Loved this video, especially as I am on Tysabri. Can you explain the “rebound effect” that occurs, once you stop taking Tysabri? The thought of it scares me.
Basically, Tysabri traps lymphocytes out of the nervous system, but it doesn't destroy them, and they are still potentially autoreactive. If tysabri is stopped, the drug is slowly metabolized by the body (half life around 11 days), and these autoreactive lymphocytes which have accumulated can then enter through the blood-brain-barrier and potentially cause new lesions and clinical exacerbations.
Dr. Brandon Beaber Thank you very much for that explanation. I really appreciate you taking the time to explain and I really appreciate your educational videos!
@@klburke No problem. I am glad you got something out of it. I have a lot of fun making them, and it is quite educational for me to do the research to organize these videos as well. Feel free to suggest a topic that you are interested in, and I may get around to it at some point.
Thanks for sharing! I know a couple of people who have been on Tysabri (and loved it) but had to stop after around 3 year due to the JC virus. As this virus is quite widespread, I understand that a lot of people will inevitably have to change therapy sooner or later. If this is the case why is Tysabri still used so much? Wouldn't be better to just try another drug altogether?
I suppose this is a matter of personal opinion. I definitely have patients who have remained on tysabri for 10+ years while staying JC virus antibody negative. Some people stay on the drug even if they convert to positive if the JC virus antibody index is low. Some people stop the medication for other reasons (desire for pregnancy, allergies, inconvenience of going to the infusion center frequently, bad veins and difficulty getting an IV, failure of the medication, etc). The problem is that there is no high-efficacy disease modifying therapy at this time without significant drawbacks.
Hi Dr Beaber, just now caught this video. I've been on Tysabri for 5 months and it seems like my mobility has gotten worse.This past week has been terrible and it feels like my legs are on fire sometimes. My feet have swollen up pretty bad this week also. I'm more than likely going to make a trip to the er to make sure it's not a relapse. Best wishes to you Dr.
Because it stops relapses...but it does not stop ms...people will continue on to spms and ms progression. High efficacy does not mean it stops ms. see "tysabri brain atrophy ms news today"
Hello Dr Beaber, I was diagnosed with MS about 6 wks ago. I'm due to start Tysabri Infusions in 7 days. I went online to find all the information I could on MS and Tysabri. I'm so glad I found your site. Your videos are very detailed and informative. Exactly what I was looking for. Plus, your pleasant voice makes it easier to digest, all Tysabri's scary side effects. One question I have is, does the medication Tysabri, contain any fetal/human cells? Thank you again for this information.
I had prolonged anaphylaxis over a period of 14 days after my second infusion. I developed bradycardia as well. Any idea what could have caused this? My neuro and cardio doctors are at a loss. I am about to start Rituxan since I seem to have developed random allergies since this.
Have you done a tysabri vs mavenclad video? As someone with MGUS and a sibling with myeloma I’m trying to make an informed decision as I’ve been presented with these 2 options after having been on several DMT’s over last 20 years and am now faced with lesions in my c-spine.
@@DrBrandonBeaber I agree with you. Patients often find themselves (me included) without someone who tells them the most basic information they need to make the right decisions.
@@lidia5072 Obviously, this is a little bit more detailed than what the average person wants to know, but I figured someone searching RUclips for information about Tysabri would probably want as much information as possible.
Thank You Dr Beiber, I just received my 2nd infusion of Tysabri last week. I will say the process at the clinic is easy enough. Is it normal to go through a period of fatigue and bothersome symptoms a week or so after the treatment. This is my 3rd DMT in a little over 2 years, the 1st was copaxone and then Gilenya and now Tysabri. Besides that I use baclofen,gabapentin and the genetic form of ampyr. Is it possible that some of these medications are counteracting each other? Thank You for your videos, much appreciated sir.
Have you ever had a pt with JCV GCN from Tysabri? How common is it? I have non lesional cerebellum atrophy, with progressing cerebellum signs on Tysabri for a year. Neurologist refuses to acknowledge the possibility any advice because I’m scared 😢
hi doctor ... am 29 years old i had tysabri for 10 years now but just last 6 months ago i have positive jcv .. should i continue ? and do you recomend hsct ?
does it still make sense to be on tysabri in 2022 over Ocrevus? how does tysabri compare against Kesimpta also? I know in England Tysabri is offered in an injection subcutaneously…. will this ever come to the states?
Does Tysabri keep all the lymphocytes out of the CNS or just a lower amount? I.e if there are still some lymphocytes in the CSF while on Tysabri is that expected?
Thank you for the video. I would like to ask generally, why none of standard MS drugs expect Mavenclad is based on patient´s body weight, so 120kg person receives the same amount of drug as 60 kg?
This is a complicated issue, but the short answer is that a lot of multiple sclerosis drugs have a "wide therapeutic index" meaning that the efficacy of the drug and risk of side effects is not dependent on a specific concentration of the drug in the bloodstream. In other words, although a 60kg person is going to have a lower blood volume and hence higher drug concentration, for most MS drugs, this will not significantly affect the efficacy or risk of the medication, so it is just easier to have a single dose.
I can't give you direct medical advice here, but this is something I would consider. Due to expansion in the diagnostic criteria of MS, CIS is actually now uncommon (assuming that a spinal tap is performed). It would depend on the the situation basically.
My 20 year old niece has just been diagnosed a week before Christmas 2020 with MS. She lost sight in one eye and then two weeks later lost the use of her legs. 2 relapses. Her Neurologist wants to start her on this drug every month but we are terrified of PML. Do you have any advice? We are so lost and desperate. Thanks in advance.
@L M Thank you for your reply. It means a lot. My niece is having her 5th infusion next week and she hasn't had a single relapse! She's doing brilliant! We are very proud of her. Tysabri is free to us here in the UK through our taxes we pay for the National Health Service which gives free healthcare to all UK residents. Good luck to you. I hope things continue to go well for you x
I was diagnosed this June and will be starting my first Tysabri treatment today. I haven't lost eyesight (knock on wood), but I did lose a lot of control of my right leg. I went to the ER and that's when I found out. They gave me some kind of steroid treatment which over the course of 2 days pretty much completely fixed my leg. After that I started getting some numbness around the inner thigh region. The neurologist told me that if I do nothing at all then symptoms will become worse and potentially permanent. I really don't like the idea of being on any medication honestly... so to have go on something like this really scares me. I wish the best for you niece.
@@mr.pocket575 Oh I feel for you..I really do. Those initial weeks, months..you feel like you've been hit with a sledgehammer. You will get through this though. My niece has been having the Tysabri every month and she is WONDERFUL. She just had two MRI scans and she has no new lesions, hasn't had any attacks whatsoever since being on the Tysabri infusion. It's a wonder drug. Don't be scared (easy for me to say..I know) go with the Tysabri and you'll feel stronger as the time goes on. Positive thoughts and hugs from me to you x
@@mr.pocket575 hi! I was diagnosed in January 2022 I am currently on DMT (dimethyl fumarate) but my neurologist recommended Tysabril recently and I am doing some reading and the benefits early on seem to be promising. But I do have concerns for PLM but so far I am negative and with the constant blood work I am feeling a bit more safe knowing my status. My only physical symptoms so far is little numbness that come and goes, fatigue and some light cognitive issues with memory (ADD) so I’m hoping this treatment works for me 🤞🏻 good luck with finding a treatment that suits you 🙂
Hi, thankyou for this video I wanted to ask if this medication is safe to take whilst breastfeeding I am due to give birth anytime now and my neurologist said it was safe but I am still worried it may be toxic.
Another great video! Thank you!
Loved this video, especially as I am on Tysabri. Can you explain the “rebound effect” that occurs, once you stop taking Tysabri? The thought of it scares me.
Basically, Tysabri traps lymphocytes out of the nervous system, but it doesn't destroy them, and they are still potentially autoreactive. If tysabri is stopped, the drug is slowly metabolized by the body (half life around 11 days), and these autoreactive lymphocytes which have accumulated can then enter through the blood-brain-barrier and potentially cause new lesions and clinical exacerbations.
Dr. Brandon Beaber Thank you very much for that explanation. I really appreciate you taking the time to explain and I really appreciate your educational videos!
@@klburke No problem. I am glad you got something out of it. I have a lot of fun making them, and it is quite educational for me to do the research to organize these videos as well. Feel free to suggest a topic that you are interested in, and I may get around to it at some point.
Thanks for sharing! I know a couple of people who have been on Tysabri (and loved it) but had to stop after around 3 year due to the JC virus. As this virus is quite widespread, I understand that a lot of people will inevitably have to change therapy sooner or later. If this is the case why is Tysabri still used so much? Wouldn't be better to just try another drug altogether?
I suppose this is a matter of personal opinion. I definitely have patients who have remained on tysabri for 10+ years while staying JC virus antibody negative. Some people stay on the drug even if they convert to positive if the JC virus antibody index is low. Some people stop the medication for other reasons (desire for pregnancy, allergies, inconvenience of going to the infusion center frequently, bad veins and difficulty getting an IV, failure of the medication, etc). The problem is that there is no high-efficacy disease modifying therapy at this time without significant drawbacks.
@@DrBrandonBeaber Thank you, I didn't know anyone who stayed that long on Tysabri.
Hi Dr Beaber, just now caught this video. I've been on Tysabri for 5 months and it seems like my mobility has gotten worse.This past week has been terrible and it feels like my legs are on fire sometimes. My feet have swollen up pretty bad this week also. I'm more than likely going to make a trip to the er to make sure it's not a relapse. Best wishes to you Dr.
After this review why isn't it discontinued?
Because it stops relapses...but it does not stop ms...people will continue on to spms and ms progression.
High efficacy does not mean it stops ms.
see "tysabri brain atrophy ms news today"
Hello Dr Beaber, I was diagnosed with MS about 6 wks ago. I'm due to start Tysabri Infusions in 7 days. I went online to find all the information I could on MS and Tysabri. I'm so glad I found your site. Your videos are very detailed and informative. Exactly what I was looking for. Plus, your pleasant voice makes it easier to digest, all Tysabri's scary side effects.
One question I have is, does the medication Tysabri, contain any fetal/human cells? Thank you again for this information.
I had prolonged anaphylaxis over a period of 14 days after my second infusion. I developed bradycardia as well. Any idea what could have caused this? My neuro and cardio doctors are at a loss. I am about to start Rituxan since I seem to have developed random allergies since this.
Why not genetically modify myelin so that it's invulnerable to T cells and B cells?
Thanks Doc, very enlightening.
:)
Have you done a tysabri vs mavenclad video? As someone with MGUS and a sibling with myeloma I’m trying to make an informed decision as I’ve been presented with these 2 options after having been on several DMT’s over last 20 years and am now faced with lesions in my c-spine.
Not specifically a comparison video, but I have a video on mavenclad: ruclips.net/video/omb32XFK4bQ/видео.html
Wow, that's a lot of information! Thanks a lot!
Thanks. I figured that more information is better than less information. Hopefully, it is all digestible.
@@DrBrandonBeaber I agree with you. Patients often find themselves (me included) without someone who tells them the most basic information they need to make the right decisions.
@@lidia5072 Obviously, this is a little bit more detailed than what the average person wants to know, but I figured someone searching RUclips for information about Tysabri would probably want as much information as possible.
Thank You Dr Beiber, I just received my 2nd infusion of Tysabri last week. I will say the process at the clinic is easy enough. Is it normal to go through a period of fatigue and bothersome symptoms a week or so after the treatment. This is my 3rd DMT in a little over 2 years, the 1st was copaxone and then Gilenya and now Tysabri. Besides that I use baclofen,gabapentin and the genetic form of ampyr. Is it possible that some of these medications are counteracting each other? Thank You for your videos, much appreciated sir.
Have you ever had a pt with JCV GCN from Tysabri? How common is it? I have non lesional cerebellum atrophy, with progressing cerebellum signs on Tysabri for a year. Neurologist refuses to acknowledge the possibility any advice because I’m scared 😢
hi doctor ... am 29 years old i had tysabri for 10 years now but just last 6 months ago i have positive jcv .. should i continue ? and do you recomend hsct ?
My neurologist is suggesting tysabri even though I do test positive for the jv virus . Super confused
does it still make sense to be on tysabri in 2022 over Ocrevus? how does tysabri compare against Kesimpta also? I know in England Tysabri is offered in an injection subcutaneously…. will this ever come to the states?
There is no head to head study comparing tysabri and kesimpta to my knowledge. I am not sure if subcutaneous tysabri will come to the US.
Does Tysabri keep all the lymphocytes out of the CNS or just a lower amount? I.e if there are still some lymphocytes in the CSF while on Tysabri is that expected?
Have you ever had a patient with the cerebellar neurodegeneration from Tysabri?
I am not aware specific data on the percentage of lymphocytes excluded. I don't see anything on the product label to answer this question.
Thank you for the video. I would like to ask generally, why none of standard MS drugs expect Mavenclad is based on patient´s body weight, so 120kg person receives the same amount of drug as 60 kg?
This is a complicated issue, but the short answer is that a lot of multiple sclerosis drugs have a "wide therapeutic index" meaning that the efficacy of the drug and risk of side effects is not dependent on a specific concentration of the drug in the bloodstream. In other words, although a 60kg person is going to have a lower blood volume and hence higher drug concentration, for most MS drugs, this will not significantly affect the efficacy or risk of the medication, so it is just easier to have a single dose.
@@DrBrandonBeaber Thank you for the explanation.
Would you recommend Tysabri for CIS if JCV negative?
I can't give you direct medical advice here, but this is something I would consider. Due to expansion in the diagnostic criteria of MS, CIS is actually now uncommon (assuming that a spinal tap is performed). It would depend on the the situation basically.
@@DrBrandonBeaber thank you very much
My 20 year old niece has just been diagnosed a week before Christmas 2020 with MS. She lost sight in one eye and then two weeks later lost the use of her legs. 2 relapses. Her Neurologist wants to start her on this drug every month but we are terrified of PML. Do you have any advice? We are so lost and desperate. Thanks in advance.
@L M Thank you for your reply. It means a lot. My niece is having her 5th infusion next week and she hasn't had a single relapse! She's doing brilliant! We are very proud of her. Tysabri is free to us here in the UK through our taxes we pay for the National Health Service which gives free healthcare to all UK residents. Good luck to you. I hope things continue to go well for you x
I was diagnosed this June and will be starting my first Tysabri treatment today. I haven't lost eyesight (knock on wood), but I did lose a lot of control of my right leg. I went to the ER and that's when I found out. They gave me some kind of steroid treatment which over the course of 2 days pretty much completely fixed my leg. After that I started getting some numbness around the inner thigh region.
The neurologist told me that if I do nothing at all then symptoms will become worse and potentially permanent. I really don't like the idea of being on any medication honestly... so to have go on something like this really scares me. I wish the best for you niece.
@@mr.pocket575 Oh I feel for you..I really do. Those initial weeks, months..you feel like you've been hit with a sledgehammer. You will get through this though. My niece has been having the Tysabri every month and she is WONDERFUL. She just had two MRI scans and she has no new lesions, hasn't had any attacks whatsoever since being on the Tysabri infusion. It's a wonder drug. Don't be scared (easy for me to say..I know) go with the Tysabri and you'll feel stronger as the time goes on. Positive thoughts and hugs from me to you x
@@mr.pocket575 hi! I was diagnosed in January 2022 I am currently on DMT (dimethyl fumarate) but my neurologist recommended Tysabril recently and I am doing some reading and the benefits early on seem to be promising. But I do have concerns for PLM but so far I am negative and with the constant blood work I am feeling a bit more safe knowing my status. My only physical symptoms so far is little numbness that come and goes, fatigue and some light cognitive issues with memory (ADD) so I’m hoping this treatment works for me 🤞🏻 good luck with finding a treatment that suits you 🙂
@2Bcreative4Lifemake sure you sign up for the biogen co pay assistance. It’s been great for me. They cover what my insurance doesn’t pay.
Hi, thankyou for this video I wanted to ask if this medication is safe to take whilst breastfeeding I am due to give birth anytime now and my neurologist said it was safe but I am still worried it may be toxic.
Sorry. I can't give you medical advice here. This is a controversial topic.