went for lemtrada because we wanted to have a baby sometime in the future. Round 1 in 2018, round 2 in 2019. No lesion, no relapse since September '18. She recovered fully (well, if she walks for 2 hours, she needs to rest 15 min - which is fine). She had Graves' disease which was super easy to manage and simply went away on its own after a year. She seems to be among the lucky lemtrada patients who had CDI :) And we just had our baby girl :) Many, many, many thanks for putting such useful information out there in such simple language. It helped us make a decision that changed our life for the better. Three hugs - mine, my wife's, and our baby's - from Lisbon, Portugal.
I had my last Lemtrada infusion in Dec of 2020 and all yearly MRIs have shown no new activity since! The other day, I realized that I could feel a foot massage and that hasn't happened in 15 years.😊
I was a Dentist in the Air Force when I was diagnosed with MS in Jan 2019. My entire right arm/hand was numb and spastic and I was unable to safely work. I chose Lemtrada as my first DMT and began treatment April 2019. After a few months, most of my symptoms subsided and I could work again. Thanks Dr. Boster! Your videos steered me towards Lemtrada.
My last Lemtrada treatment was in 2017. I have had no new lesions or progression of disease. Lemtrada has been a godsend. In fact my doctor has seen some significant improvement.
I can confirm 100% that lemtrada is very effective. I am 5yrs disease free. I did however have to have my thyroid removed as a side effect. It was inflamed from 20g to 200g. A significant side effect, & a complicated surgery. But I'm still standing. :-)
Dr. Boster, I am so glad I came across your RUclips channel! I am 68 years old and this year I will have had MS for 20 years. I am African American and I have been on Lemtrada since 2019. The way you explained Lemtrada is not how I have ever heard it explained. Thank you for being so concise open and honest. I am doing great I take Gaberpinent twice a day and that is it. thank you Lemtrada it was the best choice for me. Discontinuous is my new word.
I had 3 Rounds of Lemtrada, the 1st set was a Phase 3 Clinical Trial at UBC in Vancouver, Canada. Despite getting thyroid issues (Graves) as well as platelet challenges and infusion reactions I can honestly say THANK GOD I had it. It brought me atleast 10 years of seriously slowing down my disease progression. I fully agree it’s not for everyone but a miracle for some. It was a miracle for me! I’m now waiting for the next miracle, lol ….
Thanks Doctor Boster! I am one of the people with MS that is more concerned with the potential side effects and hesitant to go on the heavy hitting drugs like Lemtra, but I so appreciate you doing these videos and giving us a deep dive into the different DMTs and how they work. You and your channel are a gift.
I'm the same. I think MS is safer diagnosis than all these potential side effects conditions. And I'm the lucky one who gets all listed & rare side effects for sure!
I start my third round of Lemtrada next week. I had the initial two rounds in 2017 and 2018, and had stable MRIs for six years. Although the disease activity started again, I’m so thankful for the delayed disease progression. I am hopeful for the same success after round 3. I am also thankful for my neurologist, Dr. Paul Ferguson at Marshall Neurology, Dean of Neurology at Marshall University School of Medicine, who has aggressively treated my aggressive MS. I do believe Lemtrada is a revolutionary treatment for MS.
Also, I did have some uncomfortable infusion reactions, and about a year after round 2, had a pretty bad bout with shingles. Other than that, my experience makes it well worth the risk.
The problem is when we, as patients, encounter lemtrada, it is always in the context of the risks and burden of the treatment and rarely the risks and burden of MS. The lesions and inflammation in MS - particularly the lesions - continue to expand and degenerate over time. They don't "stop" and get heal properly, they continue to expand and lead, eventually, to progression and PIRA (all while the patient is told their MS is stable). You did a very good video on risk and risk perception and risk communication which fundamentally changed the way I look at my MS. In the face of smouldering disease which neurologists seemed reluctant or unable to treat, and a progression towards permanent disability, suddenly the downsides of lemtrada didn't seem quite so onerous.
Had good results with Lemtrada. Relapsed in 2020 4 years after first infusion during Covid and took a course of ocrevus and relapsed again in December last year. My original doctor has stopped practicing medicine and my new doctor keeps steering me away from Lemtrada to other continuous treatments. They state it’s better to be proactive but in my case I disagreed. I was okay with being reactive and when my general symptoms I managed got out of range I would contact my original doctor and it would be addressed. Now it’s a fight to even get Lemtrada back on the table and I’m stuck with another round of ocrevus. I miss Dr. Standley. Before my first relapse she had asked my how I felt my MS was doing and I said most day I feel normal and don’t even think about it. That’s the difference between Lemtrada and ocrevus.
I did three rounds lemtrada starting in trial 2009, second round 2010 showed two new lesions in 2015 so was eligible for another dose as per trial protocol. Held for another 5 years and in 2020 the plug in the dam burst. Bad relapse neuro put me on Ocrevus. I wanted more lemtrada but he said he felt strongly that the Ocrevus was the way to go now. Said I have to get a few full doses in me for it to have full effect. So far so good three years later
Same. Lemtrada was a great decision for me. Four years, no new lesions and existing ones shrank. Plus disability improvements. I don’t regret it at all, but it is a high risk med for sure.
Wow, I'm mad on your behalf! That's maddening that you can't get Lemtrada, when that is what YOU want! Especially as another round of Lemtrada is what is specified, if you have a relapse after first 2 rounds. I am so sorry you have to put up with this! Take good care my friend.
I am on Lemtrada. Love the fact that I only get treatment once a year if needed for up to five treatments. I was dxed 25 years ago. I was Avonex for my first 12 years. I don’t mind giving myself shots. You do what you have to do. Its just nice not having to worry about giving myself meds.
Great timing!!! I was looking into Lemtrada and I needed as much info on this medication, before wanting to discuss the option with my neurologist. Recently, I was offered Ocrevus, which is very convincing, and also Kesimpa or Tysabry. But I like to the take bull by it’s horns and show it who’s the boss. 😆😆😱 Thank you, Dr Arron. ❤
Excellent videos Dr Aaron. I was diagnosed with Rheumatoid Arthritis a year ago. My Rheumatologist spoke to me on the telephone asking me about how I felt etc. I live in the UK so the health service is strugglig under pressure these days. I told him that I was siffering from tinlgling in hands and feet. That was in March. He contacted my GP who tested me for B12 and folated defieciency. They were fine. They referred me to a Neurologist. He reported "He walked normally but had a slight sway on Romberg’s test. The upper limb reflexes were just present, but the lower limb reflexes were all absent and there was subtle patchy reduced pinprick sensation in the feet up to the mid shin levels. There was no evidence of weakness and dorsal column function was intact. I note that you have kindly sent a battery of blood tests for neuropathy screen but I wonder if I had received them all. His Vitamin B12 and folate levels, basic biochemistry and full blood count were all normal. He told me that his glucose level was normal, but I could not see this. Please would you be kind enough to ensure that he has also had Igs / electrophoresis, ANA, HIV test, and ENA screen (for Sjogren’s), although I presume that these may have already been checked when he had his rheumatology appointment." He also stated " He also has a history of bladder symptoms with urgency and difficulty voiding for which he has been under the care of the urologists." And also, "Over the past few months he has reported dry eyes, but of course he has been on the Amitriptyline. He does not report any systemic or constitutional features." I had a nerve conduction study which came back as normal. He wants to see me gain in 4 months.....in October by now. I guess he doesn't suspect MS as he hasn't sent me for an MRI?
I would think at that point and to just get it over with, maybe you could request an MRI at an imaging center? My daughter was sent for one but with Cigna insurance it was over $600. Without insurance as a cash patient, it was $475. I am curious to know if a person could just schedule an appointment, ensure that a radiologist reviews everything, and then just look at the results online. My daughter's MRI results didn't say MS straight out but it described a demyelinating lesion which was then interpreted by the neuro as MS
I had a optic neuritis at 27 when I was a thriving scientist. They made me wait for another relapse - terrible brain stem that caused the end of my career due to vertigo and balance. Lemtrada offered - I took it. It was tough. But 8 years progression free. Old symptoms yes. But I’m still working and living. I took the risks and I am so glad I did
Diagnosed in 2017 at age 27. 2 rounds of lemtrada completed 2018/2019. No new lesions on MRIs. No symptoms from MS and no side effects experienced from the medication. My neuro has the same philosophy as you and it has been the best decision yet!
I received Lemtrada after relapsing on Tysabri. It was intense for sure but it quieted my aggressive MS and has allowed me the opportunity to regain some quality of life through physical therapy and also gave me some peace of mind with a big move and having to shop around for a good neurologist. For me, the risk was definitely worth the benefit.
What a great explanation of Lemtrada & offering up why we would want to treat our MS swift and severe. With proper care and oversight by our neurologist Lemtrada could be a easy solution to long term quieting of MS. Great video Doc #StrongerTogether #Sharingiscaring
This is the best video about Lemtrada I've seen. I had my first done in 2016, second in 17. I've had one minor blip but i didn't require a 3rd round. I'm still in remission & man am I thankful. During my pregnancy in 2019 i did have issues with my platelets dropping to 104 so I was obviously kept a very close eye on during delivery but all went well & returned to normal by the next day. Lemtrada is hard hitting but absolutely worth it. Here in the UK we have steroids at the same time as the infusion for 3 days on each round, again helpful. Definitely wish this video was around back then because it's so informative & would definitely put a lot of parientw at ease hearing the percentages of how much of a risk something is. Fantastic!
I was diagnosed 25 years ago and have been on a DMT ever since. I did Lemtrada in 2017, 2018 with good results. My functional improvements actually continued for several years after treatment. I’m surprised that more neurologists aren’t recommending it to their patients.
I had lemtrada in 2016 and 17, 3rd in 2020. Now on Orcevius. Im 60 now after 13 yrs od having MS Lemtrada saved my life after a huge relapse. So thankful for it. Rems labs are still good. No problems.
I think one thing your missing is the risk-benefit ratio in regard to upcoming treatments. The possibility for newer medications like Btk Inhibitors or Frexalimab makes this decision in my opinion much harder. The inflammatory part of the disiese is mainly under control by anti cd20 right now and the smouldering part will probably be in near future. I would surely face the risk of Lemtrada if there were no milestones in sight.
I finished my second dose in January and developed chronic ITP in April. I still wouldn't change my decision to have recieved Alemtuzumab because of how many lesions I have and my hope to preserve my mobility for the future. Its been really tough and I'm still at hospital at least once a week until they can stabilise my platelets because I'm always dropping to 1
Thank you for sharing, Dr. Boster. The video was a good refresher course. I had my last dose of Lemtrada in August of 2020. Before I started on the treatment path in 2019, we had a family meeting, and my teenage son put it best by saying, "High risk, high reward. I vote do it." So I did. Lemtrada was my first and only treatment. I'm 3 years out with NEDA.
So great to see your video on Lemtrada, this medication was my life changer and my life saver. Thank you for sharing this Dr Boster and giving people the opportunity to make a decision for themselves based on your detailed information and explanation.
I’m really glad you mentioned aHSCT risk. This is barely mentioned by some neurologists who are extremely pro stem cell and don’t talk about the high risks associated
THANK YOU!!!!! 🔥🔥 For recording this and getting the word out… Lemtrada changed my life. ❤️💕❤️ - Diagnosed in 1993. - Very active RRMS. At various times when needed, I had used a cane, AFO, rollator, and even hand controls on my car. - Failed on 3 MS meds and was heading into PMS. - I was divorced, worked full time (selling MS meds!!! 😉) and had a young child. My mindset was I had to be aggressive in treatment options to stop my MS - Found an MS spec who was using alemtuzumab off label as it wasn’t approved yet. - Received Lemtrada 2010, 2011, 2013, & 2015. - You became my MS doctor and help me live my best life to this day. ❤ THANK YOU Dr B ! 🙏 - I am in REMISSION and on no MEDS since 2015 !!! - I have found Pilates helped me regain balance and function to the point most people can’t tell I have MS !!! - Unbelievable for 30 years of living w/ MS! People with MS, this medication was miraculous for me and my MS. Please find a doctor like Dr Aaron Boster 🔥🔥🔥 who understands the risks and BENEFITS of highly efficacious medications.
Thank you so much. I'm finding it hard going. I can't stop at the moment and it's killing me, still not started treatment yet. My hands are so bad I can barely feel, there's other symptons. Cant wait for a break to recharge. You explain it so well, I feel informed thank you so much❤️
I had to pick between lemtrada and ocrevus and I did originally pick lemtrada but because I had only failed one therapy before(copaxone) my health insurance wouldn't let me take lemtrada. I had to have failed 2 therapies before I could take lemtrada. So I'm on ocrevus and have been for 5 years. Just had an MRI and the mediation is definitely working 💪 💚
Good afternoon, Dr. Boster! I had Lemtrada infusions December of 2017 and 2018 with the OMRF/Center of MS Excellence in OKC, Oklahoma. Was in the REMS program, and was good until 2021 when the MS came back. With Covid pandemic upon us, their infusion center closed. Started Mavenclad in April 2022 and final year in 2023. I was wanting Lemtrada 3rd round since I had do so well without any side effects during those REMS years. Mavenclad has not been so easy, but I have endured. Love your channel, has been so helpful!
I have a LOT of good to say, but also a scary story to share. Hope it helps others. Lemtrada potential complications are serious and it’s definitely not a choice to make lightly. HOWEVER, I saw SIGNIFICANT disability improvements and had no new lesions since the first treatment. Even had several lesions shrink before round two even began. PROS: Before Lemtrada I couldn’t put one foot in front of the other to walk the tightrope in office. Literally couldn’t even get my foot to go there. I was falling regularly. Just standing there and all the sudden would fall backwards. I was struggling with ataxia in the morning. Additionally I had so many miserable symptoms that were taking my ability to enjoy life away. Shortly after starting Lemtrada I was seeing my ability to balance my body. By the end of the year after the first treatment I was able to walk the tightrope without help or fear of falling. The ataxia was gone in the morning. I no longer fall or feel like I am at risk of falling. By the end of the second year I am now able to use ladders to paint our house with my husband. These things are huge. CONS: I did have very serious issues with the first treatment (nearly was rushed to the emergency room because of blood pressure issues). I almost had a stroke during and again the weekend after treatment. This was 100% the infusion center’s fault. They treated me like crap and wouldn’t run an IV with the meds. I couldn’t use my arms by day three because of this. I couldn’t even wipe myself or get up or down from a toilet. It was horrific. This is not the med. This was the center’s treatment of me, complete lack of monitoring, and trying to force me to put meds in my arms without dilution despite it instantly turning my veins and CAPILLARIES pitch black. I was literally screaming in pain. They wouldn’t stop the meds until I was at this state of pain despite my begging them to stop. Then they put the meds back without diluting AGAIN despite my demands. On the last day I got them to dilute the meds with the IV and my blood pressure issues stabilized, but the stress was too much by that point. The next day I was having very serious issues again, including battling hypothermia for well over a week. It took me months to recover from the treatment. Was nearly bed-bound for over a month. Oh and my white blood cells wouldn’t return for literally 1.5 years. My second treatment had to be delayed to nearly two years later because of this. I did also lose skin elasticity within days of the first treatment and my gum health was instantly in the trash. The gums thing has been the absolute worst and it never went away no matter what I do (four years now). EASY IMPROVEMENTS: The second year of treatment I demanded and hawked every single med and made them add IV bags for ALL meds throughout the day. It resolved all issues and I wasn’t even fatigued after treatment. The reason I risked it the second time was because of the life changing improvements and my instincts that it was literally only that bad because of them not diluting the meds. However.. that same facility didn’t make people wear masks and so I got covid from the sick man next to my cubicle at the infusion center. Literally got covid with no white blood cells. It was the worst experience of my life. I have never been so stressed out. I got the immune compromised treatment for covid within 4 hours of the positive testing and there is no doubt it saved my life. Even with that treatment, I couldn’t get better from the virus for the stretch of two months. Thankfully I made it and after this lemtrada treatment my white blood cells returned within 4-6 months rather than 1.5 years. I genuinely believe that raw doggin the meds was the problem.
I am sorry you had such an awful experience but appreciate the details you have shared. I am happy to hear that you have had such great improvements. Even though there were lesions and disability, your amazing recovery demonstrates how much remyelination is happening!
Hello Dr. Boster, we MS international community need your help. Please talk about Marc Abreu a "doctor" who in Florida makes claims that with his thermic treatment he can cure Parkinson, Alzheimer and MS. It's not drama, it's dangerous! The treatment costs a lot of money and is especially promoted to Brasilians! MS community of brasil needs your help Dr Boster! Greets from Paris
Hi! Voy a escribir mi comentario en español para poder expresarme mejor 😅 Yo tuve mi primer ronda de LEMTRADA en enero de 2020 y la segunda en 2021, mi esclerosis múltiple estaba súper descontrolada, tenía recaídas muy seguido y tengo varias secuelas, mi equilibrio era pésimo antes de LEMTRADA y ahora llevo 3 años sin recaídas y siento que puedo dejar de usar el bastón en cualquier momento. Próximamente tendré la MRI de este año para checar cómo está todo pero yo me siento perfecta. Tengo mis laboratorios mensuales y todo está en orden. Vale completamente la pena usar LEMTRADA, los riesgos no son nada a comparación de la calidad de vida que te ofrece. Saludos desde México doctor Boster ❤
Estoy encantado de escuchar acerca de su experiencia positiva con Lemtrada. Descubrí que es una herramienta poderosa para ayudar a muchos de mis pacientes con EM.
@@AaronBosterMD me encantaría que más neurólogos tuvieran tu forma de pensar acerca de usar LEMTRADA en personas recién diagnosticadas, yo pasé por betaseron, aubagio y tysabri antes de que me ofrecieran la opción de lemtrada. Muchas gracias por tus videos, han sido de mucha ayuda para explicar mi condición a familiares y amigos 🙂✨
Gracias por tu comentario. Quisiera preguntar como uno consigue los medicamentos que necesita en Mexico. Hace poco tuvimos una crisis aqui con mi hija (de 21 anos, diagnosticada con EM hace 2 anos) que no pudimos consequir que el seguro aprobara el medicamento que lleva tiempo tomando. Se le acabo y solo despues de hacer demasiadas llamadas (entre ellas, una de 3 horas y 27 minutos!!) fue aprobado pero temo que volvamos a repetirlo todo este mes. Es decir, me gustaria saber como la gente alli consigue sus medicamentos porque no se venden en una farmacia normal y quiero saber si le falta su medicamento, Vumerity, habria posibilidad de ir a Mexico a comprarlo. Aqui sin seguro medico sale a $2400 al mes!!! Y planeando para el futuro, si le toca algo fuerte como Lemtrada y el seguro no lo aprueba, como podria conseguir ese tratamiento? Saludos desde Arizona
I had Lemtrada in 2015-16 and my MS has been stable since then, only slight increases in the neuropathy in my feet and legs. I did get hypothyroidism soon after completing Lemtrada. I also ended up with autoimmune hepatitis after my liver enzymes skyrocketed in August 2019. I am now on azathioprine to help keep my liver happy. Thank you for this very informative video!
Very informative video and thank you. I'm RRMS patient in UK and I'm on Kesimpta. Recent MRI showed stable and nothing to worry about. Please make a video comparing Lemtrada with Kesimpta. I could learn a bit more about diffrences and advantages of both drugs.
Good video. As a lemtrada recipient I knew most of this, but I really appreciate Lemtrada and being on a discontinuous therapy. It’s the first time in 19 years where my calendar doesn’t have some type of infusion scheduled, and that is psychologically refreshing. I know the side effects are potentially serious, but when I learned about Lemtrada I saw that all the side effects were treatable in some way.
I had my first lemtrada procedure in 2017 and the second procedure in 2018. My latest MRI showed some activity, so I may end up doing a third round of lemtrada so I am trying to learn more about the pros and cons of continuing with the third treatment of lemtrada.
I'll take my second Lemtrada course next February 2024. So far I'm very impressed. Only got a little sick definitely rash and feeling ill when I took it because I didn't eat enough aparently. I'm only 31 so that makes it relatively easy. It took me a while to choose it, like 8 years, half the time I've had MS to choose to take it. It's hard to get in the US but if you're poor enough it is essentially free which is a crazy perfect price. My Tcells did come back after like 10 months. I got COVID a few months after Lemtrada it was mild but lasted like 9 days.
Lemtrada is absolutely #2 for me if I need to switch of Tysabri. My only concern is the significant high risk of secondary autoimmune conditions which is quite high 40% or so develop this. How to manage the risk / downplay it if switching?
Hi Dr Boster, thank you for this really informative video. I had my first Lemtrada infusion in 2017 then 2018 and i absolutely loved it! Once my immune system was 'rebooted' I actually forgot I had MS in that I didn’t have to deal with any symptomatic issues- I was living my best life! Now five years on I have no new lesions but some of my symptoms have returned which my MS Team think point to a clinical relapse. I have been offered Lemtrada again and I am delighted! However, I have a question. Since this is the most hard hitting MS treatment and I've had it in the beginning of my MS journey (diagnosed 2015), if I required treatment later on in life what would be my options? Would a continuous treatment be effective after having taken THE most effective treatment for MS: Lemtrada? Thank you so much for all your expert advice and guidance. ❤
I've had MS since 1995 and I'm currently 62 years old. I saw your video regarding those neurologists who won't treat MS patients much over the age of 60, and I have encountered that myself quite recently. After listening to what you have to say about Lemtrada, I was wondering if something else that prevents me from taking most MS drugs is this: My mother had active tuberculosis while she was pregnant with me. In school, in the 1960s, when they lined us all up and gave us a TB test I reacted very badly to it (my entire arm would swell and turn bright red). I am also a Type 1 diabetic (with Lupus/SLE) and steroids cause my blood sugar levels to skyrocket. Are there any DMTs that would be appropriate, or do these comorbidities exclude me from treatment? I'm not asking for diagnosis of anything, simply your thoughts on this. (I would not be a good candidate regardless, due to the high incidence of cancer in my family.)
After 7 other therapies Lemtrada was a no brainer (pun intended). I tolerated the infusions very well and had no side affects until about 5 years post treatment when I came down with shingles (which likely had nothing at that point to do with Lemtrada). I haven’t noticed any improvement in existing conditions, which I was really hoping for, but no new issues or MRI activity since 2016.
My doctor did not tell me about lemtrada. We decided yesterday to use Ocrevus. I’m about to call him up right now and tell him I want to try lemtrada. Thank you for sharing. All DMT have risks so I rather go with the DMT that tapper down with the amount of infusions.
As someone in the UK I feel blessed to have received Alemtuzumab in 2016/17 at the age of 51 and at the point of still being treatment naive (diagnosed age 50) It upsets me greatly that the EMA in 2019 recommended restricting the use , such that the escalation model has been applied: have to fail on a couple of other DMTs before being considered for Alem☹️ Having severe, rapidly evolving RRMS I accrued disability before receiving it (walking is a max of 1.5miles); this however was stopped in its tracks by Alem! Not only am I seeing NEDA, but also no PIRA (unless so subtle, I’m simply not picking up on it) Either way, all neurologists and medical agencies/authorities should recognise that the benefits to high efficacy treatments far outweigh the risks and side effects. Yes, I had a dose of shingles that my GP described as the worst he’d ever seen, but was it worth it - You Bet!! This is another really accessible, easy to follow vid on Alemtuzumab👍 Your last one explaining Alemtuzumab helped family and friends Fi comprehend what was going to happen to my immune system and I’m sure this one will benefit in the same way🙂
I had lemtrada treatment 3 years ago, no new lesions since then....but I developed vitiligo....however, I still believe lemtrada was the best way to go, well it was the only way for me to go since all others therapy failed me
Wish I had started Lemtrada when first DXed. 2016-2019 fair amount of damage. Lemtrada has controlled relapse and damage but did not fix already formed damage.
My question to you Dr. Boster, please, is: Is Mavenclad just a junior version of Lemtrada, with less efficacy and fewer side effects? From the day of my diagnosis, 2.5 years ago, I told my doctor that I wanted the most effective medication available. I don't want the devastation MS can create. I've been prescribed Mavenclad, but told that Lemtrada is 'too risky' and not to be considered. I haven't been pleased by this answer but maybe I'm just not understanding Mavenclad well enough in relation to Lemtrada. Thank you for all your very informative videos.
Mr Fancypants here - it is an immunoreconstitutive therapy ;) Well, that's how I think of it. After finishing round 2 recently I am looking forward to having extinguished the fuse to the best of my ability.
I think the reason people (docs/ patients) might not be keen on Lemtrada because they need to love close to an infusion center where they can get the drugs.
Hey Dr B. Great video - thank you. I had lemtrada as a first line drug in the uk as I snuck in just before the ema review. I’ve had a baby since treatment and managed to get to a point in life where I almost forgot I had ms. But sadly had a double relapse last year so have taken round 3 and am currently neda again🤞🏼 I have had very unstable thyroid disease for 3 years which caused havoc in my pregnancy but I absolutely don’t regret being a Lemmie and it’s great to hear you still think it’s a great drug for us x
I would be in the Lemtrada-camp if I was properly diagnosed with MS. It is good that you expressed in this video how there is two separate group in people straight away. I am very indecisive person, but hearing how I immeaditely jumped into: "Yes, lets give MS a face-slap" gives me confidence to consider this medication very strongly. The science behind it sound very good. The risks are scary, but at the same time...if they can be managed...well, lets try it! 💪
Good morning Dr Aaron, thank you for another awesome Monday morning video sir but one question is would it work on a person who is already in the secondary Progressive stage? Thank you again for all your informative videos. Have a great day sir
Same question for me too! I have wondered whether or not how effective Lemtrada would be in a patient with significant damage to brain and spinal cord? Disappointed that was not addressed. I would definitely sign up if it would be helpful! Thinking it most likely not be helpful but would like to hear what your thoughts are on this. Greatly appreciate this message, as usual. You rock, Dr. B.❤❤❤🔥🔥🔥
Yes. I am one of those people. Saw disability improvements. It has given me much of my life back. I will say, make sure you familiarize yourself with the risks, because they are very serious. Also, if you decide to get it, make them run a liquid IV with every single med they give you. All of them. I don’t care what they say to you, demand it. It will help so much.
Good morning Doc, I was on Lemtrada for MANY years without an adverse reaction & it was decided by others to withdraw it (why I know not & now I'm not on anything & feel it's seen as my problem for which they've no time for & frankly don't care as husband continues to source alternatives for me whilst insisting I continue to exercise daily pretty much)❣️🥴😑
Thank you for this! Am I understanding correctly that you are saying that, despite your fondness for Lemtrada, you also don't prescribe it unless there has been a breakthrough from another medicarion first? I must admit, having watched a good friend struggle woth Hashimotos, the prospect of a 41% of thyroid autoimmine issues is a little concerning to me...
Hi Dr Boster, I like the discussion about Lemtrada. I have a question about other similar treatments like Kesimpta or Ocrevus, are their risk and benefit similar to Lemtrada? Thanks.
I only have one kidney I want to continue to be free of flare ups but I worry because I’m in pain from an injury and take ibuprofen because pain mgmt drs have been horrible and not too helpful since opiates became a pandemic too.
Also here the waiting time is to long. I've had 5 relapses now since October show in the mri scans. So I could be waiting for a bed in hospital for months. I was suggested alternative treatment, I'm still waiting.
So glad I found your channel and have started watching your videos. They are soooo helpful! I am currently on Tysabri, and may be switching to Ocrevus (was also offered kesimpta). After 4 months I don’t think it likes me very much. Hence the potential switch. I share that to say I really appreciate the videos you create and post. Definitely helping me learn more about treatment options.
Hello Aaron boster I have ppms I feel the swimming pool is emptying how can I fill my swimming pool back up. I am not on any medication for my ppms ho would you treat some one with ppms Thanks Chris
@AronBosterMD, which one is better for secondary progressive MS, IVIG or Lemtrada, for a patient for who Betaseron, Mavenclad and Ocreavus didn't help? Once symptoms started they never stopped.
I have taken gilenya because I didn't know how effective lemtrada would be when first came down with aggressive multiple sclerosis in 2018 followed by smouldering multiple myeloma in April 2019.
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I wish Lemtrada was available when I was first diagnosed.
@@mattz5275❤wwww🎉😂ww 18:38 18:43 w ww 18:58 🎉 19:1😊😂ww😂ww2
I had my last Lemtrada infusion in Feb 2017. Since that time, I have had no new lesions or relapses. I was lucky not to have experienced any side effects during, or post treatment. I feel that Lemtrada saved my life. I work full-time in a very busy environment and have just completed my Masters. I am more busy now then before my diagnosis. Lemtrada worked for me and I am very grateful to my neuro for recommending it. Also, before Lemtrada, I had three spinal lesions and now I have one scanty lesion, amazing!
I should add that I went on Lemtrada after failing Fingolimod within 3 months. During that time, I developed two new enhancing lesions on my brain. Lemtrada was viewed by my neuro as the best option, as I was also JC positive.
May I ask how old your were when you started Lemtrada?
@@colekent8413 I was 39
Glad to hear you’re doing well! Have you noticed any progression at all since lemtrada from a physical stand point regardless of the lack of relapses and lesions?
I was 35 I think lol. It’s been so long ago 🙏
I’m 😮Yes I’d have had MS since 16, but my best MS friend, who was about the same age as me, but had MS only a coupl of years and doesn’t watch RUclips, 😆, but Jamie Gadd did Lemtrada a year after me so I was able to, with Dr Aaron Boster ♥️, 😁 🙏, coach her Through her first
Also, really rough year one, and she is also in remission. I hate to be opinionated BUT, I can’t help iT, especially when it comes to DMTs…..So I think 🧐 you guys can wait til you’ve had MS to 19 years, giving you to much time for your MS to show its really ugly face, Progress substantially, Which as far as I have ever heard, it almost always does, or you can wait just til you have had MS for 2 or 3 years, and never have to find out the truth of the what disease progression is. I had a very progressive disease course but when I saw her MRI and compared to mine, I knew then that if Lemtrada was available( and there was this much proof that the side effects were completely overrated) I wouldn’t have lost 15 years or more of living “normal.” Let’s go Boster and Jamie. I think you may know our friend 😛
Hi, Dr. Boster - 5 years ago my wife was diagnosed with highly active RRMS. She had had 6-month relapse cluster before diagnosis and had terrible motor fatigue. She recovered only very slowly but then plateaued.
We watched your videos before making a decision on treatment. My wife was offered ocrevus and lemtrada, but went for lemtrada because we wanted to have a baby sometime in the future. Round 1 in 2018, round 2 in 2019. No lesion, no relapse since September '18. She recovered fully (well, if she walks for 2 hours, she needs to rest 15 min - which is fine). She had Graves' disease which was super easy to manage and simply went away on its own after a year. She seems to be among the lucky lemtrada patients who had CDI :)
And we just had our baby girl :)
Many, many, many thanks for putting such useful information out there in such simple language. It helped us make a decision that changed our life for the better.
Three hugs - mine, my wife's, and our baby's - from Lisbon, Portugal.
I had my last Lemtrada infusion in Dec of 2020 and all yearly MRIs have shown no new activity since! The other day, I realized that I could feel a foot massage and that hasn't happened in 15 years.😊
That is wonderful. So happy for you!
I was a Dentist in the Air Force when I was diagnosed with MS in Jan 2019. My entire right arm/hand was numb and spastic and I was unable to safely work. I chose Lemtrada as my first DMT and began treatment April 2019. After a few months, most of my symptoms subsided and I could work again. Thanks Dr. Boster! Your videos steered me towards Lemtrada.
My last Lemtrada treatment was in 2017. I have had no new lesions or progression of disease. Lemtrada has been a godsend. In fact my doctor has seen some significant improvement.
I can confirm 100% that lemtrada is very effective. I am 5yrs disease free. I did however have to have my thyroid removed as a side effect. It was inflamed from 20g to 200g. A significant side effect, & a complicated surgery. But I'm still standing. :-)
Dr. Boster, I am so glad I came across your RUclips channel! I am 68 years old and this year I will have had MS for 20 years. I am African American and I have been on Lemtrada since 2019. The way you explained Lemtrada is not how I have ever heard it explained. Thank you for being so concise open and honest. I am doing great I take Gaberpinent twice a day and that is it. thank you Lemtrada it was the best choice for me. Discontinuous is my new word.
I had 3 Rounds of Lemtrada, the 1st set was a Phase 3 Clinical Trial at UBC in Vancouver, Canada. Despite getting thyroid issues (Graves) as well as platelet challenges and infusion reactions I can honestly say THANK GOD I had it. It brought me atleast 10 years of seriously slowing down my disease progression. I fully agree it’s not for everyone but a miracle for some. It was a miracle for me! I’m now waiting for the next miracle, lol ….
I've had it for 14 years and I have difficulty walking. I pray this helps me too 🙏🏻💖
Thanks Doctor Boster! I am one of the people with MS that is more concerned with the potential side effects and hesitant to go on the heavy hitting drugs like Lemtra, but I so appreciate you doing these videos and giving us a deep dive into the different DMTs and how they work. You and your channel are a gift.
Isn't he just. Xxx
Thank you for all the information you just gave all of us. It is something to consider.
Is there a risk for PML. I tested positive for the JC Virus?
I'm the same. I think MS is safer diagnosis than all these potential side effects conditions. And I'm the lucky one who gets all listed & rare side effects for sure!
@@freethinkeralwaysI’m the same! Very sensitive to medications and likely to get the worst side effects. Ugh
I start my third round of Lemtrada next week. I had the initial two rounds in 2017 and 2018, and had stable MRIs for six years. Although the disease activity started again, I’m so thankful for the delayed disease progression. I am hopeful for the same success after round 3. I am also thankful for my neurologist, Dr. Paul Ferguson at Marshall Neurology, Dean of Neurology at Marshall University School of Medicine, who has aggressively treated my aggressive MS. I do believe Lemtrada is a revolutionary treatment for MS.
Also, I did have some uncomfortable infusion reactions, and about a year after round 2, had a pretty bad bout with shingles. Other than that, my experience makes it well worth the risk.
The problem is when we, as patients, encounter lemtrada, it is always in the context of the risks and burden of the treatment and rarely the risks and burden of MS. The lesions and inflammation in MS - particularly the lesions - continue to expand and degenerate over time. They don't "stop" and get heal properly, they continue to expand and lead, eventually, to progression and PIRA (all while the patient is told their MS is stable).
You did a very good video on risk and risk perception and risk communication which fundamentally changed the way I look at my MS.
In the face of smouldering disease which neurologists seemed reluctant or unable to treat, and a progression towards permanent disability, suddenly the downsides of lemtrada didn't seem quite so onerous.
Had good results with Lemtrada. Relapsed in 2020 4 years after first infusion during Covid and took a course of ocrevus and relapsed again in December last year. My original doctor has stopped practicing medicine and my new doctor keeps steering me away from Lemtrada to other continuous treatments. They state it’s better to be proactive but in my case I disagreed. I was okay with being reactive and when my general symptoms I managed got out of range I would contact my original doctor and it would be addressed. Now it’s a fight to even get Lemtrada back on the table and I’m stuck with another round of ocrevus. I miss Dr. Standley. Before my first relapse she had asked my how I felt my MS was doing and I said most day I feel normal and don’t even think about it. That’s the difference between Lemtrada and ocrevus.
I did three rounds lemtrada starting in trial 2009, second round 2010 showed two new lesions in 2015 so was eligible for another dose as per trial protocol. Held for another 5 years and in 2020 the plug in the dam burst. Bad relapse neuro put me on Ocrevus. I wanted more lemtrada but he said he felt strongly that the Ocrevus was the way to go now. Said I have to get a few full doses in me for it to have full effect. So far so good three years later
Same. Lemtrada was a great decision for me. Four years, no new lesions and existing ones shrank. Plus disability improvements. I don’t regret it at all, but it is a high risk med for sure.
Wow, I'm mad on your behalf! That's maddening that you can't get Lemtrada, when that is what YOU want! Especially as another round of Lemtrada is what is specified, if you have a relapse after first 2 rounds. I am so sorry you have to put up with this! Take good care my friend.
I am on Lemtrada. Love the fact that I only get treatment once a year if needed for up to five treatments. I was dxed 25 years ago. I was Avonex for my first 12 years. I don’t mind giving myself shots. You do what you have to do. Its just nice not having to worry about giving myself meds.
Lemtrada 🎉has made my life so much better. I would do it again if needed.
It was a rough time.
Great timing!!! I was looking into Lemtrada and I needed as much info on this medication, before wanting to discuss the option with my neurologist. Recently, I was offered Ocrevus, which is very convincing, and also Kesimpa or Tysabry. But I like to the take bull by it’s horns and show it who’s the boss. 😆😆😱 Thank you, Dr Arron. ❤
Did you do it? How’s it going?
Excellent videos Dr Aaron. I was diagnosed with Rheumatoid Arthritis a year ago. My Rheumatologist spoke to me on the telephone asking me about how I felt etc. I live in the UK so the health service is strugglig under pressure these days. I told him that I was siffering from tinlgling in hands and feet. That was in March. He contacted my GP who tested me for B12 and folated defieciency. They were fine. They referred me to a Neurologist. He reported "He walked normally but had a slight sway on Romberg’s test. The upper limb reflexes were just present, but the lower limb reflexes were all absent and there was subtle patchy reduced pinprick sensation in the feet up to the mid shin levels. There was no evidence of weakness and dorsal column function was intact. I note that you have kindly sent a battery of blood tests for neuropathy screen but I wonder if I had received them all. His Vitamin B12 and folate levels, basic biochemistry
and full blood count were all normal. He told me that his glucose level was normal, but I could not see this. Please would you be kind enough to ensure that he has also had Igs / electrophoresis, ANA, HIV test, and ENA screen (for Sjogren’s), although I presume that these may have already been checked when he had his rheumatology appointment." He also stated " He also has a history of bladder symptoms with urgency and difficulty voiding for which he has been under the care of the urologists." And also, "Over the past few months he has reported dry eyes, but of course he has
been on the Amitriptyline. He does not report any systemic or constitutional features." I had a nerve conduction study which came back as normal. He wants to see me gain in 4 months.....in October by now. I guess he doesn't suspect MS as he hasn't sent me for an MRI?
I would think at that point and to just get it over with, maybe you could request an MRI at an imaging center? My daughter was sent for one but with Cigna insurance it was over $600. Without insurance as a cash patient, it was $475. I am curious to know if a person could just schedule an appointment, ensure that a radiologist reviews everything, and then just look at the results online. My daughter's MRI results didn't say MS straight out but it described a demyelinating lesion which was then interpreted by the neuro as MS
I had a optic neuritis at 27 when I was a thriving scientist. They made me wait for another relapse - terrible brain stem that caused the end of my career due to vertigo and balance. Lemtrada offered - I took it. It was tough. But 8 years progression free. Old symptoms yes. But I’m still working and living. I took the risks and I am so glad I did
Hi. How old were you when you received lemtrada?
Diagnosed in 2017 at age 27. 2 rounds of lemtrada completed 2018/2019. No new lesions on MRIs. No symptoms from MS and no side effects experienced from the medication. My neuro has the same philosophy as you and it has been the best decision yet!
hi doc Boster....I had in 2016 and 17....my MS is been stable since then. Thank you to helped me with this med ...
I received Lemtrada after relapsing on Tysabri. It was intense for sure but it quieted my aggressive MS and has allowed me the opportunity to regain some quality of life through physical therapy and also gave me some peace of mind with a big move and having to shop around for a good neurologist. For me, the risk was definitely worth the benefit.
What a great explanation of Lemtrada & offering up why we would want to treat our MS swift and severe.
With proper care and oversight by our neurologist Lemtrada could be a easy solution to long term quieting of MS.
Great video Doc
#StrongerTogether
#Sharingiscaring
This is the best video about Lemtrada I've seen. I had my first done in 2016, second in 17. I've had one minor blip but i didn't require a 3rd round. I'm still in remission & man am I thankful. During my pregnancy in 2019 i did have issues with my platelets dropping to 104 so I was obviously kept a very close eye on during delivery but all went well & returned to normal by the next day. Lemtrada is hard hitting but absolutely worth it. Here in the UK we have steroids at the same time as the infusion for 3 days on each round, again helpful. Definitely wish this video was around back then because it's so informative & would definitely put a lot of parientw at ease hearing the percentages of how much of a risk something is. Fantastic!
Good morning sunshine! Look forward to your Monday morning videos!
Yay! Thank you!
I been following you and I feel that you’ll find the cure of MS
What a truly great teacher. Hello from Cambridge UK 👋🏻
Thank you 🙏
I was diagnosed 25 years ago and have been on a DMT ever since. I did Lemtrada in 2017, 2018 with good results. My functional improvements actually continued for several years after treatment. I’m surprised that more neurologists aren’t recommending it to their patients.
Just had my 5day infusions of lemtrada fingers crossed
I had lemtrada in 2016 and 17, 3rd in 2020. Now on Orcevius. Im 60 now after 13 yrs od having MS
Lemtrada saved my life after a huge relapse. So thankful for it. Rems labs are still good. No problems.
I think one thing your missing is the risk-benefit ratio in regard to upcoming treatments. The possibility for newer medications like Btk Inhibitors or Frexalimab makes this decision in my opinion much harder. The inflammatory part of the disiese is mainly under control by anti cd20 right now and the smouldering part will probably be in near future. I would surely face the risk of Lemtrada if there were no milestones in sight.
I finished my second dose in January and developed chronic ITP in April. I still wouldn't change my decision to have recieved Alemtuzumab because of how many lesions I have and my hope to preserve my mobility for the future. Its been really tough and I'm still at hospital at least once a week until they can stabilise my platelets because I'm always dropping to 1
I had my last lemtrada treatment in 2015 and haven't had any relapse since
Thank you for sharing, Dr. Boster. The video was a good refresher course. I had my last dose of Lemtrada in August of 2020. Before I started on the treatment path in 2019, we had a family meeting, and my teenage son put it best by saying, "High risk, high reward. I vote do it." So I did. Lemtrada was my first and only treatment. I'm 3 years out with NEDA.
I'm going to use lemtrada
Like other commenters, I am so pleased my neurologist eventually allowed me to take Lemtrada. Disease has been pretty quiet since I did in 2018
So great to see your video on Lemtrada, this medication was my life changer and my life saver. Thank you for sharing this Dr Boster and giving people the opportunity to make a decision for themselves based on your detailed information and explanation.
If someone already has Hashimoto's Hypothyroid, does that affect the ability to use Lemtrada?
I’m really glad you mentioned aHSCT risk. This is barely mentioned by some neurologists who are extremely pro stem cell and don’t talk about the high risks associated
So good to have this on a video to rewind for better understanding! Thank You!
You're so welcome!
THANK YOU!!!!! 🔥🔥
For recording this and getting the word out…
Lemtrada changed my life. ❤️💕❤️
- Diagnosed in 1993.
- Very active RRMS. At various times when needed, I had used a cane, AFO, rollator, and even hand controls on my car.
- Failed on 3 MS meds and was heading into PMS.
- I was divorced, worked full time (selling MS meds!!! 😉) and had a young child. My mindset was I had to be aggressive in treatment options to stop my MS
- Found an MS spec who was using alemtuzumab off label as it wasn’t approved yet.
- Received Lemtrada 2010, 2011, 2013, & 2015.
- You became my MS doctor and help me live my best life to this day. ❤
THANK YOU Dr B ! 🙏
- I am in REMISSION and on no MEDS since 2015 !!!
- I have found Pilates helped me regain balance and function to the point most people can’t tell I have MS !!!
- Unbelievable for 30 years of living w/ MS!
People with MS, this medication was miraculous for me and my MS. Please find a doctor like Dr Aaron Boster 🔥🔥🔥 who understands the risks and BENEFITS of highly efficacious medications.
Thank you so much. I'm finding it hard going. I can't stop at the moment and it's killing me, still not started treatment yet. My hands are so bad I can barely feel, there's other symptons. Cant wait for a break to recharge. You explain it so well, I feel informed thank you so much❤️
That sounds rough xxx
@@elliejobonney2926 thanks, we're all facing it. It's getting worse quickly. Good luck to you through the journey
I had to pick between lemtrada and ocrevus and I did originally pick lemtrada but because I had only failed one therapy before(copaxone) my health insurance wouldn't let me take lemtrada. I had to have failed 2 therapies before I could take lemtrada. So I'm on ocrevus and have been for 5 years. Just had an MRI and the mediation is definitely working 💪 💚
I think Ocrevus is similar to Lemtrada, just that the target is CD20 rather than CD52.
Good afternoon, Dr. Boster! I had Lemtrada infusions December of 2017 and 2018 with the OMRF/Center of MS Excellence in OKC, Oklahoma. Was in the REMS program, and was good until 2021 when the MS came back. With Covid pandemic upon us, their infusion center closed. Started Mavenclad in April 2022 and final year in 2023. I was wanting Lemtrada 3rd round since I had do so well without any side effects during those REMS years. Mavenclad has not been so easy, but I have endured. Love your channel, has been so helpful!
I have a LOT of good to say, but also a scary story to share. Hope it helps others.
Lemtrada potential complications are serious and it’s definitely not a choice to make lightly. HOWEVER, I saw SIGNIFICANT disability improvements and had no new lesions since the first treatment. Even had several lesions shrink before round two even began.
PROS: Before Lemtrada I couldn’t put one foot in front of the other to walk the tightrope in office. Literally couldn’t even get my foot to go there. I was falling regularly. Just standing there and all the sudden would fall backwards. I was struggling with ataxia in the morning. Additionally I had so many miserable symptoms that were taking my ability to enjoy life away. Shortly after starting Lemtrada I was seeing my ability to balance my body. By the end of the year after the first treatment I was able to walk the tightrope without help or fear of falling. The ataxia was gone in the morning. I no longer fall or feel like I am at risk of falling. By the end of the second year I am now able to use ladders to paint our house with my husband. These things are huge.
CONS: I did have very serious issues with the first treatment (nearly was rushed to the emergency room because of blood pressure issues). I almost had a stroke during and again the weekend after treatment. This was 100% the infusion center’s fault. They treated me like crap and wouldn’t run an IV with the meds. I couldn’t use my arms by day three because of this. I couldn’t even wipe myself or get up or down from a toilet. It was horrific. This is not the med. This was the center’s treatment of me, complete lack of monitoring, and trying to force me to put meds in my arms without dilution despite it instantly turning my veins and CAPILLARIES pitch black. I was literally screaming in pain. They wouldn’t stop the meds until I was at this state of pain despite my begging them to stop. Then they put the meds back without diluting AGAIN despite my demands. On the last day I got them to dilute the meds with the IV and my blood pressure issues stabilized, but the stress was too much by that point. The next day I was having very serious issues again, including battling hypothermia for well over a week. It took me months to recover from the treatment. Was nearly bed-bound for over a month. Oh and my white blood cells wouldn’t return for literally 1.5 years. My second treatment had to be delayed to nearly two years later because of this.
I did also lose skin elasticity within days of the first treatment and my gum health was instantly in the trash. The gums thing has been the absolute worst and it never went away no matter what I do (four years now).
EASY IMPROVEMENTS: The second year of treatment I demanded and hawked every single med and made them add IV bags for ALL meds throughout the day. It resolved all issues and I wasn’t even fatigued after treatment.
The reason I risked it the second time was because of the life changing improvements and my instincts that it was literally only that bad because of them not diluting the meds. However.. that same facility didn’t make people wear masks and so I got covid from the sick man next to my cubicle at the infusion center. Literally got covid with no white blood cells. It was the worst experience of my life. I have never been so stressed out. I got the immune compromised treatment for covid within 4 hours of the positive testing and there is no doubt it saved my life. Even with that treatment, I couldn’t get better from the virus for the stretch of two months. Thankfully I made it and after this lemtrada treatment my white blood cells returned within 4-6 months rather than 1.5 years. I genuinely believe that raw doggin the meds was the problem.
I am sorry you had such an awful experience but appreciate the details you have shared. I am happy to hear that you have had such great improvements. Even though there were lesions and disability, your amazing recovery demonstrates how much remyelination is happening!
Hi Kelly, is there any way we can connect? I'm kind of in your starting situation right now and would love to chat with you if possible!
Totally same with the gums xx
Hello Dr. Boster, we MS international community need your help. Please talk about Marc Abreu a "doctor" who in Florida makes claims that with his thermic treatment he can cure Parkinson, Alzheimer and MS. It's not drama, it's dangerous! The treatment costs a lot of money and is especially promoted to Brasilians! MS community of brasil needs your help Dr Boster! Greets from Paris
Hi! Voy a escribir mi comentario en español para poder expresarme mejor 😅
Yo tuve mi primer ronda de LEMTRADA en enero de 2020 y la segunda en 2021, mi esclerosis múltiple estaba súper descontrolada, tenía recaídas muy seguido y tengo varias secuelas, mi equilibrio era pésimo antes de LEMTRADA y ahora llevo 3 años sin recaídas y siento que puedo dejar de usar el bastón en cualquier momento. Próximamente tendré la MRI de este año para checar cómo está todo pero yo me siento perfecta. Tengo mis laboratorios mensuales y todo está en orden. Vale completamente la pena usar LEMTRADA, los riesgos no son nada a comparación de la calidad de vida que te ofrece. Saludos desde México doctor Boster ❤
Estoy encantado de escuchar acerca de su experiencia positiva con Lemtrada. Descubrí que es una herramienta poderosa para ayudar a muchos de mis pacientes con EM.
@@AaronBosterMD me encantaría que más neurólogos tuvieran tu forma de pensar acerca de usar LEMTRADA en personas recién diagnosticadas, yo pasé por betaseron, aubagio y tysabri antes de que me ofrecieran la opción de lemtrada. Muchas gracias por tus videos, han sido de mucha ayuda para explicar mi condición a familiares y amigos 🙂✨
@@florecitadelmal
¡de nada!
@@AaronBosterMD 🧡
Gracias por tu comentario. Quisiera preguntar como uno consigue los medicamentos que necesita en Mexico. Hace poco tuvimos una crisis aqui con mi hija (de 21 anos, diagnosticada con EM hace 2 anos) que no pudimos consequir que el seguro aprobara el medicamento que lleva tiempo tomando. Se le acabo y solo despues de hacer demasiadas llamadas (entre ellas, una de 3 horas y 27 minutos!!) fue aprobado pero temo que volvamos a repetirlo todo este mes. Es decir, me gustaria saber como la gente alli consigue sus medicamentos porque no se venden en una farmacia normal y quiero saber si le falta su medicamento, Vumerity, habria posibilidad de ir a Mexico a comprarlo. Aqui sin seguro medico sale a $2400 al mes!!! Y planeando para el futuro, si le toca algo fuerte como Lemtrada y el seguro no lo aprueba, como podria conseguir ese tratamiento? Saludos desde Arizona
I had Lemtrada in 2018 and I'm doing fine: no attacks en no new lesions 😃
I had Lemtrada in 2015-16 and my MS has been stable since then, only slight increases in the neuropathy in my feet and legs. I did get hypothyroidism soon after completing Lemtrada. I also ended up with autoimmune hepatitis after my liver enzymes skyrocketed in August 2019. I am now on azathioprine to help keep my liver happy. Thank you for this very informative video!
I'd love 2 hear more information about Lemtrada in a future video.... ❤️❤️
Sir can u tell about hsct
Very informative video and thank you.
I'm RRMS patient in UK and I'm on Kesimpta.
Recent MRI showed stable and nothing to worry about.
Please make a video comparing Lemtrada with Kesimpta.
I could learn a bit more about diffrences and advantages of both drugs.
How about age? Is there an age of a patient that would not be safe? Or do you personally look at the health and lifestyle of the individual?
Good video. As a lemtrada recipient I knew most of this, but I really appreciate Lemtrada and being on a discontinuous therapy. It’s the first time in 19 years where my calendar doesn’t have some type of infusion scheduled, and that is psychologically refreshing. I know the side effects are potentially serious, but when I learned about Lemtrada I saw that all the side effects were treatable in some way.
I had my first lemtrada procedure in 2017 and the second procedure in 2018. My
latest MRI showed some activity, so I may end up doing a third round of lemtrada so I am trying to learn more about the pros and cons of continuing with the third treatment of lemtrada.
I'll take my second Lemtrada course next February 2024. So far I'm very impressed. Only got a little sick definitely rash and feeling ill when I took it because I didn't eat enough aparently. I'm only 31 so that makes it relatively easy. It took me a while to choose it, like 8 years, half the time I've had MS to choose to take it. It's hard to get in the US but if you're poor enough it is essentially free which is a crazy perfect price. My Tcells did come back after like 10 months. I got COVID a few months after Lemtrada it was mild but lasted like 9 days.
Lemtrada is absolutely #2 for me if I need to switch of Tysabri. My only concern is the significant high risk of secondary autoimmune conditions which is quite high 40% or so develop this. How to manage the risk / downplay it if switching?
Thanks for another great video. Your channel is great
Thank you Dr Boster, excellent empowering, educational video as always 🔥🔥🔥🔥🔥
Excellent. Thank you
I would be interested in trying Lemtrada. I appreciate your videos.
I already have SPMS & have had MS for 41 years. I'm on Ocrevus w/no new lesions. Doesn't sound like Lemtrada is for people like me. Am I wrong?
Hi Dr Boster, thank you for this really informative video. I had my first Lemtrada infusion in 2017 then 2018 and i absolutely loved it! Once my immune system was 'rebooted' I actually forgot I had MS in that I didn’t have to deal with any symptomatic issues- I was living my best life! Now five years on I have no new lesions but some of my symptoms have returned which my MS Team think point to a clinical relapse. I have been offered Lemtrada again and I am delighted! However, I have a question. Since this is the most hard hitting MS treatment and I've had it in the beginning of my MS journey (diagnosed 2015), if I required treatment later on in life what would be my options? Would a continuous treatment be effective after having taken THE most effective treatment for MS: Lemtrada? Thank you so much for all your expert advice and guidance. ❤
Great explanation. Just finished round 2 and I've been one year without flares ❤❤
I've had MS since 1995 and I'm currently 62 years old. I saw your video regarding those neurologists who won't treat MS patients much over the age of 60, and I have encountered that myself quite recently. After listening to what you have to say about Lemtrada, I was wondering if something else that prevents me from taking most MS drugs is this: My mother had active tuberculosis while she was pregnant with me. In school, in the 1960s, when they lined us all up and gave us a TB test I reacted very badly to it (my entire arm would swell and turn bright red). I am also a Type 1 diabetic (with Lupus/SLE) and steroids cause my blood sugar levels to skyrocket. Are there any DMTs that would be appropriate, or do these comorbidities exclude me from treatment? I'm not asking for diagnosis of anything, simply your thoughts on this. (I would not be a good candidate regardless, due to the high incidence of cancer in my family.)
After 7 other therapies Lemtrada was a no brainer (pun intended). I tolerated the infusions very well and had no side affects until about 5 years post treatment when I came down with shingles (which likely had nothing at that point to do with Lemtrada).
I haven’t noticed any improvement in existing conditions, which I was really hoping for, but no new issues or MRI activity since 2016.
That's awesome! So happy for you.
My doctor did not tell me about lemtrada. We decided yesterday to use Ocrevus. I’m about to call him up right now and tell him I want to try lemtrada. Thank you for sharing. All DMT have risks so I rather go with the DMT that tapper down with the amount of infusions.
What is your opinion on mavenclad
I had never heard about Lemtrada that way…what’s your thought for someone who is long time ms patient…would this be a course you would consider.
I only got 1 1/2 years with lemtrada before more lesions were found.
Thanks for the explanation of Lemtrada. I'm PPMS on Ocrevus so not applicable to me but now I know... Thanks again Dr Boster
You should! It has been the BEST for me.
As someone in the UK I feel blessed to have received Alemtuzumab in 2016/17 at the age of 51 and at the point of still being treatment naive (diagnosed age 50) It upsets me greatly that the EMA in 2019 recommended restricting the use , such that the escalation model has been applied: have to fail on a couple of other DMTs before being considered for Alem☹️ Having severe, rapidly evolving RRMS I accrued disability before receiving it (walking is a max of 1.5miles); this however was stopped in its tracks by Alem! Not only am I seeing NEDA, but also no PIRA (unless so subtle, I’m simply not picking up on it) Either way, all neurologists and medical agencies/authorities should recognise that the benefits to high efficacy treatments far outweigh the risks and side effects. Yes, I had a dose of shingles that my GP described as the worst he’d ever seen, but was it worth it - You Bet!!
This is another really accessible, easy to follow vid on Alemtuzumab👍 Your last one explaining Alemtuzumab helped family and friends Fi comprehend what was going to happen to my immune system and I’m sure this one will benefit in the same way🙂
thank you
Lemtrada used and I now have new lesions after 5 years. Should and is it beneficial to retreat with lemtrada for a third dose ?
I had lemtrada treatment 3 years ago, no new lesions since then....but I developed vitiligo....however, I still believe lemtrada was the best way to go, well it was the only way for me to go since all others therapy failed me
Okay... but is bruimvi okay? Im at the neurologist now. Going to ask about lemtrada.
Wish I had started Lemtrada when first DXed. 2016-2019 fair amount of damage. Lemtrada has controlled relapse and damage but did not fix already formed damage.
My question to you Dr. Boster, please, is: Is Mavenclad just a junior version of Lemtrada, with less efficacy and fewer side effects? From the day of my diagnosis, 2.5 years ago, I told my doctor that I wanted the most effective medication available. I don't want the devastation MS can create. I've been prescribed Mavenclad, but told that Lemtrada is 'too risky' and not to be considered. I haven't been pleased by this answer but maybe I'm just not understanding Mavenclad well enough in relation to Lemtrada. Thank you for all your very informative videos.
I've had ms going on from 1988-now.aven. not a good speller mablvrlenclad 22:51
Mr Fancypants here - it is an immunoreconstitutive therapy ;) Well, that's how I think of it. After finishing round 2 recently I am looking forward to having extinguished the fuse to the best of my ability.
I think the reason people (docs/ patients) might not be keen on Lemtrada because they need to love close to an infusion center where they can get the drugs.
I did Lemtrada and I have thyroid issues must have gotten it from the Lemtrada treatment never had it before
Hey Dr B. Great video - thank you. I had lemtrada as a first line drug in the uk as I snuck in just before the ema review. I’ve had a baby since treatment and managed to get to a point in life where I almost forgot I had ms. But sadly had a double relapse last year so have taken round 3 and am currently neda again🤞🏼
I have had very unstable thyroid disease for 3 years which caused havoc in my pregnancy but I absolutely don’t regret being a Lemmie and it’s great to hear you still think it’s a great drug for us x
I would be in the Lemtrada-camp if I was properly diagnosed with MS. It is good that you expressed in this video how there is two separate group in people straight away. I am very indecisive person, but hearing how I immeaditely jumped into: "Yes, lets give MS a face-slap" gives me confidence to consider this medication very strongly. The science behind it sound very good. The risks are scary, but at the same time...if they can be managed...well, lets try it! 💪
Did you try it?
Good morning Dr Aaron, thank you for another awesome Monday morning video sir but one question is would it work on a person who is already in the secondary Progressive stage? Thank you again for all your informative videos. Have a great day sir
Same question for me too! I have wondered whether or not how effective Lemtrada would be in a patient with significant damage to brain and spinal cord? Disappointed that was not addressed. I would definitely sign up if it would be helpful! Thinking it most likely not be helpful but would like to hear what your thoughts are on this. Greatly appreciate this message, as usual. You rock, Dr. B.❤❤❤🔥🔥🔥
Yes. I am one of those people. Saw disability improvements. It has given me much of my life back. I will say, make sure you familiarize yourself with the risks, because they are very serious. Also, if you decide to get it, make them run a liquid IV with every single med they give you. All of them. I don’t care what they say to you, demand it. It will help so much.
But it is not “approved” for SPMS.
I was at least 7 years into SPMS and it’s more than worked for me
What is an appropriate patient for lemtrada
Is Mavenclad a similar treatment/outcome?
very interesting, thank you for explaining so clearly. Something to think about.
Anyone have any knowledge or experience with Fenebrutinib? My doctor was talking to me about participating in a clinical trial for it.
Good morning Doc, I was on Lemtrada for MANY years without an adverse reaction & it was decided by others to withdraw it (why I know not & now I'm not on anything & feel it's seen as my problem for which they've no time for & frankly don't care as husband continues to source alternatives for me whilst insisting I continue to exercise daily pretty much)❣️🥴😑
Thank you for this!
Am I understanding correctly that you are saying that, despite your fondness for Lemtrada, you also don't prescribe it unless there has been a breakthrough from another medicarion first?
I must admit, having watched a good friend struggle woth Hashimotos, the prospect of a 41% of thyroid autoimmine issues is a little concerning to me...
I was lucky enough to finish my second round in 2018!
Hi Dr Boster, I like the discussion about Lemtrada. I have a question about other similar treatments like Kesimpta or Ocrevus, are their risk and benefit similar to Lemtrada? Thanks.
Way less I think. Not so complexe but they are also very affective. Ocrevus ARR is 0.1
I’m going to bring it up with my neuro
I only have one kidney I want to continue to be free of flare ups but I worry because I’m in pain from an injury and take ibuprofen because pain mgmt drs have been horrible and not too helpful since opiates became a pandemic too.
You sound like an amazing dr, im glad I found you
Also here the waiting time is to long. I've had 5 relapses now since October show in the mri scans. So I could be waiting for a bed in hospital for months. I was suggested alternative treatment, I'm still waiting.
So glad I found your channel and have started watching your videos. They are soooo helpful! I am currently on Tysabri, and may be switching to Ocrevus (was also offered kesimpta). After 4 months I don’t think it likes me very much. Hence the potential switch. I share that to say I really appreciate the videos you create and post. Definitely helping me learn more about treatment options.
Hello Aaron boster
I have ppms I feel the swimming pool is emptying how can I fill my swimming pool back up. I am not on any medication for my ppms ho would you treat some one with ppms
Thanks Chris
Love to meet you one day Aaron ❤
My husband and I drove 18 hours round trip and it was worth it to meet Dr. Boster. He is as caring in person as he is on RUclips 😊
@AronBosterMD, which one is better for secondary progressive MS, IVIG or Lemtrada, for a patient for who Betaseron, Mavenclad and Ocreavus didn't help? Once symptoms started they never stopped.
I have taken gilenya because I didn't know how effective lemtrada would be when first came down with aggressive multiple sclerosis in 2018 followed by smouldering multiple myeloma in April 2019.